Monday, October 10, 2011


  Something that is brought to your attention more frequently when you have a child with special needs is the fragility of life.  You know that with your other kids, but for some reason it is easily pushed out of your mind and you live your life.  When you have this child and they don't come out pink and healthy and they are taken away after moments, you realize it.  Even if your child is for the most part healthy your stuck in the NICU, and you see little babies monitors beeping with feeding tubes and a lot more machines around them then your child has.  Your heart aches for their mothers because you can put yourself in her shoes and feel that pain, that tearing of your soul. You will hop on facebook and check what the other special needs Moms are talking about today.  You will be happily going about your day and click someones little baby is sick, or has another medical problem.  Sometimes theirs a picture of the cutest child, and an obituary under it letting you know they have passed on. You will cry for those Moms, and you have never met them or their baby.  You know how special that child was to their family, and wonder how they will go on now their child has passed. Their will always be someone missing for her.  Will that Mom get in the car and go to make sure everyone is in, and think she's missing someone? Then she'll realize wait, their no longer here. Will she feel that loss all over again?   You will get on the internet and up pops a story of a Mom who was going to sell her 2 week old so she can go on a trip.  It makes you so mad because you know a Mom who has been absolutely devoted to their child. They've had endless hours of worry and many sleepless nights over their perfect, but sick, special needs baby.  Then that lady had the nerve to just sell her's like its was a used car.  When the Mom you know would sell the clothes off her back, or never vacation again, for anything to help her child be well again.  You know this when you walk in for a heart check sure everything is fine, and they slap you with open heart surgery.  Hey it's no big deal (why are you crying) lady because it happens everyday, but do they know it's your child? They want to cut open Her chest, pull out HER heart, and stop it, fix it and then start it again.  Don't you know she's my heart too? I will be the one sitting with her all night waiting months for her to be normal again, and you will go home at five and forget all about it. I see these things everyday, and I choose to hold Leighty more. I skip doing the house work that needs to be done.  I wish I could say I'm more patient, and kinder.  That still slips away at times, but I reel my anger in faster.  I'm not always perfect but I try to be more careful of my words, and be less offensive to others who are different then me.  I'm not essentially different. By that I mean I don't go talk to every Ds person I meet, because I'm still shy.  My outlook is different. When I see someone missing 2 legs, but their up walking on artificial legs. I don't feel pity for them. I feel admiration.  I think how fulfilling their life still is, how strong they are, and how lucky their families feel.  It may come as a shock that this child isn't what you expected, but this is a child you will love.
(Leighty making a raspberry)

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