Where do I even begin? Holy crap. That's where I guess.
To say that this has been a trying year is an understatement. It has been the hardest year to date. Its funny when I look back on things that I went through and at the time I thought I was literally going to die (insert dramatic hand across the forehead pose) and now I just laugh at those situations. Those times ain't got nothing on this past year. Yes that's right, ain't got nothing.
Let me just bring everyone up to speed. Readers Digest style.
November of last year Leonora was born with a condition called PHP (Pan Hypopituitarism). Her pituitary gland is under developed and she will forever be on hormone replacements. Her body has no idea how to handle anything without her medicines and doesn't know how to fight off infections without our say so by increasing medicines. She has done very well with all of her levels for the most part this year.
Fast forward to about 3 weeks ago. After my uncle passed, away we got the news that my little nephew (7 months old) has SMA (spinal muscular atrophy). A genetic condition that affects the neurons in your spinal cord. He is currently in a clinical trial which he started this past Wednesday. He is such an amazing little boy.
Its all too soon... if it ever "NEEDED" to happen. I know that my timing is not perfect but I do feel like it all too soon for my family.
I know there is a reason for everything and that we were given these super special children (not that all children aren't special) for a reason. I believe that they were given to use because God knew we would take care of them exactly how they needed to be taken care of..... Doesn't make any of this suck less or any less unfair. Its unfair. Its unfair for those little babies. Its unfair for them to have to go through any of it. The poking, the prodding. Its not fair to have to watch it and its not fair not to be able to do anything about it.
I heard a song tonight thanks to a good friend of mine. I wasn't ready for it. I'm not sure when I will be ready for it. I know one day I will be. Its a great song. Its called Broken Hallelujah by The Afters. I guess the song was written after one of the guys' baby was in the NICU. I'm not sure of the exact story.
I'm not really sure the point of this post except to ask for prayer. Pray for our Asher boy. Pray for my Na-nie doodlebug. Pray for a cure for this SMA crap. Pray for our other babes as they go through the motions and don't (and won't) really know any other life. Pray for my family. As a whole. For strength. For some kind of tiny understanding or something. For hope. Just pray.
