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-St. Clement of Alexandra
I have neglected my blog for a few days, I am sorry! Each day i get quotes,sayings, and bible verses sent to my email, and its been so great lately because i feel like each day, they are speaking directly to me. Lately every thing i see i feel like it relates to what we are working towards or a situation that our family has been through. Maybe its because i have learned in the past week to take more time to notice the little things, or maybe its GOD just reminding me he is always here. the support we have received is overwhelming, and just astounding. I mean, obviously i know people care about us, but its amazing when you see first hand, everyone working together to hold us up when we cant hold ourselves, or to make us laugh, or leave a note, or even send us a card. I cannot say enough how truly blessed this family is. i know Khloe can sense everyones faith in her. this past week more than ever, she has had this drive and motivation to sit up and now crawl. She can get around, dont get me wrong, but its not what the psychical therapist considers "normal" ... each day i grow to hate the word normal more. its hard to explain what she does to get from place to place (mainly to our dvd collection these days!) but if i absolutely had to try to explain it, i would tell you to picture khloe's head on an inch worm. she uses just the trunk of her body to 'inch' across the floor... and trust me, shes quick. i can already see, there will be no limits for her. she wont allow it.
so today i found in my email the quote above about hope. its funny because these past 2 days especially, i feel hopeful. i know you are all thinking cerebral palsy doesnt really allow for much hope, and when you hear that someone has cerebral palsy you automatically think of a wheel chair, but thats not always the case. yes, a large part of people who have CP end up in a wheelchair at some point...maybe when they are 2..or maybe 92. either way, thats not always the case. khloe may never walk, and i fully understand that. but these days, i find myself thinking, khloe may walk. maybe she wont stand up on her own and take her first steps the way lexi or moose did, she may need assistance, but she may walk. that to me has been a big step in my thinking process. i feel hopeful. so as we have been working with her on her kneeling...because it will help build strength in not only her legs, but hips and spine as well, she been responding great. she is now poking her butt up and trying her darnedest to get up on all 4's! she still is not strong enough, and that i know wont happen overnight, but its progress!!! again, leaving me very hopeful. I just know shes a fighter. I can tell by all that she does.
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| *Photo by Alexis* Khloe while she was 'crawling' around |
In all of my hope, i have some selfishness...i wont lie. in the beginning of all of this, i kept hearing about everyones kids meeting milestones, gaining weight and growing, it was so hard to hear. i think a few times i almost smashed my phone or computer, because i just couldnt understand why 3 month olds were doing things khloe couldnt. why 8 week olds were bigger than her..comparing my kids to others causes me to get upset. not mad, but hurt. obviously. but it almost makes me resentful. i need help with that. i am sure its something else i will learn on this journey... but sometimes i just dont want to hear about everyone else's children doing so well. i have been praying for guidance, and wisdom so i know what to do in these situations, and how not to be so selfish. I want to be able to be happy for others, truly happy, and not just say it and grit my teeth to keep my true feelings a bay.
but as far as today goes, i am hopeful. because if i limit my hopes, i will become hopeless. so today, and from now on, i have no 'high hopes' because no hope will be too high...i have enough support, i have a hardworking family, and a determined little girl-- and we have the strength of the lord. separately we may be weak...but when all of us are combined...we can take the world on!!
i apologize for neglecting my blog for a few days...and also for making this blog a little pitiful--but i just wanted to get that out about feeling resentful and hurt. its something i have been trying to overcome, and hopefully this will help. thanks for listening!
*update* Khloe did receive the name of her PT it will be Amy from Austin PT in Roscoe, NY which is close to us... they are just finalizing paperwork and hopefully next week i will have a PT blog for ya'll to read!! and maybe more info on her specific type of CP!!!!
Dearest Jackie,
ReplyDeleteIt is perfectly okay for you to feel the emotions you are feeling, give yourself permission. Every single day as you learn more and more, not only about Khloe, but about yourself and your strength. You will also come to realize that things may be said out or pure ignorance it is at that very moment when you are ready to choose to "educate the ignorance." I agree with you that Khloe is to not be underestimated. My grandson is 1 day younger than Khloe and he is working on his army crawl which sounds like the same that Khloe is working on. I remember when I was 3 or 4 yrs. old and I was in the car with my mother in downtown Middletown. It was night time and pouring down rain. She had noticed a friend standing on the sidewalk trying to keep himself dry as he was waiting for the city bus. I remember her rolling down her window and inviting the young man into our car so he could get some relief from the rain until his bus came. I have never forgotten his name was George, my first encounter with a person with cerebral palsy. If anyone was really paying attention to this story they would have seen a "normal" capable individual that was living his life on his terms and not according to any label of condition. The doctors have given you a name to a condition for your education. However, Khloe, like George will accomplish and live life on her terms and not according to a label or other people's expectations. She is a very strong little girl, that will rise to b as long as no one convinces her otherwise.
thank you so much Andrea!!!
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