Tuesday, March 22, 2011

A Heavy Heart

I came across a blog about a family who found out that their daughter, at 4 months old, had a rare form of SMA (spinal muscular atrophy). I won't go into the details about the disease, but I will say its a neuromuscular disease that significantly decreases a child's quality of life, and life expectancy. I read post by post about taking her to the doctor because something wasn't right, and it slowly progressing to staying overnight in the hospital, to getting tests done.

Eventually the child's condition got so bad she had surgery to remove skin in her throat because she was struggling to breath, and once that didn't make things better she was put on breathing tubes, and had a feeding tube placed in her stomach. My heart ripped with every single picture I saw of this poor baby hooked up to monitors and IV's. All she wanted to do was suck on her finger but she couldn't because of the tubes. She couldn't even cry because her vocal chord's became paralyzed.

About a month later the family was given the option of giving their little girl a tracheotomy and letting her go home, with the promise that she will slowly deteriorate, and become completely paralyzed, if she even lived a few more months, or take her off the breathing tubes, and letting her pass peacefully. The mom looked into her baby's eyes, and saw that she was worn down, uncomfortable, and tired, and knew that she couldn't put her through that pain anymore. So the last day, they gave her a bath, which she loved, and held her all day before the breathing tube was taken out, and they had to sit there while their little angle slowly slipped from their arms way too early.

I was broken for this woman and her husband. No parent should have to make the decision when to end their child's life. I couldn't help but imagine if this was our situation. If a doctor told me that I had to decide whether to end my daughter's misery, or keep her around for an uncertain amount of time in pain.

I feel like I am always saying, this will never happen to me, but I am sure that family said the same exact thing to themselves, and look what happened.

You never know how strong, how all-consuming, this love is until you have your own child. I would do absolutely anything for her. I never want to see her endure pain. I never want her to be made fun of, to have her heart broken, to go to the ER, to have a surgery, to have tubes stuck down her throat because she can't breath.

I sit here with puffy and swollen eyes reading this sweet baby's story, and imagining if it was Kynlee. It hurts. I am in physical pain at the thought of her enduring something like this.

I guess what I'm taking away from this is that life is so precious. I hold my girl a little tighter now. I watch her a little more closely, and I sure as hell soak up every second I have with her. I realize that complaining about being tired because of lack of sleep is completely selfish when a family like this would give anything to be in my shoes, if it meant having their angel back.

I hope Kynlee wakes up and wants to sleep in bed with me tonight. I'm feeling like I want to be extra close to her right now.

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