My heart has been full of emotion for the past few weeks as we are approaching our year anniversary since Matthew's heart transplant which was on May 19th, 2010. On one hand, I feel like celebrating because May 19th marks the first day of Matthew's new life. A life in which Matthew would not need oxygen to live, a little body that is beautifully pink instead of blue, and a boy filled with normal toddler energy. However, on the other hand, I feel extreme sorrow. I feel so much sadness for the incredible donor family who, one year ago, lost their precious little boy. I have never before felt such a conflict of emotion. I feel a little bit guilty that in order for our miracle to occur a tragedy needed to take place. I can honestly say that for a year, I have thought about that little boy and their family every day. My prayers are with the donor family, whoever they are, that they may find peace and strength this month and always!
As I reflect on the past year, I feel tired. It was an emotionally draining year filled with so many ups and just as many downs. Matthew has come a long way and we feel very blessed. Matthew just had his one year heart biopsy last Friday. Matt and I figure that this surgery marked Matthew's 20th surgery in his short three years of life. We received some great news! His heart has NO rejection and the interventional cardiologist, Dr. Cowley, described it as pristine with perfect pressures!! Never before in Matthew's life have the adjectives "pristine" or "perfect" been used to describe Matthew's heart. I was speechless and all I could do was cry tears of joy!! After a very long day, and several procedures and doctor's appointments later, one of Matthew's transplant cardiologists, Dr. Molina, told us that the reason they do heart transplants on children is to provide them with a better quality of life and that the time has come to start allowing Matthew to have a more normal life.
Our first outing was to take Matthew to church on Easter Sunday. Matthew's perception of church has been shaped by watching Josh and Luke come home each Sunday to show me their church treats or projects they collected while at church. You can imagine Matthew's excitement Easter morning when he knew he'd finally get to attend. When we arrived at sacrament meeting and sat in our places Matthew asked with a little disappointment in his voice "this is church?" About 40 minutes later he told us he wanted to go home! So much for our big, exciting church unveiling. Hopefully his love for attending will improve! We still have some obvious restrictions from the cardiologist for Matthew like no nursery or gym babysitting (ever), and he can't be around any kind of sick person. Our new found freedom is crazy!! We went out and got a family frozen yogurt treat and everybody got to go inside to pick their flavor. When I need something from the grocery store I get really excited when I remember I can go at any time and don't need to rely on a babysitter! Josh and Luke are LOVING having friends over again!
My goal now is to work on eating. He is doing a little bit better trying foods by mouth, but still receives about 85% of his nutrition through his PEG tube at night. He told me the other day that he was hungry and I about passed out! He tried two bites of what I had prepared for him to eat and then he was "full". Oh well, it's a start I suppose. I am working with a nutritionalist and a speech pathologist (who helps Matthew learn how to chew and swallow) on some of his feeding issues. I've been working with Matthew on how to hold a spoon or fork and feed himself. I've realized how much I took for granted with my other children. Skills that came naturally to them seem to be such an effort with Matthew. Matthew still takes 6 medications 3 times a day, however, we continue to wean him from meds at each visit. His cardiology visits and echocardiograms are monthly now. We have learned all too well through this experience that life can change so quickly! We have learned never to take for granted the happy, wonderful, carefree moments we share as a family!
I am so grateful for the blessings and miracles our family has received this past year! We have been overwhelmed with the realization that our Heavenly Father is aware of us and loves us very much. I hope you know how much we love each of you. Without your love, support, and prayers we never could have survived this year! Thank you very much!!