Tuesday, August 6, 2013

Tuesday, May 28, 2013

Whoa!!

     Okay, so I may have totally forgotten that I even have a blog for the last little bit - oops!! I am working on getting myself back into a routine with everything - obviously don't have that one figured out yet! :)
     We had a great Memorial Day weekend! We were able to go to a local dog show, hot air balloon launch and fireworks display - our Memorial Day tradition. Peanut loves ALL the dogs and seems to make it her goal to pet every dog there. So, she'll run from one dog to the next without even letting the owner finish their sentence! That was pretty much the way things went until she found it... the one dog she had asked and asked me if we would see. I insisted that there was no such thing as a pink dog. But, wouldn't you know it, she proved me wrong once again! She found a black poodle who had half her fur dyed bright pink! She spent at least 20 minutes petting that dog and letting me know that it was "the softest dog ever! If the owner would have allowed it, I'm sure she would have brought the dog home! Pumpkin, on the other hand was mostly interested in wrestling with his cousins! He still enjoyed himself - it was just a different type of enjoyment. I'm sure his favorite part was the stop at the toy store. At this particular toy store, they have all sorts of toys out for the kids to play with so he always loves a visit there! The hot air balloons were a treat as always. We got to see 2 launches and their balloon glow that night. It truly is a great family tradition that we all enjoy!
     On Monday, when we were thoroughly exhausted from all our fun the day before, we decided we needed to get our garden put in. We got a late start but worked steadily all day. We expanded our garden this year - we have our "small" garden - 10 feet by 23 feet - and we expanded our "big" garden to 30 feet by 30 feet. My husband would tease me everytime I said, I don't know if we are going to have room for this! We managed to get everything planted except the potatoes which hopefully will be planted in the next day or two - or as soon as the rain slows down! My husband and I agree that there are not many things (nothing we can think of right now) that are more beautiful than freshly turned soil with a beautiful green plant in it. Of course, a lot of our garden just looks like freshly turned soil since we planted seeds but still the starter plants we bought are absolutely beautiful! My husband's dream is to retire and become a farmer. Of course, with our 1/2 acre that would involve moving so it's a dream that is a little ways off in the future. For now, we make the most of the land we have and enjoy trying new varieties and new plants every year. This year we planted 10 tomato plants - 7 different varieties including orange, yellow, stripey and even, purple! We also planted squash, pumpkin (which are so much fun to grow!), watermelon, canteloupe (our first year to grow melon!), corn, radishes, eggplant (yum!), lettuce, snap peas, cucumber, peppers, broccoli, cauliflower, celery and beans. It's going to be a beautiful harvest! And I'm sure we will have PLENTY to share! I must say, this has become one of my favorite things to do and watching the garden grow has become a beautiful part of my summer! :) Oh - and just a side note, it only took us about 9 hours to get the garden beds ready and planted! LONG day but it will certainly be worth it in the fall!

Monday, May 13, 2013

This messy life...

     I an convinced that life is supposed to be messy. I have lived a large part of my life in a protected comfort-zone of solitude or living in community with a very few close family members/friends. I haven't been overly involved in anyone's life. When Peanut got sick, I pulled even further into my solitude comfort zone. Life was too hard so I withdrew into myself which has always been my easiest coping method. I have accepted that this is not how God designed us to live. However, finding the correct way to change that is a whole different story. I want to be involved but it's not as easy as just having the desire. I really struggle to be there for others when it's an inconvenience for me or makes me uncomfortable. So, I am working at prying myself out of my comfort zone. I am seeking ways to be more involved in my friend's lives. I am hoping to find a way to live outside myself. I know this is something that needs to change and I believe that decades down the road I will be thrilled I made the effort to change this part of me. It's time to roll up my sleeves and see how many different ways I can serve those around me.
     When I think about how we are meant to live, I immediately reflect on the life of Jesus. There were times when he withdrew to be alone and pray. I understand that part of him - that need in me is usually in hyper-drive! However, most of the time Jesus extended himself beyond what was comfortable, usual or what He desired. Although I cannot quote book chapter and verse, I recall stories when Jesus was ready to begin something different or move on to another town but he stopped because his heart was moved by the people he was surrounded by. His heart broke for those around him. His life had to be the messiest life I've ever heard of. He surrounded himself with outcasts and consistently ministered to those considered to be undeserving, immoral, or just plain unacceptable. He loved all men and served everyone with love and grace. It is His life I must strive to follow. It is His example that will prompt me to become a true Christ follower. He is the one that will shape me into the woman he wants me to be - a woman I can love.

Monday, May 6, 2013

ups and downs of T1

     Well, we are continuing to work toward the right medication dose for Peanut's diabetes. Lately, I feel like it's been all over the place. She will go from low 100s before breakfast to over 300 at morning snack time then back down to low 100s by lunch, 300s again at mid-day snack and tonight - a shocking 41 at dinner time. I can't figure out what is going on with this girl! She is just all over the place with her BG readings! It's a bit frustrating to not be able to point your finger at the culprit and then adjust it so that her readings can be in a healthier range. On top of that it just exhausts her. She becomes moody and weepy. Poor girl! It certainly is a juggling act to try to control her diabetes. I'm sure other parents of T1 kids feel the same way. It's frustrating and never ending. I am still working on learning to live with this and accept everything it means for our life. It truly can be a life-consuming illness. For now, we will keep working towards a healthier Peanut and trust that someday there will be a better way to manage her diabetes.

Tuesday, April 23, 2013

Rough day

     Ok, I'm aware that I go through emotions quicker than I do underwear but.... today was a rough day. Because I didn't have to work right away, I was able to volunteer in Peanut's classroom for a little bit this morning. It all started when Peanut was walking with her class to gym class. A couple of the boys in front of her were goofing off in the hallway. One boy jerked back from the other and smacked Peanut in the face with the back of his head. She was instantly screaming. I took her to the gym then ran to the office for some ice. She seemed to recover from that pretty quickly. I spent the rest of her gym class visiting with her teacher. Around the end of her gym class, I was headed down the hall to clock in for my shift at the daycare. I heard someone crying and then realized it was Peanut. I turned around to go back to the gym and see what was wrong with her. It was then I heard staff yelling my name. When I was fully turned around, I saw the gym teacher rushing toward me with a screaming Peanut in his arms. I didn't have time to think. I scooped her into my arms and took her to the office which was just a few feet away. I set her down on a chair and ran to get some towels to clean her hands as there was a little blood on them. When I started cleaning her up, I saw that she had a bloody nose and mouth. She had cut her lip open and the bridge of her nose was already starting to bruise. She was complaining of a headache but in the same place as always - across her forehead. The principal was at my side helping to clean her up and check her to make sure she was ok. He asked her to check her bottom teeth to see if they would wiggle. She checked her top teeth. He told her no - check the teeth on the bottom. She again checked the ones on top. They repeated this another 4 or 5 times. She just didn't seem to be able to distinguish between the words top and bottom even as I continued to remind her that she needed to check her bottom teeth. Finally, I just reached my finger into her mouth and checked myself. They were fine. Peanut had calmed down quite a bit by this point. She decided she wanted to go wash her hands as there was some dried blood on them. I told her that was fine, set her ice pack down and she stood up to walk to the bathroom. Then she said she was tired. I, at this point, was totally freaked out but managed to hide it. I asked her if she thought her blood sugar was low. She said yes. So, I scooped her up, grabbed the cup of ice the principal had got for her and took her to the bathroom to wash her hands. Then, I carried her to her classroom to check her blood sugar. Her BG was 362. I spoke with her teacher briefly about what all had happened. I told her that Peanut felt tired. She replied, "She looks so pale!" I looked over at my baby girl and sure enough, she looked pale - really pale. Not knowing what else to do at that point, I left Peanut in the capable hands of her teacher and told her to send Peanut down to my room if she seemed tired or if anything else happened. I spent the afternoon feeling stressed and worried. Peanut, however, seemed to recover just fine.
     This evening, we got a letter in the mail about Peanut's A1C (an indication of how well controlled her diabetes is.) Her levels were the highest they've ever been. I knew we had to do better. Unfortunately, we have been following all of the doctor's orders and doing everything we should and her numbers were still all over the map. At bedtime I tucked Peanut into bed. I read her a flashlight story. (thanks Aunt S. for starting that tradition - she loves it!) At the end of the story, Peanut told me her arm felt heavy and she thought she was low. I had her say her prayers real quick and went to get the glucometer. Sure enough, her BG was low - 54! That was 2 nights in a row that her sugar crashed at bedtime. There just doesn't seem to be any rhyme or reason to her BG. I feel like we adjust one way and then her BG switches to the opposite. We had been getting really high readings at night and now she's crashing. It's just so frustrating! I wish we could find the way to control this. I just don't know how to handle this. I feel like we have no control and when her BG isn't controlled there is so much at risk for her. I am ready to be done with diabetes. I really hate this.

Monday, April 22, 2013

I sure do love the sunshine!

