It may not make sense to everyone, but Jut and I fully believe this little life, and the way it came about, is all God’s will. We spent two years praying that we would be open to whatever God wanted for our family. Getting pregnant was something that took a leap of faith, a lot of prayer, and time thinking about a third child with Sanfilippo. It is a total trust thing between us and God….not that this child wouldn’t have Sanfilippo, but that He would carry us and prepare a way for us to raise three kids. I always say the grass in not always greener on the other side, it is greener where you water it. I don’t think normal is the answer to happiness. I even think my kids are my normal, so a third doesn’t seem sad…it seems exactly right. Non-sanfilippo comes with so many challenges I have never experienced….and it would be a constant reminder of what jayden and Brooklyn can’t do. She could also talk back, be a brat, pee in the potty, and even not like me at times. I don’t think non-sanfilippo will be a “relief”, or better….or “thank GOD! She’s not like your other two…..” which I am sure ignorant people will say to us.
Every time someone implies that if she doesn’t have Sanfilippo it’s a better deal, it offends me. To me, that is saying Jayden and Brooklyn are somehow less than a normal child. Make sense? Don’t get me wrong….I know all the “benefits” of not having to bury all your children. It doesn’t a psych degree to figure out the joy of parenting a child without special needs. But in a large way-I guess I am trying to say it will be different, not better. And I am glad I think that way. I am glad that I choose to see the beauty instead of the pain. I feel like I would drown if that was all I was choosing to look at. I LOVE seeing Jayden laugh….at the same moment I type that, he has changed my computer resolution and I have pulled paper out of his mouth so my 5 year old doesn’t eat paper. This is the reality. But within it, there is both beauty and pain.
And in the same moment, Sanfilippo will be the first thing I think about when II see her. How will I react to seeing her for the first time? How will we grieve/celebrate regardless of the diagnosis? How will I do waiting a week after she is born to get the test results….as everyone, including me, guesses whether or not…..I don’t know. But I trust God will meet me in those days as well. I am reminded about God saying…33 Seek the Kingdom of God[a] above all else, and live righteously, and he will give you everything you need. 34 “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. (Matthew 6:33-34 New Living Translation (NLT))
As far as number 3, I have no worldly dreams for her. I don’t even take for granted the weeks ahead that she is still in the womb. Plenty of people close to me have lost a child before they took their first breath. And when I start to dream about what it would look like to teach her how to drive, hear her say “I love you”, buy big girl undies, have her go to a friends to play, read me a story, watch her get baptized, play a sport, go on a date, get engaged, or have a baby…..I stop. These things in and of themselves shouldn’t matter. Loving the Lord and living within His will is the only thing I dream for her. She doesn’t belong to my dreams anyway. I have no dreams, so I have nothing to grieve. It may sound sad to some, but I find it is so freeing. No expectations-no disappointment. There is only up from there and she can be whoever God made her to be. I just continue to pray when I start to think about losing her to Sanfilippo---or anything else for that matter, that God would just carry me and prepare me to remain in his arms.
Blind trust with no strings attached is faith. But this is a daily, moment by moment, alignment. It is not a “one and done” decision. Sure, I still get sad when I watch videos of Jayden at Brooklyn’s age, then think about all he has lost…and watch her…with all she is going to loose. But-it is in these moments, I can choose to focus on the pain of the loss….or acknowledge it sucks-then appreciate all the good within it. Brooklyn is thriving in the moment singing and coloring, and learning about the world, Jayden is still present and loves to wrestle and laugh. Just because the pain is real, doesn’t give it reason to consume me.
So, baby girl….remind me every day I get to be with you of its blessing…in my tummy or out. God is in charge of your days, and not me. Let me hold loosely so I can just love you.
