Tuesday, March 25, 2008

Perceptions

I have a favorite saying that I use all the time. It goes like this:





I felt sad,
For I had no shoes.
Until I saw a man,
Who had no feet.




Whenever I get down about the long adoption process and all the pain and anger it has caused, I think of this saying. Just recently it was driven home to me in a very personal way.

Let me introduce you to Dustin, a teeny tiny little peanut who is a miracle of huge proportions. You see, just weeks into my friend's pregnancy she began to experience serious issues. Many months of bedrest, medications, doctor's appointments and a boss who kept threateneing to fire her for having to be off work for so long. She fought a valiant battle against the odds and was able to deliver him at a point where he could survive. He spent lots of time in the NICU struggling to survive and grow and fight off the terrible complications preemies face. But he fought and he made it!!! A true miracle in the flesh.

Then things changed. Abnormalities in his bloodwork kept popping up. He wasn't growing well. Something was wrong. They received the devastating news that he has an incurable genetic disorder that is extremely rare. Only 1 in 1 million chances of having it. It's so rare that a prognosis is impossible to make. There is one new medicine in clinical trials that offers some hope. Otherwise, there is no known treatment. The good news is that they discovered it incredibly early. Most kids are not diagnosed until they have end-stage kidney failure. Because he was preemie and watched so closely, they have discovered it much earlier than normal. There are dietary limits than can help, supplements that could help, and the hope of the new drug making it to the market in time.



My pain is nothing compared to the pain his family is dealing with. It puts it all in perspective doesn't it? So please, if you have a moment, say a prayer for this little guy and his family. They could really use it now.

9 comments:

Susan said...

I sure will. What a beautiful baby. My heart goes out to his family.

angieshaffer said...

What an adoreable baby!

Tam said...

He's so beautiful. Praying for him and his family...

Anonymous said...

He is just so sweet.. he has the most darling ears too! Definatly putting this little guy on my prayer list!

HappyK

Anonymous said...

More prayers coming from Ohio.

Laura

dana said...

My heart goes out to those dear parents. Let them know that I will pray. Our God is an awesome God...

dana said...

I am assuming that this disorder could be life threatening or limiting... We all have incurable genetic "disorders", but most of us can live with them... Not to make light of a potentially rough situation.

ManyBlessings said...

What a gorgeous little guy. Please let them know my heart and prayers are with them.
d

Angel said...

Precious little one. That is so sad. I am saying a prayer for them. Angel