Recently, I attended the funeral services for a beautiful little girl, Madeline Alice Spohr, born just two weeks after the boys. She was 17 months old.
Just like our boys, she was extremely premature--a 29 weeker, and like our boys, she struggled with all she had to come home to her loving parents. Although her parents were told a number of times that her prematurity was too severe and she was close to death, she managed to come home long before the boys did.
She fought with everything she had, and she was winning! Thriving! Laughing...loving...enjoying life to its fullest! It was inspiring to see how she was doing. That is, she was thriving until she developed a cough one Saturday. Three days later, on April 7, she had passed away from pneumonia, a condition she was prone to due to her prematurity.
As you can imagine, the news of Maddie's death has hit us close to home, especially in light of the fact that our boys had a lot in common with Maddie. We were so close to losing our own children at various times--the time we were told that Jason had just had a grand mal seizure and had to be bagged (because he stopped breathing on his own) for 15 minutes until they could intubate him and everything that sweet Shawn endured during "the very dark days" last year are just a few examples of that. The pain and fear surrounding those moments are still very fresh in our minds. We tend to think we are safe now that we are so far away from the NICU and the "very dark days."
Maddie's passing reminds us that in reality we are not. Things can still happen. And for families like Maddie's, things still do. (now you can understand my neurotic diligence throughout RSV season)
While I try to keep the tone of the boys' blog light, it is important to recognize the fact that we are fortunate the boys are here to be the light of our lives today. There was a time in the not too distant past when babies born at the boys' gestational age would have most certainly died. Without advancements in neonatal research, made largely from the efforts/support of the March of Dimes, and the care of the wonderful nurses and doctors at CMH, the boys would not have lived. There really is no other way to look at it.
One day, when I am strong enough mentally, I plan on walking in the March of Dimes, March for Babies. It is the least I can do to give back to the organization greatly responsible for my sons' lives. Until then, please consider supporting Isaac's coworker, Kathy Jo, as she fund raises for our local March for Babies event. Her pledge site is here: March for Babies. She has pledged to walk for her premature nephew, as well as for Shawn and Jason. Please support Kathy Jo as she fund raises for this important event.
...to help find a cure for prematurity so another family won't have to face the pain of losing a child.
...for beautiful babies like our boys, Kathy Jo's nephew, Isaiah, and for Maddie.
Thank you, Kathy Jo. It really means more than you could ever know.
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2 comments:
I want to be the first to say that I feel extremely blessed to know the boys and I am truly proud of the boys that they have become and I cant imagine how things would be if they werent here I cant imagine not seeing their faces or not seeing the blogs all the time it really makes me think how far they have come it makes me feel honored that I can say they are apart of my family I feel proud at all their achievements I can remember all the hard times they went through and worrying about them every second praying that they would all just get better and come home I can also admit that I thought they were in the clear
stories like the one that just happened make me as well as you realize the reality of how lucky we all are I love them so much
I just feel we are all so lucky to know them and I couldnt wish for any better first cousins! I love you Shawn baby A and Jason baby B
god bless the family of that little
girl and when you are ready to do the march of dimes I hope you will call me because I would love to particapate in something so amazing
I love you and stay strong you have amazing children I just have no words I love them so much
It is an honor to walk for these little guys. They are my inspiration. Whenever I'm going through tough times and feel like the trials in my life are too hard I think of Shawn, Jason and Isaiah. My life has not been hard at all considering everything that they have gone through so far. It is amazing how much fight these little guys have in them. They are a huge blessing in everyone's lives. I feel this is just a little something that I can give back to them to show them how much I love them, how special they are to me and how much they have impacted my life for the better. They truly are amazing boys and I want to help other families have the chance that we have to have little ones in our lives like them. The day will come when all babies will be born healthy and I, for one, am looking forward to that day! Until then, I will continue doing all that I can to help these little, amazing miracles! :o)
Thank you Stacie and Isaac. You two are also an inspireation to me. You are amazing, strong parents and like I said earlier, I am honored to walk for your little miracles. :o)
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