     I cannot believe what a huge difference a sunny day makes for me! I have just loved the beautiful weather we have been having lately. The last 2 days I was able to spend quite a bit of time outside working on the yard and flower beds. Afterward, I felt so energetic and happy! I'm not sure how long I will be up tonight - my energy just isn't lagging! This is what makes me want to move somewhere sunnier. Somewhere warmer. However, that doesn't seem to be part of God's plan for us right now so I will just take advantage of any sunny days we get!
     Today was a really good day for that and other reasons. Today was the first day this school year that I was able to spend the entire school day away from the school building! I spent the morning visiting with my parents and then spent a quiet, peaceful, heavenly afternoon home alone, eating my lunch in peace, while it was hot, without any interruptions! I couldn't believe how much I enjoyed my time! It was wonderful to be relaxed enough to really enjoy my time even though I was 20 minutes away from Peanut. I'm hoping that this will bring lots of good things next year! I didn't even do anything all that wonderful. I watched some of my favorite TV shows while I did some long overdue work on my computer. Nothing really thrilling but I had forgotten what it was like to be home during the day. And I don't know if I've ever spent that much time without my kids with me! I feel rejuvenated - I'm thinking this needs to become a weekly thing. It's amazing how much of a difference this has made! I definitely will be starting this! As it happens, I have one day each week that I don't work at all - what a wonderful day that is going to be for me! I can scrapbook, be lazy, get some housework done, and, overall, feel like a normal person! :)

Saturday, April 20, 2013

unwanted changs

Boy, I feel like a broken record but.... over the past year or so there have been a lot of changes I have gone through. I feel like my whole personality has changed. A lot of these changes I don't like and I am beginning to process how I can create new changes that I do like. I have become so selfish. Granted, this is something I have struggled with my whole life but it has certainly gotten worse lately. I have become so absorbed by all the things going on in my own life that I feel like I'm in a bubble and I can't begin to understand or take an interest in what is going on outside that bubble. I feel overwhelmed (seems like the theme for me lately) and completely drained. I just don't have the energy to live life. I am in survival mode and I don't like it. I want to enjoy life. I want to make memories with my children. I want to be happy with our life. Yet, I struggle. There is so much that all of Peanut's medical issues have changed for us. I feel like the creative side of me has died and I really miss that part of me. I have no desire to do anything creative anymore. It just feels like so much work. It's so sad to see that part of me gone. I hope that it will return eventually.
    I definitely have to work on the selfish issue. I have to find a way to grow outside of my own home and life. I have to become more involved in others' lives. I just don't know how to find the energy for any of it. My husband and I were talking about Peanut the other day and how we don't know how to correct her behavior. I said that she just seemed exhausted lately and he replied, "Or maybe it's that we are exhausted." While I knew that was true, it hit me like a slap in the face. Maybe the struggles I am having right now are ones I've created myself. I have to start thinking outside myself. I have to create the changes that I need in my life.
     I also have to work on seeing the positive side of things. Lately I have struggled with seeing others succeed. I feel like life itself is a struggle and I am not succeeding - I am just surviving. So, when I see others who appear to be succeeding, I am jealous. I still feel that I can be happy for them but I struggle with questions like "Why can't my life be that good/easy/successful?" I know this is a dangerous road and one I should avoid but it isn't an easy switch to turn off. I want to be a better person. I want to embrace life - no matter what my life looks like. How do I begin that process?

Tuesday, April 9, 2013

Been a while...

     Well, it's been a while and this is why: I have been going through a lot - emotionally, mentally and spiritually. I feel like I've had the wind knocked out of me and that I'm struggling just to get through my days. I've had to work through a lot over the last couple of weeks and I've had to start accepting the reality of not knowing what lays before us as far as Peanut's health is concerned. I have been trying to let go of some of my own desires for my life and to be perfectly honest it has been a very dark time for me. I haven't felt ready to share the depths of my feelings and the darkness that surrounded me and threatened to pull me under. A lot of what I'm working through is hard to explain but I can say this: I feel like I am being attacked on all sides. I feel like I can't catch a break and I feel like I can't get through my days.
     We were able to go away for spring break to my sister's house in North Carolina. I always love visiting with her and I love going to the beach. While on this trip, I decided to try and convince my husband that we should move to NC. That did not go over well. It ended up with a pretty big fight between the 2 of us and made a good chunk of the trip difficult for me, to say the least. The disappointment I felt was more than even I had expected. I think I really just wanted to get away from the stress of our every day life. I wanted to escape and the beach is always my top choice for an escape. It's hard to let go of that hope - the hope that my whole life could change if I just lived somewhere else. It was nearly soul-crushing. To top it all off, I wasn't able to sleep well the entire time we were there and I had a migraine for 6 of the days we were there.
     Once we returned home, I struggled to accept life here and that we would be here for a long time. By Monday, it was time to get back to our regular routine whether I was ready or not. Peanut has a special one-on-one class time to help her learn her letters and sounds. I decided that I would have a chat with the teacher after Peanut's session was done. I wanted to make sure that she understood what to be watching for due to the radiation. After I explained to her that the AVM was in the language center and that Peanut could potentially lose the ability to understand language temporarily, she surprised me with her response. She told me that she had noticed already that Peanut was having more difficulty than before. She was not able to remember letters that she knew before and she incorrectly matched a sound to a letter which she had not done before. Of course, there is no way to know if this is because she had been out of school for so long or if it was an unusually early response to the radiation. By the time we went home Monday evening, I was a wreck. I just wanted to curl up in a ball and give up. I was broken-hearted over the possibilities of what lay before us. I tried to imagine how we would handle caring for a 5 year old who couldn't understand what we said to her and couldn't express herself. It was overwhelming. I found myself retreating to my room for solitude and darkness. I was angry, scared, overwhelmed (as always), and deeply sad. I just lay in the dark, trying to figure out how to let go of my fears. I prayed but felt no connection to God. I didn't have the will to go on. I alternated between crying and praying until I fell asleep.
     I am trying so hard to lean into God. To allow Him to be my strength since I don't have any left. I am trying to do better and I think I did better today than yesterday - at least I'm not hiding in the dark trying to escape reality. However, my load is heavy, the tears are always barely hidden under my smile, and I am not sure how I will make it through another day. The waiting for the side effects is awful. The added stress of finances, marriage and giving up my dreams has made my life feel nearly impossible to survive. I'm not sure how I will get through all of this but I know this: It is only by the grace of God that I will survive all the twists and turns of life.

Tuesday, March 26, 2013

Hallucinations

     While we tried to laugh off some of Peanut's hallucinations yesterday, they have become much worse and quite a concern. She started with people, sparkles on the ceiling, floating objects. She started rubbing her coloring page and I asked her what she was doing. She replied, "I'm putting sparkles on my page!"  Last night she refused to sleep. She kept seeing bugs and bees and just didn't seem able to sleep. Around 2:30 my husband crawled into bed with her and pulled out a coloring book and crayons. I slept while they colored.... for 3 hours. Once I was awake again things were clearly worse. She was seeing mice and she didn't like what they were doing. She was very agitated and we couldn't calm her down. They called a doctor in and he ordered Benadryl thinking it was a possible drug allergy. While we waited for the Benadryl to arrive and then for it to begin working, Peanut was repeatedly terrified to the point that she curled up in the fetal position. She often cried about mice - at one point saying there was a mice in her doghouse (the plastic cover they put over her IV to protect it). When we took the doghouse off to show her that there was no mouse, she started screaming that it had gone in the IV and was hurting her. She was crying in pain, waving her arm around and trying to shoo things away. We tried to fight these hallucinations by telling her that they weren't real. At one point she looked up at the ceiling and screamed "A SNAKE!!!" It was the most terrified we have ever seen her and it terrified us. We tried to comfort her, trying to rub her back or her hand and she would pull away from us - something she had never done before. I asked my husband to pray over Peanut and she said no and then threw a fit when he prayed. She has always been calmed by prayer and eager to be prayed for as well as to pray for others. She said she was too hot so we took off her hospital gown. There just didn't seem to be anything we could do to console her. There was clearly something wrong and she was not herself. She didn't sleep at all throughout the night. I sat at her bedside and prayed over her. Prayed for God to fill her with His Spirit - prayed for God to remove the scary things she saw. Finally, the Benadryl began to kick in. She crawled onto my lap and I rocked her. She still would look around and start to scream or cry. We decided to try a different approach with the hallucinations. We began telling her that we would protect her and that God was with us and He would protect us too. I asked her if we should pray and she agreed so I prayed over her. I prayed that God would fill the room with His angels. That Peanut would be protected and that these scary things would be gone. I prayed that whatever was going on in her body would be healed by God. After our prayer, if she got scared I would say, "God is with us." and that seemed to calm her down quite a bit. I quoted scripture to her - only a couple verses that I could think of but I felt the need to address the spiritual side of this. I told her that she needed to sleep. When she said she couldn't sleep I told her God would supply all her needs - even the need for sleep. I quoted that verse to her, "God shall supply all your needs according to his glorious riches through Jesus Christ our Lord." Finally, she has calmed down but she is still convinced that what she saw was truly here.
     Eventually the Neurologists came in and talked with us. They didn't feel that this indicated an allergy to medication as the meds should be out of her system. They are concerned about seizures so she will be on an EEG monitor soon. It's also possible that it's a type of migraine although she hasn't complained about a headache at all. Of course, seizures are our biggest concern because her original bleed was precipitated by a seizure. She has been having these hallucinations for over 12 hours now so they are concerned and will begin searching for explanations. Looks like we are going to be here a little longer than we thought.
     Several hours later: Well, the EEG went well. Peanut didn't even fuss while all the wires were attached to her! She sat fairly still throughout the 20 minute test and had several hallucinations. She didn't fuss again when all the wires and tape were removed. She is such a trooper! The EEG results came back this afternoon - no seizures! Thank God for that! So, we were sent home with the hopes that some sleep, being in her own environment and getting back to her own routine would eliminate the unexplained hallucinations. For the 3 1/2 hours we were home before Peanut went to bed she only had 2 minor hallucinations. Here's hoping a full night's sleep eliminates the last of these hallucinations. We are so happy to see her sleeping peacefully!

