Once every few months I can't get to sleep at night. It's as if once the house is settled and quiet my mind just turns on and the thoughts/worries/concerns kick in and I can't shut my mind off. In all reality, these worries are always in the back of my mind. I could be thinking about 1 or all of them at any given time but usually they can be kept at bay. Not last night though. I believe all parents share a lot of these concerns but as Kendall's parent I definitely have some extra worry(or at least what I consider extra). So, I thought I'd share them because surely I am not the only parent out there with concerns like these and I KNOW other parents of kids with special needs have these same worries. Some of my concerns are minor and may seem vein in a way and others are huge. I realize some of them have pretty simple answers and I just need to investigate what those answers are. I also realize that some have no answers and are more of the "wait and see" type. Those are the worries that are the hardest ones to deal with. I'd much rather have an answer or be in the know than not know anything. However, there aren't always answers when it comes to raising a child with special needs. Especially with a child as unique(and awesome) as Kendall. Alright, here's my top 25 list of concerns:
1) What happens when she turns 18?
2) What medical insurance will work for her when she's off ours?
3) What happens to her(and the boys) if something happened to Dan and I?
4) Will she live with us forever?
If something happens to Dan and I(when we are at least 100 years old)
will one or both of the boys take care of her and let her live with them
if need be? Is that expectation too much of a burden to put on them?
6) How are we going to handle puberty with her?
7) Next year in middle school, if she has a male teacher, how do they handle puberty?
8) If she gets lost one day in life, will people understand her when she says what her name is? I need to order a bracelet with her info on it(easy answer for this one).
9) How will she get along in life when she can hardly read and write?
10) Are kids going to laugh at her today or give her weird looks?
When strangers come up to her and ask her questions and she answers and is hard to
understand what type of reaction are they going to have? Good? Bad? Indifferent? How will she/I react to that?
12) Are kids going to treat her just like any other person out there? Are adults?
13) Is social security going to be enough for her to live on once she turns 18? I know the answer is no but how much is enough?
Am I screwing up our family' s financial future by not working? I know our family is better off for the time being with me home. It's calmer, it's more balanced but the financial concern is always there.
Will she need more surgeries? I already put off Drs appointments that
are due because she sobs the entire way to see them and has horrible
anxiety when it comes to Drs.
16) I need to set up a special needs trust. I need to set up a living trust.
17) What will Kendall do if she can't/doesn't go to college?
18) Will I be caring for her 24/7 when she is out of high school?
19) What programs are out there for kids with special needs that don't go to college?
20) Will she be independent enough to have a job of some sort when she's older?
21) Will she stay healthy?
22) Will there be more hospital visits/stays? What will they be for?
How do the boys feel about Kendall? Will they feel comfy having their
friends over as they get older knowing they have a sister that is
"different"? How will those friends react to her?
24) Will she ever be bathe herself or will someone always have to help her?
25) Am I doing enough for her? Should I be doing more?
The list could really go on and on. I'm pretty protective of Kendall and the above worries are just some of the reasons why. I just wish I had all the answers. Not knowing can be a horrible feeling at times. What I do know is this, Kendall is one happy girl and she goes through life with a pretty great attitude and for that reason alone I'm really lucky that she is my daughter.
- Courtney Powers-Graff
- Married mom of 3 not so little ones anymore but they still keep me grinning and giggling(most of the time). Kendall, age 12, Brady age 8 almost 9 and "baby" Chase who is 7. I have been married for 14.5 years to Dan Graff, who I think is the best dad ever to our kids. He certainly makes me grin and giggle to this very day. I have spent my non mom career working in recruiting on and off over the years recruiting Software Engineers. Other than my kids my most favorite thing to do in the entire word is ride horses followed by Kung Fu, where I earned my purple belt last year. I have been riding since I was 8 years old, with some time off here and there but I always go back to it. As Winston Churchill said, "There is something about the outside of a horse that is good for the inside of a man"(or woman in this case)!
- ▼ 2013 (3)