As a mom, I find myself constantly in the extremes. I don't know if this is what all mothers feel, but as a mom of a special needs child I am forever snarled by extremities. We have all heard that with great difficulties/obstacles/hardships comes great reward - and as I continue this journey, I find that it is so true. With the greater struggles comes the most prized moments of joy and relief. I remember that when my mom struggled through her battle with breast cancer, that when she had a "good" day it was really a good day. Most often we don't realize just how great the small things are until we have walked through the shadows of despair. Thank you God for showing me your Glory through extremities.
Life has been crazy busy lately - is this what I am to expect as time continues? I have fantasies about a Norman Rockwell painting where everyday life just seems like a lazy Sunday afternoon on a porch drinking lemonade. Did this life ever really exist for anyone or was it simply Norman's fantasy as well?
I remember as a child hearing old people (or so I thought at the time!) talking about how time flies. I had no clue that they literally meant that it goes by so quick that you don't know even what you did or had time to do. I am still trying to process that it is already the new year and that Kendal will be turning five in two months. Five years old? How is that even possible?
I remember wishing away the different times we went through especially trying times, but even now I long to get some of that time back. I see my 90 year old grandmother and see that all she does now is look back at the memories of her life. Does she look back with regret of things she did or did not do with her life or complete happiness and gratefulness? I don't want to look back wondering why I always thought next week/month/year would be so much better than today. Instead of wishing times away this year, I truly want to embrace time despite my hatred for it's speed. To actually swallow down the hard times a little slower so I can be more grateful during the joyful times.
All that being said....the last few days have been a struggle for me. Kendal is coming up on a life stage for going to Kindergarten and it is looking as though the school system will probably not recommend her to start this year. This is just a strong hunch at this point as her IEP to determine this will not occur till April, but based on Kendal's level of skills (mainly self-help), I do not expect her to start school this year. For those that don't personally know Kendal or I guess any other AS kids, Kendal cannot do alot of tasks on her own. And when I say this I would like to add a DISCLAIMER........Kendal is my child. She is beautiful, incredibly smart, and full of love and life. I do however know her current limitations. I am not insulting my child's intelligence or abilities by pointing out these limitations or in anyway saying that these limitations won't be overcome tomorrow.......END OF DISCLAIMER. With that out of the way, small menial tasks such as drinking out of a regular cup, using the potty, and following instructions of getting in line and sitting down (in a classroom setting) on her own are impossible. I know these things - I am her mother. Still, to have someone else point out these issues is incredible infuriating. I know this makes NO logical sense but as a mother there is nothing more personal than my child. And sometimes facing reality is just something I don't want to do.
An example: I recently called the ballpark to look at placing Kendal on a T-Ball team. I feel like we need to expose her to everything else a "typical" child experiences. The ballpark informed me that they have a special team for special needs kids designed to be appropriate for their particular skill levels. Logically this sounds like a great program. But I didn't want to hear that Kendal playing on a regular team would not be advised based on her skill level. I want my kid to be like everyone else and playing with the "regular" kids. I don't want her segregated, and yet I know this is just the beginning.
I know that Kendal will always be drastically different from her peers. I know that she will always be somewhat of an outcast throughout her life with people that don't intimately know her. This is not being said to be ugly or mean, but having a child that can not speak will greatly inhibit her from making friends and building relationships. I HATE this ugly truth. I HATE that most people won't know how cool Kendal is. I HATE Angelman Syndrome and how it has stolen my daughters voice. I hate, I hate, I hate.
Again with the extreme feelings. Being so filled with hate over how this disorder has robbed her and yet being so thankful and grateful to God that she is healthy and loving and happy all the time. Trying to accept that she is how she is and that she will never be "normal" is a constant struggle for me. But for me now, I will keep concentrating on the moments of extreme pleasure and joy. I will try to push away my hated for AS and intake the experiences (good & bad) that come along with raising a special needs child. Everday is a new day with new dramas and luckily, God is there for me every step of the way.