Monday, March 25, 2013

Radiation day

     Well, we made it through the day. The morning went quite well. Peanut's halo was put on and her CT scan was completed and all seemed pretty good. They put her in a PICU room and allowed us to sit by her bedside. While it was rough to see her hooked up to everything it wasn't as hard as the first time we saw her this way. The "halo" looked nothing like the name suggested. She was intubated and had the standard IVs and all sorts of monitors. 


     The toughest part of the morning was when they decided they needed to do a chest x-ray to check her right lung. As soon as they started moving her, she woke up and grabbed her tube and tried to pull it out. She was coughing and gagging and breaking our hearts. We held her down while they ran for some medicine. Of course, the meds did not sedate her. She continued to gag and fight while we held her down through 2 more doses of meds. It took about 15 minutes for her to calm down. That was a terrible 15 minutes for us. We just didn't want her to remember any of that and here she was, awake and fighting. It was also difficult because it took us right back to our first hospital stay after her aneurysm bled. They had to work very hard to keep her sleeping. As she finally calmed down this time, the nurse said, "She won't remember this but you get to." While it was less encouraging, it was said more in the spirit of sympathy. Once we got past that, the time went by much smoother. And eventually, the X-ray showed that everything was perfect as far as her lungs were concerned.
     During the afternoon, I even managed to sleep for a bit. Peanut was taken over for radiation about mid-afternoon. A couple hours later, we were at her side and she was awake but very groggy. She could barely form words and found it difficult to move her arms - especially her right arm. Her dad and I, of course, were a bit concerned knowing that the AVM is on her left side and could negatively affect her right side. It wasn't long and she was talking a little better and moving her arm a little better. By the time we made it up to her hospital room, it was clear she was having visual disturbances - double vision and hallucinations - including seeing someone we couldn't see. I asked her if that person was wearing white. She said, "Yes. And blue pants. And socks." After spending a couple hours in her room we noticed depth perception issues as well as double vision issues that were strong enough to make it difficult for her to grasp something we handed to her. She also had trouble getting her food to her mouth. She occasionally would grab for something in front of her that wasn't there. She told us she could see purple sparkles above her. And when she began to fall asleep she would grimace then relax her face then grimace, then relax over and over for a couple minutes then she would awaken. While we were able to occasionally laugh off these issues (Like when she looked at her dad, giggled and said, "Daddy has two heads." so matter of factly), we are a little concerned. The nurses have assured us that this is normal after being under anesthesia for so long. To top it off, Peanut has not been able to keep anything down. She's been sick now twice and it's looking like it could be a long night. I know we will get through this but here's hoping she manages to fall asleep, stay asleep and stop getting sick. Through it all, God is with us and we are trusting Him to carry us through whatever may lay before us.

Sunday, March 24, 2013

Tomorrow is the big day

     Well, tomorrow we head out to the hospital bright and early - well, technically dark and early as we will leave before the sun is up! :) We've had a good weekend. Yesterday was especially nice. We took the kids to see the movie The Croods and Peanut was even able to munch on some popcorn while she watched it. Pumpkin ate his whole bag of cotton candy pretty quickly and later complained of a tummy ache. On the way home we stopped at Tractor Supply Co. to see the baby chicks and ducks. We spent the rest of the day at home. While Peanut napped, Pumpkin watched Jumanji with his dad and me. Then Pumpkin and I watched the Marx Bros. Duck Soup. Pumpkin wasn't all that interested but he tolerated it and I accidentally fell asleep about half way through!  We ordered pizza for dinner and watched Phineas and Ferb. It was a lazy day for sure but it was so nice to just spend our time together as a family relaxing and enjoying each other's company. I was able to take my time packing our hospital bag and really just enjoy our day.
     Today we spent the morning at church then stopped at the store to pick up a few things we needed. Then, we had lunch followed by a great Sunday tradition - mandatory nap day! It's our way of making sure Peanut gets a nap at least once a week. Pumpkin played quietly for a little bit then came out and vegged on the couch with us and watched another movie. It's just been a movie kind of weekend! The day is quickly flying by and tomorrow will be here before I know it.
     I am still working on giving my worries to God and focusing on the good things. It is definitely a work in progress but I think I am doing well to have identified this issue and be working on improving continually. I had a sweet friend express it so clearly today, "In Michigan, spring is a faith stretching season - we have to stretch our faith to believe that spring is coming. Right now you are going through a faith stretching season." What a beautiful way to think of this! Yes, it is difficult to not get caught up in worry. But just around the corner lies one of the most beautiful times in life! Spring is full of so much promise - so much life. Spring is the season of new beginnings. What new beginnings await for us remains to be seen but it is sure to be full of promise, life and beauty.

Thursday, March 21, 2013

Maybe it's me

     At work lately there have been some changes beginning to be implemented. As I learn more about the company I work for I am less than ecstatic about their policies. I have discovered that my hopes of advancing and working more hours would be a nearly miraculous change! In the course of several conversations with my co-workers I have begun to wonder if the changes that need to be made are within me. Perhaps I need to just be grateful to have any job. Perhaps I should work harder and not keep track of that. Perhaps I should not compare myself to my coworkers. Perhaps my life is not as difficult as I think it is. Perhaps I am the one making it hard simply by my outlook on life.
     This also expands to other areas of my life. I am really struggling with depression and worry right now. I know all the answers and I know what I am supposed to do. That does not make it easy. I am so scared that Peanut will have a seizure following her radiation treatment and then a re-bleed which will put us back to where we were a year ago. I just don't know that I could go through that again. Of course, as my co-worker pointed out today, I cannot control any part of this and I really need to just trust God with this. She acknowledged that this isn't easy but still is necessary. She is right. I have to stop worrying - there is nothing I can do to change the path that lies before us. I must lean into God, trust Him to carry us through whatever may come and be grateful every step of the way.
     I HAVE to start focusing on my blessings. There are many things in my life that I am unhappy with right now. However, if I could shift my focus I think I would be much happier. The things in my life that make me unhappy would would have much less power over my outlook if I simply was focused on something else - something positive. We have made it so far and there is so much to be grateful for. I just need to start remembering those things and continually praise and thank God for them.
     So, in light of that, today I am thankful for a loving family who has allowed me my space and time to process through a lot of this over the last week or so. I have been partially physically ill but more emotionally ill. They have not questioned me but have allowed me to escape to be alone as much as I needed. Their love and support go a long way to get me through each day. God has blessed me with the most amazing husband. He is always loving and caring. He goes out of his way to take care of me. He walks by my side when I want to start something new and exciting even though he doesn't have any interest in it personally. He is ever forgiving, constantly loving and kind. I could not have come this far in life without him. He has been my crutch when I didn't think I could walk another step. I have been blessed with an amazing son. He is a light in our life. His imagination is wonderful! I love listening to his stories as he carries me away on another adventure. He, like his father, is loving and forgiving. I do not give him the one-on-one time he wants and deserves but he doesn't seem to be affected by that. He loves me through my failings. He is a sweet spirit and I love him dearly. I have been blessed with a daughter with an amazing happy spirit. Through everything she has been through, she still maintains a positive outlook and a love of life. God has blessed her with resiliency, spunk, and stubbornness. God has given me the extra blessing of sharing my home with my beautiful sister, brother-in-law and their children. I cannot express in short enough sentences the tremendous blessing they have been to me. They are always loving and supportive - even when I come up with the most hair-brained schemes. They are Christ-followers who live what they believe. They are always encouraging me and I cannot thank God enough for sending them into my life! I will choose to focus on these blessings today. I will choose to focus not on the things I could worry about but on the things that are blessing me every day.

Tuesday, March 19, 2013

Still need to talk about it...

