Our marriage has been amazing! There have been good and bad times but there is nobody that I would rather share my life with other than Josh. We were married 6 months when I found out I was pregnant with our first child! We were so excited!
When our first child, a son, Carter, was born, our life was forever changed! We saw what a true gift from God was. It was a beautiful, red headed, 5 lb baby boy. But this also began a journey that I never would have dreamt of.
Carter was born with two holes in his heart, a hypoplastic thumb and a missing right kidney. But he was PERFECT! He had the most infectious smile, energetic, loved Elmo and Thomas the Train. He was a typical boy that loved to fish and ride his bicycle. At 13 months old, however, our life was turned upside down. Our baby boy was sick...he was diagnosed with Fanconi anemia.
Fanconi anemia(FA) is a rare, genetic recessive disease that carries a lifetime of problems. This causes multiple birth defects, failure to thrive, bone marrow failure, cancer, hormone deficiencies, vision and hearing loss, and the list can go on and on.
To make a long story short, Carter's immediate risk was of bone marrow failure. We met with an FA specialist and he told us that the best chance for Carter surviving a bone marrow transplant, was for us to conceive a perfectly matched sibling. How do we go about doing this, we asked our doctor? Well, we basically had to "make" a perfectly HLA matched sibling to Carter but the sibling could not have FA. Since FA is genetic, there is a 1 in 4 chance we could conceive another child with this disease. At this point, we started IVF and PGD. IVF (in vitro fertilization) and PGD (preimplantation genetic diagnosis) is a combination of retrieving and fertilizing eggs and testing to see if the embryos are a perfect match to Carter and if they are free of FA. We had a total of 5 matches between two cycles of this but none of them took.
After Carter's 3rd birthday, his health declined rapidly. We had run out of time. A bone marrow transplant with a matched sibling donor would have given Carter a 95% survival rater but with a unrelated donor, his chances were only 70%. Our transplant doctor called us and said we had to proceed with transplant. In January of 2010, we moved our family to Minneapolis, MN and began this journey. We left our home, our family, our friends, our community. We were scared. The doctor came in and told us to be prepared because there is a chance we may not come home with Carter alive. Six months went by and Carter did well through out transplant.
When Josh and I left that cold, January day for Minnesota, we were two very different people than when we returned. We had witnessed our one and only son literally fight for his life. Many people asked us how we handled it with us being so young? Well, we didn't but God did! God is the reason Carter is with us today! God did this!
During my IVF/PGD cycles I had some complications and was told I would not be able to become pregnant again on my own. This was hard for us because we always wanted a house full of children! But the doctors were wrong...I gave birth to our second son, Ethan, almost exactly one year after Carter's transplant! Ethan is our second miracle and he has completed our family!
Over the past 3 years since Carter's transplant, there have been a lot of ups and downs. Carter has had to endure multiple surgeries, hospital stays, illnesses and missed just being a kid. We are at a point now that while the transplant is over, Carter is NOT cured. There is NO CURE for FA! He has to be screened for cancer several times per year, he has to have supplemental nutrition through a feeding tube, he is on a handful of medications and growth hormone shots daily. He has some hearing and vision loss. His little body has to endure a lot but this disease is cruel. It is not a matter of IF Carter will get cancer, it is WHEN he gets it. We know that he will get cancer. We know that most children with FA don't live much past their early adult hood but we are not the one who knows when Carter will lose his fight with this disease. Instead, we just try to live life as much as we can with caution and make every day with our precious children count! We have to trust that God will give us more time with our children, as we know that none of us are promised tomorrow!
I encourage each of you to not take one day with your loved ones for granted. We have had a lot of scary situations with Carter and have almost lost him several times but there is one thing I can tell you, I will never give up fighting for him and with him! I will always fight the good fight for both of my children and Josh! They are everything to me!
As a wise older woman once told me "speak to your mountain. claim your mountain. God can move that mountain'. I am sure many of you are faced with different circumstances in your life but always remember that things could be so much worse. Every day I have to watch a disease slowly take my son from me and I know that one day, cancer will take over his body. This is something I can never change. But I could also be mourning the loss already of my son. I could not have my children. So for every day that I am given to wake up, kiss my children's cheeks and give them a hug, is always a great day! For every night that Josh wakes me because he wrote a new song, I am thankful! Because its moments like this, we can never get back when they are gone.
Live, laugh and love and always have FAITH!
"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
What has God done for you? What miracles are in your life?
Until another time,
Crystal aka Josh's wife
No comments:
Post a Comment