Madelyn was in the hospital last week. That sounds scary, but she was there (at least in theory) so that we could learn how to help her gain weight. Unfortunately, that means a feeding tube. As in, everything she gets is going down a feeding tube. We kind of hate it, in part because we lose one more "normal" aspect of life for our child (being fed orally), and also because having an ng tube shoved up through your nostril, down your esophogus and into your stomach seems rather icky and uncomfortable. But, at the same time, this is not only our best option, it's our only option.
I know people are still wondering why Madelyn is struggling so much. We don't know. We have clues, and teams of doctors are looking into all sorts of possibilities. We have suspicions, and strong signs. Once we know for sure what we are dealing with, we plan on being absolutely upfront and unapologetic about Madelyn's difficulties and needs. We are not ashamed of our daughter in the least. She is wonderful, and smart, and as sweet as can be. When I was pregnant with Madelyn, I thought of her as my "sunshine baby." That sounds silly, I realize, but it describes Madelyn perfectly. She is an absolute ray of light, and Jason and I are in awe that we get to take care of this incredibly special child. We wouldn't change a thing about her.
I also know that there are those who are wondering if Madelyn will catch up or will eventually be like most other children. She will not. Her condition is permanent, and we aren't waiting for her miraculous recovery. This means that, for us, life will always be a little different. But it will be wonderful and happy, even if it includes an abnormally high number of medical bills and more work to accomplish normal things. We have learned though, that miracles don't always include the sudden healing of a child with special needs. The child is the miracle. The ability to still laugh, and enjoy the "new normal," and find the occasional silver lining (my baby still likes to cuddle, and our apartment doesn't need to be baby-proofed yet) are miracles. And the ability to accept whatever comes with faith, peace, and determination is the miracle that happens in our lives everyday.
Yes, sometimes we honestly feel a little picked on, or rather, we feel that Madelyn is pretty picked on. But these things I know: disabilities are a part of our earthly experience. Yeah, God could prevent them. He could prevent the suffering and the pain. But He won't. Not because He doesn't care. I know He cares an infinite amount, and that our child will always be protected and watched over. I know the Savior loves little Madelyn deeply. We feel that love from the other side of the veil constantly. But regardless of that love, we still have to suffer in order to learn and to grow. Suffering is an absolutely necessary part of the refiner's fire. And if there is one thing we are learning throughout this first year of our new life, it is that we are willing go through anything to be able to be with Madelyn, and each other, and all future children after this life. And the Lord is guiding us ever carefully by the hand, step by step.
So I think what I am trying to say is this: Madelyn has had a difficult life thus far, but one day, it'll be okay. Madelyn will eventually be blessed with a perfect body to go with her breathtakingly beautiful spirit. But for now, she's that beautiful golden chrysanthemum that is growing in a dented, old, rusty bucket (even though Madelyn is undeniably cute). But as the gardener said: “I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn’t mind starting in this old pail. It’s just for a little while, until I can put it out in the garden.” This is, of course, pulled from President Monson's talk "Charity Never Faileth."
Until that blessed day when all will be made perfect, we are going to enjoy Madelyn's skinny little legs, her sweet smile, the giggle fits, and all the funny little things that make Madelyn, Madelyn. We love her just the way she is.