     Today, I found myself having an in-depth conversation with my co-workers about Peanut's health issues. I was surprised by how much I found myself feeling like I needed to have that talk with them. I have worked there for 5 months now and haven't really ever talked about the details of Peanut's AVM. They were able to ask lots of questions and I was happy to share pieces of our journey with them. It does make me wonder how long I'll have this need to talk about this period of our life. I suspect it will last as long as my memory does. It's an odd path to have walked. There are so many things that even doctors were surprised by. I'm still trying to wrap my mind around everything. I am eager to put all of this behind us and yet I realize that this journey isn't over yet. Hopefully, the scariest part of this journey is over but we won't have complete recovery for anywhere from another year to 3 years. It seems like a long time but I'm sure I will look back on it and say it flew by.
     There are times that the memories are so vivid it's like I'm reliving them. What a tough journey it has been! I don't say that to credit myself but more as my own realization. Sometimes, I am able to put all this aside and attend to the regular daily tasks of motherhood. Other days, I am hit again by the enormity of all my Peanut has been through and all that lies ahead. Her next treatment - radiation will take place in under a week now. However, I don't expect getting through the first several days after that (when she has an increased risk for seizure and possible re-bleed) will be as long and hard as getting past the mark where they are quite certain that no damage was done to her healthy brain tissue. I try not to think about all the what-ifs. I try not to imagine how we would get through a complication. It just feels like this journey has been long and hard enough. I pray it does not get harder.
     On another note, Peanut's BG numbers have been all over the place lately. One day in particular, her blood sugar went from from 49 late morning to mid 400s by mid-afternoon! She has been having a lot of high readings with a few lows thrown in just to confuse us. It's definitely been hard on me lately not to mention what it does to Peanut. Her body is so out of control that it just completely exhausts her. Because she is tired, it is impossible to reason with her. So, we are back to dealing with huge fits several times a day. Her moods seem to be all over the place. This, in turn, wears me out. I have found myself praying that God would just take her diabetes away. I know I just need to focus on today but when I think about dealing with these lows and highs for the rest of her life, I'm not sure I can do it. I'm not sure how to handle the worry that comes along with lows and highs. Once again, I know I just need to give it to God and trust Him. But in the midst of the rushing to get her BG back to a healthy level, that is hard to remember. And in the quiet moments after her sugar has returned to a healthy level, it's hard to process all of that through a filter of trust. Still a work in progress! :)

Friday, March 15, 2013

Something bigger out there?

     Do you ever get that feeling that there's got to be something bigger in your life? That you should be doing more? Having a bigger impact? Doing something of greater importance? I am there today. I know that the work I do as a Momma is of the highest importance and I love being a momma. It's the things I do apart from being a momma that leave me wondering. I keep thinking there has got to be a bigger job, better relationships, more that I should be doing. I work in a day care but our days are eaten up with the normal tasks of diapering, feeding, cleaning, napping, feeding, diapering. :) I just think there has to be more out there. What if my life has little impact because I wasn't brave enough to step out, take a risk, make some changes? Maybe all that I need is some change. Maybe there is something bigger waiting for me out there - it's just OUT THERE - not here. I am ready for a change. I am ready for a bigger life. I just don't know how or where to start.
     Then, of course, there is always that feeling that there must be a better life out there too. Maybe that's just my old "grass is greener" syndrome kicking in but it feels like the meaningful moments in life are few and far between. Is that just an indication of my own lack of action or inability to recognize those moments? I guess I'm just feeling introspective today. And I'm hoping to find a reason to hope for more than this. I'm hoping for a joy-filled life. I'm hoping to someday talk to my children and hear them tell me how wonderful their childhood was. I hope we don't screw this up.

Monday, March 11, 2013

Looking up

     Well, since my last post I have done much better having a positive attitude. I am really focusing and reminding myself how very blessed we are. It helps that this weekend we had some bright sunshine and the temps warmed up a bit! It was almost feeling like spring for a minute there! Tomorrow our temps come back down but I will continue looking up!
     The school year is nearly finished. It feels like just yesterday we were getting the kids ready for their first day of school! I was so nervous to not be home schooling this year! The time has really flown by! We are almost done with our 3rd quarter! Both kids are doing great. However, we are struggling to decide whether to hold Pumpkin back a year or not. He is doing great academically. However, his teacher feels that the struggles he is having are because he is young. Since he is asking to be home-schooled I wonder if holding him back a year might change things for him. He is such a great kid and I'm just not sure what this could do to him. I want him to be a confident leader. It is a difficult decision that we are approaching with a lot of prayer and open communication between us and Pumpkin's teacher.
     On the other hand we are certain Peanut will be repeating kindergarten. She has missed way too much school to not repeat. On top of that she has shown some difficulty learning things early this year - before her AVM was partially treated. She doesn't care - she loves school and I don't think she realizes yet that all her friends will be in another grade. She makes friends so easily and loves everyone so I don't have any concern over this decision.
     I will continue making my focus positive and seeking to acknowledge every blessing God sends my way! It will be wonderful to see what this week holds!

Saturday, March 9, 2013

Philippians 4:12-13

     "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength." What a challenging passage! My husband and I were able to have a long discussion about this earlier today. We both feel that we are struggling with being content with our life. There are plenty of things we want - most of them requiring money - and some things we would like to be rid of - mainly debt! :) However, as a Christian, I am supposed to be living a life of trust in God and contentment with life. It is so easy to forget that I am incredibly blessed. It is so easy to picture an "ideal" life and compare it to my messy, busy, interrupted, and sometimes chaotic life. The result is discontentment. Granted we have had a rough year. However, that year is behind us!! I need to be present in our life today. I need to move forward and pursue the things I love. I need to treasure every moment I can get with my children. I need to make memories with my family. I need to contribute to the running of the household. I have sat back for far too long and just let things go. This is it. I have decided to move on. To refuse to allow a medical diagnosis to determine my whole life. Yes, it factors in but I choose to keep that part of our life from taking over everything. I have wallowed in self pity long enough. I will rise up. I will find the true me. I will work hard at anything that is put before me. While I may not completely understand this secret to contentment, I am going to start moving forward towards complete contentment - no matter what our circumstances. It's easy to point my finger and say "that is why I am not happy. That is why I am not content." However, I've lived that way long enough to know that it just leads to misery and depression. I will not give the devil this foothold in my life. I will choose to focus on the positive. I will choose to contribute in a positive and loving way to my household, my job, my volunteer work, and my relationships. This will not be as good as it will ever get. Things will change because I will change my outlook. And when this gets hard, I will lean into God to be my strength and empower me to be content. We are blessed. I have an amazing family and our journey is about to get a whole lot brighter!

Monday, March 4, 2013

School days, school days

     Lately Pumpkin has been talking about being home-schooled again. I have started to get little details from him that have surprised me quite a bit. For example, he told me that he got in trouble a lot. When I asked him  why he got into trouble he told me that he got in trouble for pouting. That just made me wonder what they were doing to my son that would make him pout. Yes, a bit of the mama bear coming out in me. Tonight I started asking him more pointed questions - were most of his class mates his friends? Was anyone mean to him? Did anything make him sad? He told me that there was a time he had kind of scrunched himself under his desk and his classmates stole his book from him. He said he took it back and that was the end of that problem. However, my husband and I were quite upset to hear that he was hiding under his desk! We asked if he did that often and he said yes, sometimes. This has so upset me that I'm not even sure I want him to finish out this school year there! Again, the mama bear/over-reacting protective mama coming out in me. It just breaks my heart that my son is having a negative school experience. I have heard many people say that this grade is just not the best group they have seen. I've also heard that the current grade below Pumpkin is a great group of kids with great, God-serving, spiritually-minded parents. If we follow the teacher's recommendation and hold Pumpkin back a year it seems he would be surrounded by better friends. However, I now have a son who really wants to be home-schooled and no great answers to his questions about the possibility of home-schooling. I just am torn. I don't want my baby to be upset and have so much to handle - it's been a tough enough year without adding junk happening at school! On the bright side, I don't have to make a decision right away. Also, the things he's told us about aren't that bad - they just are less than what we were hoping for. Overall, it has still been a good experience. I just wish our eyes had been more open when it came to the things Pumpkin was experiencing. I wish we had been more involved in his classroom so we could have seen some of these things in context. I wish there had been some sort of entry-test so that Pumpkin could have been placed in the grade below his current grade. I suppose this is the way it was supposed to be. Perhaps if I had known about these things when they happened, I wouldn't have been able to handle them. Also, home-schooling would not have worked at all this year. So, I am left with some thinking and a lot of praying to do. Either way, my husband and I need to get on the same page so that we can approach this with one mind and lots of support for each other.

Saturday, March 2, 2013

One year later

     Hard to believe it was one year ago that we rushed Peanut to the ER for what turned out to be an aneurism bleed (within an AVM) in her brain. One year ago today we started the roughest year of our lives. One year ago today we weren't sure our baby girl would survive the night, let alone another year.

     One year ago changed our life forever. One year ago took away our "normal" life. One year ago took away our simple life. One year ago forever changed me. This day has been burned on my heart. I will never walk through this day quite the same again. This day is not an easy day for me. So many memories are flooding back to me threatening to spill over in tears at any moment - no matter what else I may be doing at the time. This is the day that my heart was torn to shreds and I am still trusting God to mend it and restore me. 
     Peanut, on the other hand, doesn't even realize what today marks. She is still carefree, happy, life-loving and miraculously, healthy. We still have her. She is still the same girl she was before all of this. That alone seemed like an impossibility one year ago. She is a walking, breathing, learning, loving miracle from God. We chose not to mark this day off as anything unusual. We stuck to our regular Saturday schedule. Both Pumpkin and Peanut had a young authors conference at their school so we spent the morning there. It's amazing how different this day is from last year. We will spend the remainder of this day relaxing at home enjoying our family.
     These days will get easier I am sure. We will eventually return to a normal life. We will eventually stop having appointments with so many specialists and Peanut will eventually be risk free from this AVM. Until then, I lean hard into God, my family and closest friends. Without all the prayers said for Peanut and all of us I don't think we could have carried on this far. 
What a difference in our beautiful baby!

