I have been thinking about something funny lately and I just had to write about it. It has also been a crazy long time since I updated my blog, so I thought this would be a good subject.
Ok, here goes: I wonder if I am weird. I wonder if all moms of kids with special needs get to this point or if I am in the minority.
I feel like my life is completely normal now. I don't see Grace the way I used to. This might be a good thing and it might be a bad thing.
When we were first figuring out that something was wrong when Grace was not meeting her milestones, I had this crushing feeling that I would never have my old life back again. It took me a long time to even come to grips with the huge task we had been given as parents of a special needs child. In my earlier posts about our journey with Grace, I go into greater detail about this. It took me several years to get back my love of extracurricular activities and even a desire to cook dinner. When I found my circle of friends on the internet who were going through the same thing I was, the window to a new life was opened.
Grace is 6 now, and so many things have changed. She attends school full day and is one of the most popular students in school. She scoots around the house on her bottom, exploring and giving a book to be read to anyone she can find. She has about 6 different laughs, and each one sends all of us into fits of laughter because of how silly they are. Her newest is what we have dubbed her hyperventilation laugh where she breaths in and out in a laugh quickly. She will put her arms up to be picked up and snuggle with her head on your shoulder. This is not what a typical 6 year old would be doing, but it is our "new normal" as I have called it previously.
Which leads us to my point...(you were wondering when I was getting to that weren't you?) I don't feel that my life is lacking in any way. I do not mourn for what she cannot do anymore. When I see other 6 year olds, I don't feel sad like I used to. I am not obsessed with therapy as I once was, but therapy is just a way of life now. She gets to go ride a horse every other week, and visits the ot and speech therapists once a week. If she has a day where she won't cooperate with the therapist, I am not devastated and worry that she will never "get it". If she never talks, I am fine with that. If she never walks, I am fine with that (although I do have faith that she will do both). It is kind of like hope for the best but accept the worst kind of thing. The silly thing is though that I don't see the worst as the worst, just Grace.
I do have a mixture of anxiety and resolve when it comes to the far future though.
What will it be like to have an adult child that stays with you forever? We have read so many stories of others who have made the best of this situation with great amounts of skill and preparation. One boy on my list is in his twenties, owns his own home and has a staff of wonderful caregivers 24/7. This is what I hope for Grace's future. She can have a happy fulfilling life as a part of society, and we can make that happen. I was so worried that I would lose the time alone with my husband that many couples look forward to after their children have left home, but now I know that we can have that time if we prepare well.
One thing that has been an adjustment is having caregivers be a part of the family. Jenny is our respite caregiver now, and has been for a year and a half. At first it was hard to give up my total control over Grace's care. Now that Jenny knows Grace's needs and I know that she cares for her, I can relax and let go of some of that control.
There will be difficulties ahead, and I am not naive to that. Puberty will surely bring many new challenges, but just as we have conquered past challenges, we will conquer the new ones.
So back to my question...am I weird to not see my family's differences? Am I weird to not long for the typical child as I used to? Am I weird to be completely satisfied with a child who falls far short of typical? Is it wrong to not be so obsessed with therapy and trying doggedly until Grace meets the next milestone? I have to admit that I secretly laugh inside when a worried mom obsesses about her child who is 13 mos old and not walking yet, or 3 and only saying a few words. I feel like screaming---everything will be fine! I wish someone would have screamed that at me...or maybe not. I think that is something you have to come to find out on your own, whether your child catches up or not. I will continue to give her challenges to meet and goals to achieve, but I won't blame myself and stress about it if she doesn't meet them either now or later. She continues to surprise us. Just when we think she will never "get it" she will suddenly start doing it. I don't underestimate her abilities, and I am accepting of whatever she will never do.
She has done nothing but make our family better and the people around her better. What more can we ask for?
