The Monday before Siena was born, we toured the NICU at St. Mary's Children Hospital at the Mayo Clinic. As a part of that tour, we took a shuttle from one part of campus to another part of campus. That shuttle stopped at the Ronald McDonald House and I had the opportunity to see several families with toddler aged children facing very obvious, major medical issues. I can't even begin to tell you how my heart was drawn to these families that day.
I've always had a heart for children with special medical needs or other struggles, but more in a "love them to pieces" kind of way. Teach them the best I could. Support their parents the best I could. Pray for them when there was nothing else to do. But from a distance. The mothering needed was a different kind of mothering, one I could not understand. Not in a repulsed or pitying or bad way... I just couldn't ever imagine wanting that life for myself or for my children.
But that day I knew that in less than 48 hours, I would know if I was embarking on my own journey with a child with medical special needs. We still didn't know the exact problems, but I was just sure that it would be only her kidneys.....well, maybe her bladder too. They would stabilize her and we would go on to look for the best medical solution we could come up with. Maybe a transplant and then she would go on to live a somewhat typical life. But I knew that if she made it we would be off. Off to prove to the medical establishment just how much they don't know. Teach them not to underestimate any child, regardless of pre-existing prognosis.
And I wanted that.
Like I've never wanted anything in my entire life.
I've seen for years the joy that special needs children bring to their families. I could see it on the faces of those moms and dads and toddlers too. I could feel it... even through their worn, down, tired, anxious expressions. I could see it in the way the shuttle driver interacted with the *regulars*. This was not a life to be feared I told myself. A hard cross to carry, definitely...but not to fear. I would learn how to be this different kind of mother. I didn't need to worry, we would all be ok. Sure a surprise perfectly healthy baby would have been great, I'd even prayed for it, but I knew that it wasn't remotely reasonable to expect that. I just had so much faith, that surely God had an amazing ending planned for this little girl that brought so many people together. That He wanted this to end with a glorious testimony on the dignity of human life. How could He not spare her?
Human beings are so arrogant, aren't we?
I think the doctors knew right away that her issues were much, much more severe than expected. They didn't say so to me, but Tim said from the beginning they were simultaneously trying to deal with the most pressing issues and also diagnose what they could of other things. As it turned out, we didn't end up with much more than a laundry list but even with only external evaluation (plus 1 X-ray) she had a significant list of problems to overcome. When they had her initially stabilized, one of the providers ran down the list partially with Tim and reassured him that none of them on their own was un-overcomable but clearly admitted it was more than a lot for one baby.
How much greater the miracle would have been I tell myself! How much greater the story! The ending! What would it have taken for us to have our miracle?
The truth is that every death and heavenly resurrection is a miracle of its own. Every. Single. One. God can take us messed up humans and turn us into saints? That's a pretty big miracle when you think about it.
God didn't not provide a miracle.
God didn't not spare Siena.
Perhaps God didn't give me the glorious testimony I wanted to share.... the one that was happy and easy and fun to read, with cute pictures of a growing baby to go along with it. But He did give Siena a glorious testimony all the same.
Siena's story has the most amazing of all endings.
Much better in fact, than what I had planned for her.
What was best for Siena is so difficult to accept because it is not what was best for me.
I can see that and know that and feel that and hear that and believe it... but it is so hard right now to embrace all of that. No matter how hard my life would have been at this point in Siena's life, had she survived, I still wish for it. No matter how hard her life would have been, I still want it back. I don't even know what it would have been, but I feel like I have been robbed of it.
I think God maybe knew Siena would need all those issues just to get through my stubborn, thick skull how much more He needed her than I did. I can't say that I've fully accepted that truth, but I can honestly tell you I'm working on it.
A little bit.
The love that grew in my heart for this child, long before she was born, is just as real today as it was then. It may even be stronger. My heart is bursting with love for her that feels like it has no where to go. That if I don't use this love that I will lose it and it will be taken away from me...and that would be an even greater loss. My eyes are burning with tears still yet unshed, that I know will someday fall. Siena still has a story to tell, and every fiber of my being is longing to tell it...even though I often can't find the words right now.
I will love her, and I will cry, and I will tell her story.
Because what kind of mother would I be if I didn't?