Thursday, February 28, 2013

Tired...

     Well, it's been a long day. I feel like I'm still getting used to a schedule with a job in it! I started working at a day care last November. It's the first real job I've had in over 7 years! It's been a big change and my working days are certainly my tiredest but I am getting through it and actually starting to enjoy parts of it. (Not the diaper changing part...) ;)
     I feel like life keeps moving faster and faster - as I was often warned it would. It wasn't that long ago I decided to really work at this blogging thing. And now, I seem to struggle to find the time to blog my goal 2-3 times each week. Time just goes by so quickly. Tomorrow begins the 3rd month of this year - how is that possible?!
     It has already been nice to be able to look back over my posts and see where I've been emotionally. Just a few posts apart I see that I was distraught over the thought of Peanut losing her hair and then that we had cut 11 inches off to donate to wigs 4 kids! While there is just one post that separates those two, there was a lot of processing, feeling, thinking and working through my emotions. I'm still not thrilled about the idea of Peanut being bald but the fact that she just accepted it so easily has certainly helped.
     On a separate note, I cannot believe how sweet my son is! Pumpkin continues to surprise me with sweet little things he does. The other day he gave me a card he had made. He drew a rainbow heart on the front and printed "to Mom" in his boyish letters. Inside the card he wrote how much he loved me. He also said he would help me on my bad days. So sweet! It's been a rough year on him, I'm sure. With everything Peanut has been through and all the attention that has required from both me and my husband, he has been left behind way too often. He clearly has needed some extra time with me lately and I hope when he gets older he will have lots of memories of us together to remind him how much he is loved. He is such a good boy and so tender hearted and sweet! He brightens my world! It seems anytime we've been apart for more than an hour or so, he runs to me and gives me a huge hug when he sees me again. I know that won't last so I try to truly cherish those hugs and his desire to spend time with me. I hope he can see my heart in the things I do with him. It is hard to give him the time he really deserves and even needs. I just hope that I am able to show him that he is always important to me, always loved and deeply treasured.

Tuesday, February 26, 2013

Proud of my baby

     Over this past weekend my husband and I decided that we needed to sit down and tell Peanut all the details of her next treatment. A good friend had talked with me about Wigs 4 Kids (http://www.wigs4kids.org/) and gave me the idea of having Peanut get a haircut and donating her hair. So, we sat down and began talking about this next treatment. I told her that her hair might fall out. I told her that there were kids who had a disease called cancer and that their hair was gone for a long time but that hers would probably grow back pretty quickly. I explained that there was a company who made wigs for those kids and that you could have your hair cut and donate it for a wig. As hard as this all has been for me and my husband, Peanut just took it in stride and immediately latched onto the idea of donating her hair. I was able to show her photos of my friends daughter who has been battling leukemia so she knew what it would look like when she started to lose her hair and then after we shaved her head. I told her that she would be allowed to wear hats to school if she lost her hair. She asked lots of questions and wanted lots of details. As well as I could, I explained to her everything she wanted to know. The next morning, she and I went out to get her hair cut. It was an emotional morning for me but a truly exciting morning for her! In fact, she was so excited that it messed up her blood glucose readings! :) She was great at the salon and was thrilled to see the hair she could donate. We left the salon with a beautiful little girl with a short haircut and a huge smile on her face and a certificate for her first haircut. That night at dinner as we all shared our best part of our day, we were so touched to hear Peanut say that her best thing that day was that she was able to cut her hair and donate it "to the wig place". So precious! Our five year old little Peanut sure does make us proud... and teary-eyed.


From long haired beauty to short haired cutie!

Tuesday, February 19, 2013

James 1:2-5

     Yesterday was a rough day for me. I felt like my emotions were catching up with me. During the evening while I was sitting beside my husband relaxing I would find myself starting to cry. From the outside I appeared to have no reason to cry but I was turning over the whole medical situation with Peanut over and over in my head and I would just be overwhelmed - mostly by the hair loss. That in itself seems strange to me. That is not the biggest issue we have here. It is not the biggest hurdle or the most impact filled event in this whole journey. However, it is an outward sign that something is not right. It is our first outward sign that she is sick. The AVM is sinister in that it lies in wait - sometimes nothing happens, other times, it causes all sorts of problems. And even when problems occur, they are not easily seen. Peanut's AVM resulted in almost no outward signs. A stranger and most friends would never have known by looking at her that she had anything wrong with her. Diabetes is also an invisible disease. Now, everyone will know that something is wrong with our daughter. She is not healthy. I don't think this bothers me because I don't want people to know this about us but simply because it makes me feel vulnerable. It will be more obvious that I am struggling with this heavy load for my daughter. In a quiet moment alone, I wept silently over all that we had been through and all that lies before us. I felt that we were being attacked from all sides, that I couldn't spot the good things because of all the bad things surrounding us. I crawled in to bed, drained, tired and ready for some major changes to take place in our life. I picked up my Bible and started where I had left off last time - the first chapter of James. I couldn't finish reading the verses through my tears but it didn't matter because I knew what they said anyway. "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously without finding fault, and it will be given to him." So much in these 3 short verses hit me. First, "Consider it pure joy..."  How could I find joy in our circumstances? I was so overwhelmed a lot of the time - but never overwhelmed with joy, or even gratitude, or anything positive. I cried out to God asking Him if I could be done facing these trials. I wanted to get to the part where I did not lack anything. I wanted to be complete. I knew I needed wisdom. I hadn't been able to understand any of these trials or how to solve even one of them. And then I was hit with that last part, "...who gives generously without finding fault..." That just blew me away. God was not finding fault with me - even though I knew I had a lot of faults for Him to see. He doesn't care how much I screwed up. He doesn't care if I brought some of this on myself. He loves me and He gives generously to me when I ask. He will give me the wisdom I need to handle each of the trials that come my way. He will stand by my side so that I can face trials of many kinds. He is a good Father. A Loving Father. What joy it is to have Him speak so directly to me and lift me up from the despair I was trapped in!

Saturday, February 16, 2013

It's just hair... it will grow back

     Well, we made it through our last appointment for Peanut. We were a little concerned about sitting in a waiting room with our by all appearances, healthy daughter and being surrounded with children fighting cancer. However, we didn't realize that this office is not a pediatric office. These appointments are always heavy for me. We talked about the next step in Peanut's AVM treatment plan - radiation. We had to sign a consent form for the procedure which meant we had to go over all the possible risks. I understand why they have to do that but it doesn't make it any easier when they are talking about these risks affecting my 5 year old daughter! Some of the risks are blindness, decreased intellectual function, permanent tingling or numbness to the face, and cancer later in life. A lot of these risks were decreased because of the location of her AVM. The procedure itself will take all day. First they will attach a "halo" to her head and then they will do a CT scan. The doctor's will then have a conference to decide exactly what dose of radiation she will receive. Then, late in the afternoon she will actually receive the radiation. She will be under anesthesia the whole time so we will stay the night in the hospital to monitor her as the anesthesia wears off. It will be a long day for sure. And the one thing that creeps up and bothers me when I know it shouldn't is that she is likely to lose her hair. Her hair has never been cut. She's had a trim here and there but never cut. She fell in love with Rapunzel from Tangled and had decided to grow her hair out like "Tangled". Her hair is about waist length now and it breaks my heart that she may lose her hair. I haven't even begun to think of a way to approach this topic with her. Of course, that probably means that she won't even care! Either way, her procedure isn't until the end of March so we are still waiting. As we wait, her risk for a re-bleed increases. In addition, the radiation takes 1-3 years to be effective so her risk just increases continually. I constantly remind myself to just trust God. He has carried us this far and He won't let us down now. It's a lesson I am still struggling to learn. There are times I think I won't ever have it learned enough.

Friday, February 8, 2013

Snow day! :)

     What a beautiful snow storm we have had! I love the hush of the world around us after a snow storm. This morning was just precious. Most of the house was still sleeping, the world outside was quiet and calm and everything was covered in a new blanket of beautiful white.
    

