If I was supermom, I would be able to fix all things. Sure, give me the newest gadget, a computer or something to put together and I could probably figure it out is a short amount of time....give me a micro preemie...and I am lost. I fail in this part of life. I have given it my all...and then some. Told by all that the worst was the NICU stay...it was pretty bad. Not knowing from one day to the next if you'd get that dreaded phone call or walk in with the nurses faces looking grim and a box of tissues strategically posted close at hand. But as the years have gone on, I have experienced the whole NICU stay, double laser eye surgery, double hernia operation, RSV and upper respiratory infections several times, genetic testing, strabismus surgery (to correct crossed eyes), a g-tube placement surgery, seizures and epilepsy, spinal taps, fevers that were to high to even imagine, throwing up on a daily basis, not eating solids, developmental delays, muscle tone issues, deafness and hearing aids, being non-verbal, blood-work, blood-work, blood-work...oxygen tanks/machine, breathing treatments twice daily since the NICU stay, medication and lots of it everyday....oh the list goes on and on. Not to mention the looks and stares from people, some of which are staring out of curiosity, some for pity and others that have no clue, think I dont know how to keep my son quiet in a store or public place (yes, he is very loud at times with his Ahhha and ugghs)...so no, the NICU stay was a piece of cake for us.
We cant plan on doing anything because well, we just cant. There is pretty much an unknown with us. It is unknown what tomorrow will bring, far different than a normal, non micro preemie. So planning on going out to dinner next week or taking the family somewhere for a fun weekend is usually voided out by a hospital stay or sickness. Sure, our son is not in a wheelchair, he doesn't have severe CP, he is not blind, and much more...but he does have issues very similar to those that are. Its just that much of his issues are not necessarily seen. We see it and live it everyday. I am not supermom. I sit and cry like any mom would. I don't want my son to die...I don't want any of my children to die for that matter, but I am mainly referring to my micro preemie in this post. He has beenthisclosetodeath on several occasions...and not just in the NICU. I don't want to have to use the empty plot that sits right next to Nick. I don't want to ever have to have that sick feeling in my stomach, that only a mom who has lost a child knows. The unable to help or do anything. I don't want to have to cry so hard and so long that my face gets burnt from tears and wiping the tears. I don't want to have to make life changing and risk taking decisions. I don't want to have to explain why, how bad and how long to anyone. I want to be a normal mom...not a supermom. I want to be able to watch my child grow, thrive, be happy and healthy. I want to be able to get angry at crayon on the walls. Be able to plan and have a 13th birthday party blowout for my kid. Be happy at a new thing learned. Be sad because of a scrap on the knee...not another hospital stay or an IV. I don't want to have to know how to give Diastat rectally or give and understand what a bolus feed or continuous feed is. I don't want to know the medical terms. For that, I would have become a nurse. But I do. It was not a job I wanted...I just wanted to be a mom to lots and lots of beautiful kids with my husband that I am madly in love with. I thought I'd have it easy. Not easy in terms of homework, quiet time or shopping...but easy in terms of healthy kids and doing normal, fun things. No parent should have to stay up all night worrying about their child in the hospital or having to figure out if we are making the right decision on a very needed surgery. Some may say that we should have stopped after just a few...that we were bound to get...this. But its not like that. I wouldnt trade any of them in...not one.
See, I am only human. I can only take so much God. Miscarriage after miscarriage...sure, I have cried...but I have also been OK. Loss of a child...I have cried and still cry...I am not OK with this. I know it was meant, but no child should die. Criminals and evil minded people should be the ones to go before children. All my worst fears have come true...all of them and I am not supermom.
I can't be here at home taking care of sick kids, going through some "things" myself, cook, clean, wash, do homework with the kids, make like we live a normal life, and be at the hospital with Kenny...its just impossible. Physically and mentally impossible. I am trying and think I am doing a pretty good job at it...but I am tired God. I am really tired. I, well...we need a break. I want my kids to be healthy. I want to be able to finally sit back and relax. Be able to have friends, socialize, be part of my other kids school doings, go on a date with my husband....heck, cuddle at night with him without having to worry about feeds, throw up, etc. I want to be me again. God, taking Nick from me and making Kenny so sick and scaring me several times...has taken a lot of me away.
We have been blessed with great family and friends and a many kids...but I am scared because I am not supermom...
I'm just Michele.