I know life isn't fair. And I know how lucky and truly blessed I am to be Peanut's mom. And quite honestly, I am normally totally okay with who she is and how she is. She's awesome, really!
But some days I just think how unfair life can be. She was born at 36 weeks, with no known trauma. She was the product of a non-smoking, non-druggie mom. I did everything right, and everything seemed fine.
It's obviously not, and no one can tell me why. She doesn't really have cerebral palsy, but the doctors have given up and called it that in order to give it a name. No one can tell me "what she has". We know she has a metabolic disorder and microcephaly and encephalopathy. That doesn't explain what happened however. It is so frustrating!
A good friend of mine came over today with her kids. She has a 2.5 year old who was a micro-preemie. She was born at 24 weeks and weighed 1lb 9oz. She was tiny and not expected to survive. She is blind and delayed, and has cerebral palsy. She is tube-fed, but started eating a month or so ago. She now takes yogurt and baby food by mouth. She also started walking this week. This is AWESOME and AMAZING, and I am so proud of her.
At the same time, I am so insanely sad. My peanut is 5 years old, not 2.5. She is nowhere near walking by herself. She cannot stand up on her own, much less take unassisted steps.
I am so sad tonite. I just want to grab my Peanut and snuggle under the covers and cry my eyes out. And I know that tomorrow all will be fine, and she will smile at me and life will be okay. It just breaks my heart to see the things she is not doing sometimes.
How can a baby born with so many obstacles overcome them, and my Peanut with no obvious obstacles can't climb over them? It's simply not fair.
(Sorry for the ranting and pouting and crying. I promise I'll be back to normal next post!)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
4 comments:
(((Hugs))) You have every right to vent your frustration from time to time. I'm amazed at the things your Peanut has accomplished recently & I know in my heart that she will continue at her own pace to amaze us all.
No need to apologize for the rant. Seriously, I know exactly how you feel. My son is 3.5 and is much like your daughter. Due to CP, he can't crawl, stand, walk, talk, eat or drink. There's days it just sucks (putting it lightly) and you need to say it. My heart goes to you. Big hugs to you and Peanut!
I'm so sorry that you are having one of those days!!! I've been there and I know how much they suck! I am also o.k. with Gavin's and my situation most days, but there are some days that I just can't be positive about it! I wish that I had something to say that could help. Just know that I'm thinking of you and saying a prayer for you right now and that you are not alone! Hang in there!
Just giving you ((((((((((hugs))))))))))). I know this has been rough on you and you've experienced so much stress and pain with the trials both kids have had to fight. I think your children are beautiful and have worked so hard to overcome their burdens. You've had to deal with so much and shouldn't apologize for needing to vent. We've all vented for MUCH less!
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