Wednesday, July 15, 2009


I've been thinking a lot about acceptance. About it in general and about it specifically in terms of Emma. Having children changes your life. Having a special needs child changes you.

I had never thought too much about children with special needs before Emma other than the standard pregnancy worries and the thoughts/prayers I would say for others with special needs. I didn't go into any nurturing profession like nursing or teaching that would expose me to the real world of raising a special needs child. So, when I finally realized that the road ahead for Emma and our family was more than we originally thought, I have to say that I felt unprepared.

When I think of my precious little girl with the easy smile, the glint in her eyes, the giggle that makes you melt, I think that my life couldn't get any better. That our family is perfect and just as it was meant to be. But, when I think of all the therapies my baby has every week just to try and get her muscles to move or enable her to communicate to reduce frustration, I want to cry for all the play dates, park outings and field trips she is missing.

Recently I've read some blog posts from parents who are clearly at peace with their child's diagnosis. I would love to say that I am there, but I am not. I struggle, some days more than others, to enjoy the moment rather than worrying about the future. I struggle with the stress of managing the health insurance struggles, the appointments, feeding Emma (oh, the feeding, that deserves a post all to itself!), feeling like we're not doing enough, feeling like we're doing too much, wondering what effect this will all have on Julia and Emma later in life, etc. You get the point here.

Lately I've been making an effort to spend most of my time living in the moment and accepting that we are doing the best that we can each day to nurture our girls to become strong women. I think of all the time we spend together as a family and all the adventures we undertake together. I think that I've learned more in the last 21 months than I learned in all of my 35 years and that I now know the true meaning of unconditional love. And I know that acceptance will come in it's own time. Just like I know that Emma will exceed all of our expectations...in her own time.

4 Comments from readers:

AshleyS said...

Day to day--that's the only way you can function with a special needs child sometimes. And I often forget this very thing!! I know that for so long I spent 90% of my time down in the dumps. Now it's probably only 50%! LOL! Still not great odds, but I consider myself much improved . . .Clayton's smile and the fact that he is relatively "healthy" these days give me the push I need. For those first couple of years he just plain didn't feel good and all the hospital visits just wore me down to the bone. At least we don't have those that often now.

I'm just rambling, but I guess my point is we all have to come to a certain degree of acceptance to function, but I don't think we need to be expected to not get angry, jealous, etc. when we think of what might have been had our child been "typical."

Tricia said...

I can honestly say that it has just been pretty recently that I have become very accepting of everthing going on with Emmi. By accepting, though, I don't mean I am comfortable with all aspects, I just no longer mourn the life she could have had. There are things that will just never go away. I will never be at ease or happy with spending hours a week at various clinics at Texas Children's. I will never feel safe when Emmi even gets a simple illness, because I always expect the worst. I will never get used to the testing and procedures. But, I also realized lately that I have stopped being sad about the things she won't be able to do. Perhaps because I am now seeing the things she is able to do and how much she really enjoys those things.

Acceptance does come. Ease? Comfort? I am not so sure about. I think I live just on the other edge of those.

Also, do you find when other things happen, that is when you get really mad or frustrated. For instance, when Jill started having migraines, I was so mad. I kept thinking, "Have I not been given enough to deal with? I have one child with major health issues, why are you messing with my 'healthy' one?!"

Anonymous said...

Your post on this topic pretty much sums up how I feel all the time. Ethan continues to go beyond what has been expected in every department, so I try to focus on that and keep my chin up. I'd say that not a day goes by that I don't feel angry or sad or jealous about something though. Just gotta keep on keeping on. For what it's worth, I think you guys are doing a tremendous job parenting BOTH of those beautiful girls and I have great respect for you!

Wherever HE Leads We'll Go said...

I cannot remember how I found your blog - maybe through CP Moms group on yahoo or through another mom's blog. ?? I have enjoyed reading about your girls - they are beautiful!

This post really hits home for me today. My daugther Emily had a really tough PT session today - complete with meltdown and (almost) hyperventilation. Watching that and trying to comfort her afterwards really bummed me out. Why can't my daugther just play and hang out with her friends, why do we have to worry about equipment and orthotics and therapy all the time?

I know that I have a lot to be thankful for. I am thankful that she has the equipment to help her, but there are some days when I think "man this really stinks!" (today happens to be one of them). I have no doubt that tomorrow or the next, I will feel better and will be able to focus on all that she has accomplished, but I also know days like this will come again.

I think the key is finding a balance between allowing myself to have down days once in a while and also having the days where I celebrate who my daughter is and what she has been able to do. Those celebrations (and her beautiful smile) are what get me through those down days.