Come Health or High Water!!

Today we had to take our first stance has Stasik's new parents. Although it is not official yet, we already see ourselves as his providers and responsible for his security. We are not sure how all of this is going to work out and we hope that we do not offend anyone that his currently charged to his care. In three days we have seen many areas of concern for him. He is regurgitating a lot of food and of the food we have seen, none of it has a lot of nutritional value. For a typically developing kid this food is barely sufficient. For a child with Down's Syndrome, it provides few of the needed nutrients for better physical and mental development. As parents that already have a child with Down's Syndrome, we know, and we have done the research. As we say in Texas, "this is not our first Rodeo!" Stasik suffers from very poor muscle tone, normal for DS children, but extreme for an 18 month old child. Surely, some of this is a result of recent surgeries, but mostly it is lack of the proper nutrition. Today we had to change his diaper and it was the first time we have pulled away his three layers of clothing. Our tears could not be held back. We knew he was very, very small, but the extent had been covered for days. His legs had loose skin and if I put my hand around his upper thigh, my index finger and thumb would touch easily. His arms were much smaller and his stomach was distended. Obviously, all of these are a result of many things, but someone has to understand that even though the law requires us to wait for the adoption to be complete, we are not going to sit idly by and watch it happen. So we made our feelings known about a few concerns today and we are praying that the powers that be may let us add to some of his diet. We will buy food for his whole group if we have too.
The good news out of all of this is that we are just in time for him. He has such an upside that it is impossible to think that he will not rise from the proverbial ashes like the mythical phoenix. Someone once said about this journey that we need to keep perspective, "What you see in your child now, is the worst it will ever be". These children are resilient when given the opportunity to thrive. With everything that I have written over the last four days, it is amazing to see the things that he can do. It is as if he already carries the Wingfield name. He is stubborn to a fault and will continue to push himself until he gets what he wants. For such a little guy he is very strong. He has a certain will that reminds us of our other son, Carter. I believe that Carter will be his mentor and biggest supporter. It is peculiar, the similarities I see with both of them. There is no quit; only the desire to prove that they can do what they want. Once we take him from his current circumstance, he will never look back, but if only for an instance.

“Suffering and joy teach us, if we allow them, how to make the leap of empathy, which transports us into the soul and heart of another person. In those transparent moments we know other people’s joys and sorrows, and we care about their concerns as if they were our own.”
~Fritz Williams

In four days we have seen Stasik transform into a totally different child. His pale color and sickly demeanor on day one has changed into a vibrant face and a bellowing laugh that finally arrived today. He laughed uncontrollably and he smiles more and more each time we see him. When we arrive he reaches for us and is sad to see us go. We are trying to establish a strong emotional base to let him know that we love him and that we are here for him. The process is still ongoing, but a huge part of me truly believes he would not have subsisted much longer, emotionally or physically, in his previous state. Knowing he is loved is the first part, now it is time to handle the other health concerns. We have everything and everyone in place at home, but we will just have to do what we can while we are here. We hope he knows that whether we are with him or away from him we are committed to him as any good parent would be. We will always be back for him, he is part of our life now, and always will be.