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
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
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
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
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
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.