I am so blessed to have 9 amazing children… Each and every one of our kids is so different and blesses our family daily in different ways. Each child adds a different set of challenges to life but I could not imagine one single day without any of my children.
With Declan’s diagnosis of arthrogryposis, I often find myself searching the web for information on what the future might hold for our son. I do know that we are not having a “healthy” baby, his diagnosis may be fatal and if he lives he may never walk. But these things do not change the fact that our son is a blessing. As I search through website, I find many people who have “terminated for medical reasons” and hope to get pregnant again with a “healthy” baby. I honestly have had a hard time finding anyone whose child has been given the diagnosis of arthrogryposis and micrognathia within the first 24 weeks of gestation that has not terminated the pregnancy.
My heart breaks… I look at our family and think of Caleb. He is over two and just started taking his first steps and is developmentally the age of an 11-13 month old. His life has consisted of MANY surgeries, hospital stays and hundreds of doctor’s appointments. Although these challenges have been difficult on Him and at times the rest of the family, he blesses our family no less then the other “healthier” children. He is a gift from God and his life has been an encouragement to so many.
As I read these blog posts or comments from these many women, I find them trying to justify their decision by talking about what kind of “life” they saved the baby from. They also talk about the difficulties that come along with a pregnancy when you know the prognosis is not good. I am not saying these things are easy… I buy baby bedding knowing that it may never be used and when it comes in the mail I am so excited but also reminded of what could be. Most women cannot wait for another ultrasound while I am so scared of what they might find. When people excitedly ask me when I am due, it is just another reminder of the day that I am fear… the day that God might send our son to heaven, the day he is no longer protected inside my belly. It breaks my heart to hear my 6 year old pray daily that mommy’s baby will not die. But, I know no matter what the Lord has planned, everyday we have with our son is a blessing from the Lord. The days might not be easy but I cannot say that any of our children have made our lives easier and we would never consider “getting rid of them” because of the challenges that come with raising children.
I spent the first trimester of my pregnancy in the hospital with Caleb. Caleb and I were there for 5 weeks and during our time there we made many friends. I met a little boy who doctors say will not live past the age of 5, several children who did not speak and had difficulty walking, older children that were will chair bond and daily my life was blessed by the smiles and spirits of these amazing children. To know them, read to them, play with them and love them blessed me daily. What a joy it was to have them in my life, even if it was only for a short time.
The alternative to caring for a child with disabilities is that our son might go to heaven sooner then we hoped. We know that the Lord gives and takes away. I cannot even being to fathom what it would be like to loose a child. I am so thankful for each and every day the Lord allows me to carry my child. I pray that I might get hours or even days to hold my son. I pray that he will get to meet his brothers and sisters and I trust that the Lord has numbered his days…
Today, Bryan and I were able to see Declan. I am not sure what the future holds and I feel unprepared for whatever happens but I am so thankful for our son. He has already changed our lives forever.