      While I am completely ready for spring, this is one thing I love about winter! To make a beautiful morning more perfect, my boss let me know I had the day off and could enjoy this day at home with my kids! We worked on Valentine day cards after breakfast and when their energy seemed over abundant, we went outside to shovel. This afternoon, the boys are playing happily together, Peanut is snuggled up on the couch after her tasty lunch of Cheerios, banana and milk watching some of her favorite PBS cartoons and I have a minute to sit quietly and appreciate the many blessings of my life. The snow angel just outside my window is a beautiful reminder of the blessings we have received over this past year. While they may not always act the part, our children are angels sent from God to bless our lives and test our faith. And God has blessed me with two angels. What an overwhelmingly wonderful gift!
      Some things in life (or maybe most) are easier to see through a rear view mirror. As I look back over the last year or so, some things become clearer. I have been on daily meds to prevent migraines for over a year now. The last time I had an appointment with my neurologist, I told her I wanted to quit taking them. I had noticed a numbness when it came to my emotions. I had become tired and uninterested in things that I used to love. I had all the classic signs of depression but felt that the meds were the issue. Because of those and other issues and the fact that my migraines have been so well controlled, she has allowed me to start decreasing my dose. As my dosage has dropped, I have noticed several things. First of all, I'm not as tired as I used to be. Also, I feel like I'm more myself than I have been in a long time. I feel my old passions coming back - not exactly as before but new forms of old passions. I just feel more me. It makes me wonder if I would have responded differently to things if I had not been on these meds. Either way, I am eager to be off of them completely and I am looking forward to getting back to being myself.
     I am blessed beyond belief. I guess that is the over-riding thought to everything today. I am blessed. God has blessed us in ways we couldn't have even imagined before. We are moving forward, we are making progress in so many different areas. God has blessed us in such incredible ways. We enrolled our children in a private school this year instead of home-schooling. The entire process has been a blessing. We have been blessed by the people we have met and formed relationships with. We have been blessed by the staff of the school. Just recently we were overwhelmed with the blessing of a scholarship for the kids that covers nearly all of their tuition. We weren't sure how we could pay for this school that we felt was the perfect fit for the kids and was where we are meant to be and yet God made a way. Obviously, we have been blessed with a God-intervening healing. Peanut has come so far from that day she had to be hooked up to all the wires and monitors. Her healing has been a remarkable one full of events and moments I will treasure forever. Her healing has changed all of us in remarkable ways. As we continue on this journey to complete physical restoration for Peanut, I know I can place all my confidence in God. The doctor's told us from day one that the longer an AVM goes untreated, the higher the risk for a re-bleed. However, she has had no problems. Every step of the way, things have gone better than the doctor's expected. They are now preparing to do the last step in her treatment - radiation. This one time dose will take 1-3 years to be effective if it works. The doctors believe Peanut has about an 80% chance of radiation shriveling up the AVM. I could not have imagined that this is where our journey would lead us yet here we are. We are coming up to the finish line of treating the AVM and we are all still here! We are still a family. My husband and I are still in love. We are still healthy and happy! We are blessed. Through the many, many doctor appointments, I began searching for a job that would help pay our bills. God blessed me with a job within the school so I could be right there with both my kids. Above that, the events that led up to me accepting that job clarified for me what I want to do in the next several years of my life. I was given a choice between two jobs that ultimately asked the questions: what do you want to do? What is important to you? Where are you headed? I am so thankful that I was forced to really analyze my life and answer these questions. I am thrilled that God provided me an opportunity to look into myself and see what it was I was searching for. I am incredibly thankful that God has given me a purpose and a window to see what that purpose might be and how I can achieve it. I am blessed. I have an incredible family - parents, brothers and sisters. And I have been incredibly blessed to share my home with one of my sisters. She has been such a blessing to me. I'm sure she can't begin to imagine how much she has helped me. Her constant love, kindness and understanding are a God-send. She has managed this household for over 6 months now and honestly, I don't know what I would have done if she had not been here to make sure dinners were made, the house was cleaned, laundry was done and food was always in this house. She and her husband have worked so well with us - they are both such a blessing. They have carried us through the toughest times of our lives. They have been there at our side through thick and thin. They are precious friends. We are blessed. What a loving God we serve! We are blessed!

Thursday, February 7, 2013

Memories

     This week I met with a young mother from my church who is in the midst of what I am certain is the most difficult thing she has ever been through. Her daughter is in PICU and has been in critical condition for a week. It has brought back so many of the emotions I faced while Peanut was in PICU. However, Peanut was only truly critical for 2 days, then we moved on to recovery and treatment. Those 2 days were the hardest of my life. I was overwhelmed with the helplessness I felt and the hopelessness that surrounded me. While I asked others to pray fervently for Peanut's healing, I was unable to muster enough faith to pray for that same thing. I can imagine what this mother is going through. She is in my thoughts and prayers from the moment I awaken until I go to sleep at night. I want to be there with her - at her side. Yet, she hardly knows me. And, because I can so clearly remember those days, there is not much I can help with by being at her side. Prayer is a mighty tool and I have been praying fervently for her daughter as well as the family. It's a difficult thing to imagine if you haven't walked the road yourself - facing the possibility of your child dying. Imagining how life could possibly move forward without this precious child in your arms. Yet, life does move forward. It's almost infuriating. It feels like everything should just stop. No holidays, no laughter, no enjoying anything. Your daughter's life is at stake, so how could anything else continue? Our journey moved quickly at the beginning. I cannot imagine living those first 2 days for over a week! However, it has taken a year to process some of it. I still struggle with the memories of that first hospital stay. I still haven't healed from it all. I remember the day I realized that while Peanut had received her healing, I still needed my heart to be healed. It felt like my life had fallen apart and my heart had been ripped to shreds. You don't just recover from that because the pieces get put back together. I know this journey for my friend will be a long one. I know it will be one of the most difficult things she has to go through. And I know that our God is able. He is able to hold us while we weep. He is able to love us while we walk through a valley of fear and death. He is able to sustain us when our strength has been used up. He is able to continue healing our hearts long after the one thing we hoped for was given to us. He is able to be all that we need. He is able to be our strength, our love, our voice, our hope, our salvation, our Father. He is a good God. He loves us dearly and He will provide for us at all times. I continue praying for my friend, her daughter and their family as I continue to see a need for healing in my own heart.

Thursday, January 31, 2013

learning to love life through the struggles

     This morning, as I was thinking of all we've been through in the past 14 months, I was burdened with the heaviness of it all. Then, I heard a whisper in my spirit, "What is God trying to teach you through this?" Yes, my life has not been easy lately. Yes, we have a lot of medical struggles. Yes, I am ready to move on to a new chapter of health, laughter and loving life. However, I think before I can move on God wants me to learn to love my life even when life is hard. Even when my daughter has a life threatening birth defect that has not been taken care of yet. Even when I struggle through "bad migraine" days. Last night I tossed and turned, awakening often to the all too familiar intense throbbing in my head. And this morning, as my medications begin to work, I am reminded that this life is temporary. This life is my chance to learn to love God and love the life He has given me. I share my home and life with my sweet sister. We have a wonderful, loving relationship. And God has put us in this home in order to care for one another. She takes care of me when I am down - emotionally, physically or spiritually. And when she is down I am able to do the same for her. She is a precious child of God and God often uses her to remind me of the things in life that are truly important - namely, serving, loving and praising God. I am a blessed daughter of the King most high. I am a daughter of the One who created everything and everyone I love. And if that cannot carry me through these momentary struggles than perhaps the problem is not found in life itself but in my heart. There is so much I have to learn! I will choose to be positive through the physical pain, heartbreak or any other difficulty that comes my way. I choose to love God. I choose to serve Him - regardless of the circumstances of my life. There is so much that I can change by just changing the way I think. I will remind myself that I am blessed. I will remind myself that it is God who has carried me this far. If I were left to do it on my own I would have not lived to see this day. Yes, I have a daughter with one scary diagnosis and another life long diagnosis that at times seems to take over my life. But, my faithful Father is more than able to carry me through this. I have been blessed with an incredible family - sisters, brothers and parents who serve God and speak truth into my life. I cherish my time with each of them. I have been blessed with an amazing husband and two wonderful children. My husband surely has earned an eternal blessing and reward for all the ways he has cared for me - even when I am not easy to love! My children have been accepting and loving of me and their life - even through all the changes of this past year. This morning when I got my warm, tight, good-morning hug from Pumpkin, I told him either his dad or I would pick him up after school. I told him I might not be able to pick him up because I had a bad headache. He kept his one arm around me and with his other hand, gently and lovingly rubbed my head. He has such a sweet, tender spirit - what a gift from God he is to me! We are blessed to live in a country where we are free to worship God as we see fit. We have so many freedoms that I often take for granted. I am blessed with a home, an incredible church, and so many friends who pray with me as I encounter struggles. Friends who love me through everything. Friends who point me to God and remind me that He IS in control and that while this life is temporary and there is so much to look forward to when I get to heaven, there is also so much to love in this life. I pray that I am able to embrace life and begin seeing the positive that surrounds the struggles. God is active in my life. God has worked miracles on my behalf. God cares and sees and knows. And God deserves all my praise, worship and honor. I only have one life to learn to love God, others and this life itself through everything that comes along my path. I better get busy!

