Reflecting Back

Parker just turned 10 years old and it has me thinking back over the last 10 years. It has been extremely difficult with an unknown diagnosis for so long, undiagnosed epilepsy for many years and then attempting to control it through various methods, several surgeries, many hospital stays, ambulance rides, ER runs in the middle of the night, and even more than I want to dwell on right now. The point is that we have had a rough time, but, it has also been great. Parker is the sweetest little boy you could ever meet, he is cute as a button, he is loving, smart, and has a great sense of humor. I could not imagine our lives without him and even though we have had a real rough time, it has all been worth it. Would I do it all over again? I don’t know if I can answer that, but, I am glad we have been through the worst and we lived to tell the tale. Bad and good time’s aside, I have been thinking more about how my feelings have been in play throughout Parker’s life thus far. Unless you have a special needs child, you may not understand what a mother of a child with special needs feels and how delicate she is at any given moment. If you do, you understand what I am talking about. If not, I will try to explain. As a mom, we always want the best for our children. We want them to excel whenever possible and we want them to shine out like a star. This is where the stage mothers come from. They are not trying to be irritants, they just want their child to do and be his or her best and shine. Sometimes we go overboard and you will have a Mama Rose from the musical Gypsy. I don’t think that would ever be me because I am just not that pushy, but, I think you get my point. Most of us, fall somewhere below the Mama Rose type and we do all we can to help our children succeed.

When you have a special needs child, you still want the best for him even though his best is not anywhere near what a typical child would do at the same age. You still feel such excitement and still feel accomplishment at each stage of success. That is as it should be and is great. The problem is that we also compare and contrast our kids with other typical kids. It is not something we can really control, it just is that way. It is human nature to want to be the best. We want to get the highest score on a test, win a sporting event, deliver the best speech, get an award for our talent, get a scholarship or win a grant and on and on. We love and are so happy for what our little guys can do at any given stage, but, we mourn what ours don’t do at any given time. It feels like a death in the family. Each time we see our children near other typical peers, we feel as if someone died. We see the stark difference in abilities and it hurts. When we go to a birthday party or a family get together we can see more vividly what Parker can not do because the contrast is so obvious, especially for me. Every time we are around other children it hurts and from what I have observed, nobody ever notices the pain I feel. It is as if someone died, but, nobody knows about the death, so it is my own private mourning. I don’t know about other husbands, but, mine does not feel the same nor has he ever felt what I do. My gut tells me that it is just a “Mom” thing. Men just react to things differently than women and that too is okay. My problem is that while I was mourning the loss of what my son might have been if not for the disability, I was mourning alone. It is so much easier to mourn a loss with others who feel the same. In my case, I tried to share this loss with my husband but, he does not feel as I do. I have always had my mom because on some level she can relate to my feelings and she feels some of it as well, but, it is not quite the same. So, over the years I have learned to try to feel happy for the other children and feel bad for what Parker cannot do and happy for what he can do.

It is lonely and sad, but, as time goes by it does seem to get better. I used to feel horrible watching the other kids run, play, talk and laugh with each other and see Parker so alone and unable to interact with the other kids. I tried to get him to do what he could, which usually was very little and than we would sit out what he couldn’t do. I would try to put on a happy face and get through each event and finally breathe freely once arriving back at home. At night, I would cry because my boy could not and probably never would do most of what the kids we just saw were doing. I was mourning a loss and I guess maybe that was a good thing. I will never say that I have learned to get past these feelings; but, I have noticed that over the past year or so, it doesn’t hurt quite as much and I don’t feel the need to go home and cry myself to sleep anymore. Maybe I have come to terms with my loss and I am just able to cope better and that is a good thing.


About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Mowat Wilson Syndrome, Mowat Wilson Syndrome, disability, special needs and tagged , , , , , , , , , , . Bookmark the permalink.

5 Responses to Reflecting Back

  1. This is a beautiful post..every mother wants the best for thier child..and you certainly come across as a loving mother ..Im pleased that you feel the worse of times are behind you…good luck to all of you..and my best wishes to Parker..Eliza Keating

  2. Bria says:

    Lori, for almost two years I have watched in awe as you go about your role as Parker’s mommy. You are an amazing mother to an amazing son. Parker is such an inspiration to me, as are you! Everyday that I get the opportunity to be with you guys is counted as a blessing. Daily I am seeing Parker grow leaps and bounds. He is the cutest and funniest little boy I have ever met! When I go home at night I thank GOD for allowing me a daily show of strength and courage. You are the strongest woman I know, and you do such a fantabulous job with Parker! I can only pray that I will someday be half the mom you are. I love you lady!

  3. Anne-Sophie DaCosta says:

    In college, I had the opportunity to work with a severely disabled teenage boy. His big goal was to take the bus on his own like the “regular” kids. It took a couple of months, but we finally convinced his very nervous mother to let him ride the bus from his private school to my house (a ten-minute ride) all by himself. The smile on the boy’s face as he got off that bus was so worth it! His next goal was to travel to England by himself… not sure if his mother let him, though!

  4. Kami says:

    I loved your post! I think ANY mom can relate to you on some level because we all want our children not only to be happy but successful too. While I am lucky that I don’t have a special needs child, one of my playmates as a child was (not sure what she had as I was 6 at the time) and my son’s best pal at school is autisic. I think that having a special needs child playing with one who is not helps the special child to want to be more like his friend and helps him grow in so many ways. It’s good for BOTH children! So chin up! You are doing a fantastic job! He is happy and has had some successes that you should be proud of! (I.e. Dancing!)

  5. Lee says:

    I’m sure Dad’s do feel differently and express it differently, and I think it depends upon the Dad. Women are often more in tune and expressive with there feelings. My mind does wander to that dark place sometimes when I realize that there is not going to be any little league, band concerts, college graduation, and no one-on-one basketball game in which my son beats me for the first time. It kills me, so I try not to go there. Maybe that’s not the healthiest way, but I’m not so sure it’s not. It is also painful when Lori goes there, so instead of being supportive I try to get her to concentrate on the positive things we have in our lives, of which there are many. I guess I could do better. Sorry sweetie.

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