I decided that I need a place where I can write about our experiences preparing for the birth of our son Mason, as well as his journey with Spina Bifida once he’s born. I actually started the blog days after we learned of his diagnosis with Spina Bifida Myelomeningocele, Bilateral Clubfeet, and the accompanying Chiari Malformation (brain malformation due to the pull of a misplaced spinal cord), with the likely development of hydrocephalis. I process things by writing and blogging seems to be a natural outlet for that. I just wasn’t sure if I was going to share that blog publicly or keep it private.
I’ve decided to share Mason’s Spina Bifida Journal for several reasons. First, one of the most helpful things to me online so far have been the blogs of real-live families travelling this Spina Bifida journey. I’ve been able to peek into their lives from before birth (sometimes) through the hospital stay and surgeries and on through childhood. Some have been gracious enough to answer my emails, as well.
Second, I’ve been humbled and heartbroken to hear the comments of others who think that this diagnosis is a sad thing that “just happened”. Every doctor we’ve talked to has offered their condolences on the situation, said they’re sorry we have to have a child with spina bifida. Quite frankly, it’s getting on my nerves.
Was I shocked when we first learned of Mason’s S.B.? Yes. Do I have sad moments when I think about some of the details, like the fact that he’ll have to spend the first part of his life having surgeries and living in the NICU, instead of snuggled safely in my arms at home? Yes. But my husband and I are not only thrilled to be having a baby, we’re thrilled to be having this baby, spina bifida and all. We know God’s truth:
“In the premortal realm, spirit sons and daughters knew and worshipped God as their Eternal Father and accepted His plan by which His children could obtain a physical body and gain earthly experience to progress toward perfection and ultimately realize their divine destiny as heirs of eternal life.”
These truths are foundational. We accepted God’s plan to come to earth because we need two essential things in our quest to become like Him. We need a body and we need to gain experience with that body. There is much of the world who will look at the diagnosis of Spina Bifida and decide that “something went wrong” as my son’s body was growing in the womb. We know that the circumstances of my son’s body are not an accident, they are part of God’s plan. Some of the experiences his spirit will need to become more like our Father in Heaven will come because of his body, and the rest of my family will learn from it as well. Russell M. Nelson gives us a wonderful perspective:
“The gift of a physical body is priceless. Without it, we cannot attain a fullness of joy. A perfect body is not required to achieve a divine destiny.”
I am grateful for the gospel and the ways it influences what I teach my children. What a blessing it is to know that our bodies are essential to God’s plan of happiness and that God makes no mistakes when he is knitting together those bodies in the womb.
That brings me to the third reason I’m sharing the blog publicly. The statistics are staggering - Over 50% of women who’s babies are diagnosed with Spina Bifida choose to kill their baby in utero. They choose abortion in the fear of raise a child who will have lifelong medical issues. I know that if even one mother reads our journey of living joyfully with a child who has spina bifida and realizes she can do that to, it will be worth it. Spina Bifida is not a tragedy, it is not the end of the world. Children are a gift from God that we are given to care for and treasure. They bring joy to our lives.
Like I do here, I blog there what is in my heart. It’s not always neat and tidy, it’s not always sunshine and roses. I’ll share the emotions, the questions, and the hard parts right alongside the joy. Right now posts are few, though they will increase as Mason arrives and we begin daily life with him. If you want to follow our journey you can follow Mason’s Spina Bifida Journal with Google Friend Connect or even through email, the links are in the sidebar of that blog. If someone you know learns they are having a child with spina bifida will you please share my blog with them, or even give them my email address? While you’re at it, share hope. Don’t tell them you’re sorry they have to go through this. Spina Bifida is not a tragedy, it’s just another path God puts under our feet. He’ll walk it with us, and it will bring us to joy.