Sunday, January 27, 2013

A busy, fun weekend

     Well, we made it to the deadline for the science project and had it finished on time! Let's not talk about the 4 1/2 hours we spent on it the night before it was due! :) I am so proud of Pumpkin and his first place prize! He worked so hard documenting everything and getting the display put together. It was a fun experiment involving M&Ms and "predator" friends!
    This weekend was a busy one for us - not one day of sitting at home staring at a screen. Which, in my book is a good thing although I often vote for the day on the couch instead of going out and doing something. On Saturday we went to see the snow and ice sculptures at SnowFest. Then we went to the Science Fair to see how Pumpkin did (Did I mention he got first place?! So proud!). After that, we were finally able to make it to my parents house for a visit. We hadn't been able to see them since Christmas! We typically try to make it over to see them once a week but we don't go if any of us is sick. So, this time of the year we just don't get to see them as often as we would like. Then this morning, Pumpkin had a school concert. He did great and his class sounded beautiful! After that we attended church - another good service although I didn't quite get to hear the entire sermon thanks to Peanut's sudden insistence on a snack (which I hadn't brought with me). We did manage to get a little quiet down time after church - I even took a nap after lunch! This afternoon, Pumpkin and I had a date. Usually we go out on a Saturday but this time there was a mother-son event at a local bowling alley so we took advantage of that. It was a lot of fun! Pumpkin had a great time - even though we quickly realized we were much better at Wii bowling than actual bowling! We had pizza and root beer - the first time Pumpkin had root beer and he over-indulged. Life's little lessons - today's lesson was too much caffeine can lead to a headache. On our way home, we stopped at McDonald's for some chocolate chip cookies. I am really loving these dates that I get with Pumpkin. It all started thanks to a conversation with our friend. We were talking about how much attention Peanut gets at the hospital - from mom, dad, friends and family. We also mentioned that we felt bad because Pumpkin never got that kind of time with us. Our friend strongly suggested that we begin taking Pumpkin on dates. He said no matter what special things Pumpkin does with other family and friends, nothing can equal special time with mom and dad. So, we've started taking both kids on dates - one every weekend. That means that each of the kids gets one date with mom and one date with dad every month. It has been a wonderful thing for us! I hope the kids treasure these times as much as we do!
     We are quickly approaching the final treatment for Peanut's AVM. I am eager to begin the countdown to complete recovery from this issue that has overwhelmed our lives. I am amazed that time has flown by so quickly - it's almost been a year ago now! It's hard to believe it's been that long. But I am really ready to move on to the next chapter of our life. It seems like I've lived the last year numb. There is so much that has gone on around me but I've felt unable to be a part of most of it. Just getting through Peanut's medical issues has used up every ounce of energy and emotion I have. I am ready for that to end. I am ready to love life, to laugh often, to dance with my children, to truly enjoy the special moments of an ordinary day. I am ready to live again and not just get through our days and weeks. It is time to move on. I look forward to discovering what life holds in this next chapter. Life is full of twists and turns and I think our next turn is going to be a fantastic and wonderful adventure!

Wednesday, January 23, 2013

Science takes over our life...

     Having never participated in a science project, I had no idea of what to expect when Pumpkin decided he wanted to participate in the Science Fair at school this year. Now, the deadline is looming and I am lamenting our lack of action in the days after this decision was made. I had no idea how long documenting all the results would take! The experiment itself took maybe 2 minutes. However, interpreting the results is quite the lengthy process! On top of that, we are doing our best to see that Pumpkin does most of the work himself. So, the graph that I could complete in under a minute, takes him 5 minutes. I love that he's learning and that he's working so hard at this science project. However, I had no idea it would take over our life. We spend hours every evening working on this project. The deadline to set up your display is Friday. And we haven't even started putting it together! I don't do well under pressure apparently. I am so preoccupied I feel like I can't think! I am having to make notes about every little thing. Things like: remember to bring the kindergarten snack in the morning, call the doctor about upcoming appointment that doesn't work with our schedule, do homework with Peanut. I am hoping that in the end, Pumpkin is satisfied with the results and is glad he decided to do this. Of course, I am also hoping that he earns some sort of prize too!
     In the meantime, we are continuing to move forward with Peanut's AVM treatment. She had her MRI this week and did great. It was a complicated hospital visit because of her multiple diagnoses. We were thrilled to come home shortly after the MRI was completed and Peanut was wide awake. Of course, we won't know the results for a little bit. I was hoping we would have a date for the next step - radiation - but we weren't able to get that yet. I assume, we will have that when we go to the the MRI follow-up appointment.
     So, we are busy but doing good. I am treasuring my time with my children and husband and continue to be amazed at how quickly time flies. We are approaching the one year anniversary of Peanut's brain bleed. I'm not sure how that anniversary should be marked. Should we celebrate the year we've shared that we weren't even sure we would get? Should we let it slip quietly by? Should we have a big party with family and friends? Should we pretend that day is nothing special? Only time will tell how we spend that day but I know my mind will be filled with the images, emotions, sights and sounds of that day. It is incredible to see the changes from that night to this day. We are blessed with a bright, healthy (despite a life-threatening birth defect), happy, and energetic daughter! We look forward to many, many more years as a family of four.

Friday, January 18, 2013

A good week

     Well, today I had an appointment with my migraine specialist. I am excited to be taking fewer meds now! She agreed that it is time to take me off my daily meds and see if I can go without it without getting too many migraines. This med has many side effects and I am eager to see how much changes when I'm not on this medication. Probably the most annoying side effect has been the mental fog it puts me in. I just can't seem to find the words I want to say what I am thinking. In the coming weeks, it will be interesting to note which things were caused by my meds and which things are just simply me! :)
      Next week starts off with a hospital stay. Peanut is scheduled to have an MRI and her allergy to the dye requires steroids which affects her diabetes and then requires careful monitoring. For us, this visit will just be routine - nothing major, just a few hiccups to work around. We should only be in the hospital for one night which we are grateful for. It's always hard to stick to a routine (or get a decent night's sleep) in a hospital. The MRI will map out the AVM. After the MRI, they should be able to schedule her radiation treatment and then it's a waiting game. We are glad to be this far into the process. We are all too aware that things are not "safe" yet. For example, today - one of the few days I did not spend up at the school - Peanut fell on the playground and hit her head. We got a call from the school and my husband went up (since he was out in that neighborhood anyway). It was a very tense 15 minutes for me as I waited for a call to tell me that everything was ok. I tried not to worry but found myself getting more tense with every passing minute. I began to wonder if I should be throwing things in a bag for another long hospital stay. I should not have worried - she was fine. Thank God! She was back in her classroom before too long and went through the rest of her day as if nothing happened. I sure was excited to see her - happy and healthy - at the end of the school day! I don't know if I will ever learn the lesson "cast your cares upon the Lord" completely - it is always a struggle. I will keep working on that.
     This week has been a good one - filled with little moments of laughter, blessing and love. The other day, when Peanut discovered that she didn't have any clean pajama pants, she just couldn't handle it. So, I found a pair in the washer and tossed them in the dryer for a few minutes. She pulled them out and deemed them dry enough and changed into them. A few minutes later she came out of her room whining, "My pants are making me sockin' wet!" My husband and I couldn't help but laugh and then had about a 15 minute conversation about how much we didn't like being "sockin' wet". Another example of Peanut's own language is a "tomato storm". Anytime she talks about a "tomato storm" I don't correct her pronunciation of tornado because it makes me laugh every time! God has reminded me several times this week that we are so blessed. He has provided for us in so many amazing and unique ways! He has also reminded me how much our family is blessed simply because we are a family. Both of our children are happy and fairly healthy (aside from Peanut's issues which are working towards being resolved.) So, I end this week feeling at peace, blessed, calm and happy to be with my family, relaxing as the weekend begins.

Monday, January 14, 2013

If life were more perfect...

     I have been thinking a lot about what I would want my life to look like if I could have it exactly the way I wanted it. What I have learned is that there is no way for me to have everything I want at the same time! So, hopefully each of these things will come in a different season of my life and at the end of my life journey, I will have some truly remarkable stories to share with my children and grandchildren.
     I have a huge desire to go back to school. I am not willing to go into debt right now for that and I honestly couldn't handle school right now. I would have to get past some of Peanut's medical issues and find a more stable time in my life to make that work. I would love to earn a Master's Degree in Child Psychology and/or education. I loved my years in college but find myself now with a photography degree I just don't have any interest using. Ultimately, I would like to work as a Child Life Specialist. I never would have known this field existed if it weren't for Peanut's brain AVM. A Child Life Specialist teaches children and their families how to cope with some of the most difficult times in life - times of illness. They have been a God send to us! They have taught Peanut how to handle pain, new procedures and tests, how to become comfortable with all the medical paraphernalia in her room. They also teach the parents how to help their child and how to work through this difficult time themselves. On top of all of that, they also help assess siblings' understanding of what is going on and help fill in any gaps they discover. There is just so much they do and I have been blown away by their ability and desire to stand by the family and help them walk down this incredibly tough road. I would love to someday have a job working as a Child Life Specialist. Just another thing to add to my list of to-dos. :)
     I spend quite a bit of time volunteering in my daughter's kindergarten room. I thoroughly enjoy it and would love to spend more time volunteering in the kindergarten rooms. I love watching the children grow and learn and I love discovering their unique personalities as the year progresses. I enjoy the friendships with the teachers and being a part of something that I feel is one of the most important things in life - education. If life were more perfect, I would not have to work and could volunteer in the school as much as I wanted while making time to pursue my master's degree.
     One of the most important things to me is that I develop deep, lasting relationships with my children and extended family. I don't feel that I am a spectacular mother. However, with God's help I know I can reach this goal. I want to be a huge part of my children's lives - all through my life. I want to babysit my grandchildren and share vacations together. I want to share interests and passions. I want to always be sincerely interested in whatever interests my children. I want to become a better wife, mother, sister, daughter, friend and eventually, grandma. I want to share rich relationships with people from all walks of life. I want to be known as a true friend who is always reliable, loving, caring and giving. I want to give of myself before I worry about taking care of myself. I have so much to learn in this area. I don't feel like I have all the tools necessary to be as great a friend as I'd like to be. However, I am willing to become better. I am so thankful for the relationships I have now and the patience and grace that is continually extended to me. I am overwhelmed with the kindness of my friends - new and old. :)
     As I continue this journey, I want to travel! There is so much in this world to see and do and I want to be able to point to all sorts of things and say, "I was there. I did that!" I want to spend some time in all sorts of places - maybe a summer in California, several months in Europe, missions trips, safaris, lots of vacations and cruises, photos and memories from all over the globe! I love traveling. I love seeing new places and exploring new areas. I haven't had a big trip in way too long - over 10 years! I hope the rest of my life journey includes lots and lots of traveling!
     Of course, there is no way for me to know what this life will bring, but I hope I am able to embrace whatever may come and always see life as an adventure. I want to love being alive and just enjoy the ordinariness and incredible uniqueness of my every day. I want to embrace life and live every day to the fullest. I want to learn to appreciate a quiet, calm, even boring day at home as much as I enjoy the most adventure filled day of my life. I want to show my children that life is FUN! It is full of adventures if you just know how to see them. What an incredible life awaits me...who knows what is coming around the next curve in the road!! :)

Saturday, January 12, 2013

A little bit of gypsy in me...

