Thursday, May 30, 2013

What I want vs what I have

Let me first say that every person who has a special needs child has a different walk.  So what may be an issue/concern/wish in our walk can be very different from someone else's.  I realize all of the things I have to be grateful for.  My daughter walks unassisted, yes clumsily at times, but walks.  I know this is a blessing.  It is however, sometimes frightening, at how easily her balance many times she falls and the injuries she sustains.  When you have a tiny, unpadded body, that's rough on a girl. I also HATE when she takes a blow to the head in a fall.  It is always very nasty and when you know your child is seizure prone and has some things in her brain that aren't normal anyway, you just don't want to see that happen.

I often wonder if there will come a day when we can go to a playground and I don't have to stand guard over the equipment bc of the drops or the other kids that just brush by her can cause her to go down one of those drops.

I want there to be a day when I don't have to explain to a restaurant cashier why my child doesn't/can't eat and that look of pity they give me when they feel so awkward after hearing why.

I want there to be a day when I'm not consumed by sanitizing carts and highchairs...and wondering if it's safe to put her in the midst of other children who may be sick.  Because you all know sick is not good for this girl.

I so clearly remember sitting in a a developmental pediatric doctor's office and her telling me that our world should not revolve around Lillian.  I have to just laugh out loud at such a ridiculous statement.  So much of my life has to be governed by what is best for her health. (especially when the pulmonary doctors are telling you to go into hiding OCT thru May bc of flu season)

You know she's never been to the zoo or the Children's museum?  You know why?  She's terrified of animals and the Children's museum, hello, talk about  kid germs.  I mean seriously these are things I have to consider. Even family functions cause me some level of stress just due to the possibility of sickness.

I'm ok with all of these things....she won't suffer from not spending time on a playground, she is able to be sat in a highchair and a cart...she enjoys food in her mouth even if she can't swallow it.  She's never been to a zoo or museum, and her life is not going to be altered bc of it.   This I know.

There are just times when the walk is hard.  I'm glad I don't carry the burdens alone.  Even though at times it seems lonely.
Today's thoughts from a crazy Mom, walking through life with my special girl.

1 comment:

  1. well after taking a walk with my sister and our special princess again this week once again i am brought to tears again.Not because i feel sorry for my sister or her situation or Lillians special situation.Simply because i have seen this mom my sister and our special little princess together.For the first time in about 15 years i was blessed with the opportunity to spend the day with my sisters and and meet my neices and nephew yep it was awesome i also met a special little princess her name is Lillian let me tell ya this kid is just full of energy she made her way around that house and yard just as easily my boys did and thats something!In the chaos and madness of all the kids running and playing and my sisters focus on Lillian i was able to look into my sisters eyes multiple times without here her catching me and the love and compassion and strength that i seen in her eyes as a mother and care giver was absolutely overwhelming and filled my heart with joy as father of 5 and husband it has totally changed my outlook on my needs and wants Just know my sister in our short visit that you have taught me to never take the things i have for granted and to hold all things dear to me even closer because you never know what life is going to throw at you i have learned in our time together to take life one day at a time because if you look to far ahead you sometimes forget where your at.and that is a very scary place to be you are truly an inspiration to me.I just want you to know above all that i will always be here for you and your family and above all i will always be here to walk with you
    loving you always
    your brother Erick