     Well, this happens fairly often with me but it's always annoying. I get the urge to pack up and go - anywhere but here. It's not that I have problems I am running from or anything like that. I just know this world is so much bigger than the few communities I live in. There's a whole world out there and I'm just sitting in the same city I've been in since I was 6 years old! In fact, the home I live in now is less than 5 minutes away from the home my family first lived in when we moved to Michigan from Ohio. I just feel like the years are flying by and I'm not taking advantage of all the opportunities that exist in this country. I guess if I am 100% honest, there is a little bit of the wanting to run from things here in this mood as well. The economy in Michigan was hit REALLY hard and still isn't recovering. While other states seem to be making progress we still seem to be struggling. Jobs are few and the pay is low. I'm ready to leave all this behind and start over fresh in a new state - preferably one with more sunny days than we have here in Michigan! I look at all we have here and think, yes, I could leave it all behind to have a fresh start somewhere new... and sunny! Maybe it's just the gloomy weather combined with the stress of daily life. Maybe it's just time to take a vacation. Whatever it is, I feel it rising up in me - this huge urge to run and start over. A bit like the movie Chocolat I suppose. (LOVE that movie!) Unfortunately, as I type this I am completely aware that this is not the path my life will take. In fact, I won't even see a change of scenery for this day! It can be frustrating but it is a good time to remind myself of my blessings. I am a mother to 2 amazingly wonderful children. I have the most loving, caring, doting, sweet, unselfish husband I could have ever imagined. I share my home with my big sister who I adore and her great family. While I am ready to sell the home I live in and move out to the country, I have a great home that provides the shelter our families need. Our bills are paid. God continues to work out our finances - usually at the last minute when I think it is too late. My children attend a school that continues to amaze me with their care, ministry and clear heart for God. I am able to be at the school with my children every day. I have a job that helps our budget work. My husband has a good job that still gives us health insurance that has covered astounding amounts of health care costs for our daughter. I am blessed. God has blessed us in overwhelming ways. And yet... I have the urge to pick up and go somewhere! Perhaps I will start planning a vacation! It would be so nice to pack up and go to the beach today - maybe I will just have to start planning for spring break!

Wednesday, January 9, 2013

An anniversary and a new appointment

     My husband and I just celebrated another anniversary. Thanks to a sweet friend who got us a gift certificate to a local restaurant we had never been to before, we had a great dinner out celebrating just the two of us. I can't remember the last time we were able to go out just the 2 of us and really enjoy it. I know we went out on a date after Peanut's first hospitalization but we were so worried about Peanut that we just hurried through it, unable to enjoy much of it. We had dinner at a great restaurant - my husband's new favorite! The whole evening was perfect. Peanut and Pumpkin spent the evening playing games with their aunt, uncle and cousins. We knew they were having a blast! Plus, we knew my sister could completely handle anything that came up with Peanut. At the restaurant we had the perfect table - off in the corner with very few people around us. So, we were able to talk freely. It was so nice to sit and chat about anything and everything! We really enjoyed the atmosphere and the food was fantastic. We finished the evening with the most delicious red velvet cheesecake! It was a perfect evening! We returned home just in time to play a couple games with the kids and then watch some TV while they munched on popcorn. It was such a perfect evening I hope I don't ever forget - or stop trying to re-create it!

Our spectacular dessert!

     Today was a new day. (As all days are...) It was back to "normal" life. We heard from the doctor and have a definite decision for the next step in treating Peanut's AVM. She is scheduled for a special kind of MRI later this month. (I was told that it is called a "stealth brain MRI" which sounds WAY cooler than it is!) Because she is allergic to the dye they use this means we will again be admitted to the hospital. She will have another steroid prep which means another round of crazy blood glucose levels. However, we've adjusted pretty well to this so we will handle it fine this time, I am sure. After they have a clear picture of the precise location and size of the remainder of the AVM, Peanut will have one radiation treatment. She will not lose her hair or have any of the side effects that typically go along with radiation treatments. However, they have let us know that it is quite likely that she will have some temporary deficiencies that develop about 2 months after that treatment. We are a bit worried about that. Once again, I know we just need to trust God. Yet again I find myself trying to just leave it all in God's hands. I know He will carry us through this. I know He is my strength. If I did not get my strength from God I know that I could not handle another long road. I am so thankful for a heavenly Father who loves me so much and is willing to carry every burden I have. Once we get past the temporary deficiencies we will still be playing the waiting game. It takes 2 years after the radiation for the AVM to be completely shriveled up. I'm sure Peanut will have many other scans to complete over those 2 years. For now, we will prepare for one appointment at a time and not worry about all the upcoming things. We are thrilled that we have a plan, that the doctor's have discussed her case at length to determine the best possible treatment and that we are moving forward. I am hoping that in 2 years we will be celebrating the end of this AVM journey with a trip to Disney! But SHHHHH! The kids don't know! ;)

Monday, January 7, 2013

A productive day

     Well, today I have been blessed with motivation, determination and more energy than I can remember having in a very long time! I had a day at home! This is very rare - I am usually up at the kids school volunteering in my daughter's class or working in the day care so I can be there to check Peanut's blood sugar and administer her insulin. However, today I had a friend who was able to fill in for me! YAY!! I decided to spend the day trying to get caught up around the house. But first, I got a good work out in. I have to get serious about losing weight and the first step is working out regularly. So, after my workout and shower, I sat down for a minute. About 30 minutes later I woke up!! I don't remember ever falling asleep in a chair in the middle of any morning! I was able to get some reading and laundry done. (I even did one load 2x just for extra credit - oh and because I forgot the soap the first time) ;) I put away the rest of the Christmas decorations, filled some of Peanut's prescriptions, got gas in the car, and returned a pair of pants my husband bought about 3 months ago and then decided he didn't like! After picking the kids up at school I did some more laundry, cleaned the garage - including getting 2 bikes up on their hooks and out of the way. Then, I helped my son with his homework and did our dinner routine - not too much work since my wonderful sister does all the cooking! After dinner I packed lunches for tomorrow then re-organized a cupboard that has been driving me crazy for quite a while! It's been a wonderful day and I feel very productive! If it's the workout that did this for me, I need to start doing that everyday!
     This evening, Peanut is complaining that her stomach is hurting again. We try not to worry about her but it seems like every time she develops a new symptom it's something major. She had the flu over the weekend but I thought she was over this. It just seems strange that she is sick one day, fine the next and then sick the day after that. I hope it's nothing serious and that whatever this is, it passes quickly. We decided that if she is still feeling this way tomorrow night, we will have to take her into the doctor. I often wonder when she gets sick how different it would be if it were someone else who was sick. Would we react the same way? Would we be as concerned or do we just over-react to every little thing with her? I know that by now I should have no problems trusting God with her health, especially. However, my husband and I have faced the possibility of losing her and it almost broke us. I don't feel prepared to face that possibility again. I'm not sure we could handle another hospital stay or diagnosis right now either. I know it seems like we are making a mountain out of a mole hill but it's hard to not do that with her. We have not been promised anything. We do not know how much time we will have with either of our children. I just pray it is a lifetime and continue to work on trusting God. I know He will continue to take care of us as he has all this time. It's just easy to get caught up in the what-ifs. Time to tell myself no - I will not think this way. Instead, I will choose to trust God. I will choose to enjoy the time we have today - right now. I will be happy to have time with my family. I will trust God to handle the future because I have enough on my plate already. I remember asking my sister-in-law one time how she handled raising her 5 children alone while her husband is deployed. Her answer was so true: "I take it one day at a time. And sometimes, one minute at a time." That is the attitude I must take when I begin to feel overwhelmed. I will not be knocked down by the what-ifs. I will live today. I will love, laugh, and cherish my family and friends. It's a good life I've been blessed with. It's an incredible journey I am on. What a great God we have who loves us more than we could fathom!