Tuesday, August 22, 2006

The Surreal Life

*This post was inspired by Neonatal Doc’s post where he wondered what parents in this situation wanted to hear. I thought it might be interesting to talk about what was going through my mind those first few years after having Dear Son, who is severly retarded.

We had been preparing for Dear Son’s birth. We had taken the Lamaze classes which were weird in and of themselves. The room was ready and I was definitely ready to deliver this baby. We had wallpapered the room, my sister in law and I, in a white background with tiny green hearts; so tiny in fact, they looked like dots. The carpet had just been installed and the room was basically a frilly, girly white with a few brown bears tucked in for good measure, to make it look more “boyish”. I had passed all of my pregnancy tests with flying colors and other than having morning sickness for the whole nine months, it was really pretty uneventful.

I had contacted our insurance agent a week or two prior to Dear Son’s birth to make sure his life insurance policy would be started the day he was born. A simple phone call, the day he was born, would be all it would take. Everything was in perfect order.

The baby was gaining weight and the obstetrician wanted to do a c-section due to the baby’s large size. He was estimated at almost ten pounds, so he was in a hurry to get this done. Three days before Dear Son’s due date, they did a c-section. I was so disappointed. I had wanted a “natural” birth so bad. Dear Son was born weighing in at 8 pounds, 12 ounces and 21 inches tall. He developed breathing issues soon thereafter and seizures were noticed the first day. Shortly thereafter, he was transferred from Suburban Hospital to Big City Hospital were he remained for one week. It didn’t take long for problems to surface and at ten weeks old, we made our first visit to Big Academic Medical Center.

I had called our insurance agent and he said he would add Dear Son on as soon as we got home. Time flew by and Dear Son continued to have issues. By the time I arrived at our insurance agent’s office, Dear Son was deemed “uninsurable” since the data of his hospitalizations had already made it’s way into the Medical Information Bureau.

I remember distinctly the first few years of Dear Son’s life. Dear Son has issues from the day he was born. I don’t ever remember the conversation, if there was any, that things were going to be different. I do remember the conversations that I wanted to hear. I wanted to hear a diagnosis, I wanted to know what caused these issues, I wanted to know if I had any other children, if they would be like this, and more importantly, I needed to know what to do, how to care for a child like this. Up until a few years ago, we never had a diagnosis. We did have genetic counseling and I decided that I didn’t want to take the risk of having any other children that had “issues”.

I remember distinctly, going to the Easter Seals with Dear Son and looking carefully at the other parents of disabled children, or rather, at their other children, to see if they were disabled. More often than not, some of the other children didn’t suffer from the same affliction, but had other issues. I decided at that time, I wouldn’t take the chance of having any more children on the chance they would have some disabilities so I had my tubes tied. My reasons were very selfish at that time. I mean, having one disabled child was one thing, but having more than one, was well, overwhelming. What would people think? I thought perhaps our genes didn’t go well together and we should just quit where we were. I thought if we were this unlucky to have one disabled child, then what would make me think that we could beat the odds and have a “normal” child? I am not proud I thought like this, but that was exactly what was going through my head.

For the first few years, I would take Dear Son to his physical, occupational and speech therapy and wonder, “why me?” I felt woefully inadequate. Yes, I took good care of Dear Son and I loved and adored Dear Son, but I just figured if the Lord was picking some parents for Dear Son why wouldn’t he pick a physical therapist as his mother, or a special education teacher? Why would he pick me? I was a business person. I had no interest in Special Needs children. None. Period. It seemed like an odd match.

Those first few years were tough at times. There was never a firm diagnosis in the beginning, only a bundle of hospitalizations and doctor visits, like a never ending episode of ER. I think the thing I wanted most, was honesty and a straight answer instead of sugar coating things.

Every parent dreams of what their children will be like. Normally, as time goes on, you learn that your child doesn't always grow up to be the child that you "wanted" them to be. After all, if we could select the traits our children would have, there would be a lot of things we would wish for them. When you have a Special Needs child, you learn the things that they are "not" going to be on the first day of their life. That's a big adjustment. It's also difficult living in a world of people who "live" through their children. You forever live on the outside of such conversations that people have when they say, "I don't know how we are going to afford Harvard" or when your peers are talking about how they are going to afford certain things for their children. Over time, you learn that as parents, we all have unique challenges, and if you look real hard, you can find the things that you share in common versus the things that make your child different from the others.

In time, these things became less and less of an issue. I began to love and enjoy my son for who he was, not who I wanted him to be. I began to look at the world and his world differently. It challenged many of my beliefs. It was also a total mind shift away from who I was, always driving forward and trying to achieve as much as possible. There were no bragging rights here. My child was never going to be first in anything, ever. You can’t begin to imagine how difficult this would be. If you want to try to imagine what this would be like, then do this exercise, the next time you are at a party and parents start talking about their children. When they begin to speak, keep a mental note on how many parents brag about something their child did. Take special note on how other people respond with another story about their own child that tops that one. When you do this, you will begin to understand what it might be like. When you have a Special Needs child, there is nothing to brag about. Nothing. Ever.

But that’s only how it is when you are living in your world. Once you begin to see them for who they are, your life begins again. You start to look at things with a different perspective. You begin to see all of the wonderful things that they are and that they will be. You begin to see how they enrich you, and then your family, and then the community. Kind of like throwing a rock into the pond and seeing the waves flow out around it. You begin to see the beauty that radiates from within them. You learn to see the little things that they think are important and that you take for granted. You learn to see the beauty in the simple things. You learn patience. You learn gratitude. You are humbled. But most of all, you learn to be thankful. Thankful, for all that they are and all that you have become. That’s the difference. And nobody tells you that. You have to learn that, for yourself.


Wrkinprogress said...

In my book, you are most definitely a Dream Mom. Every child should be as fortunate in that department as Dear Son.

Blessings and peace to you both.

Anonymous said...

well-worded post...
Welcome back!

wolfbaby said...

Hmm I thought you said you have no bragging rights? seems to me your son gave you something to brag about that very few parents can... that is worth bragging about!!! And you did a beatiful job of it!!!

I told Pk I thought you were a hero... i believe that even more so now.. to say like you did how you thought and how you changed.. it takes a special person to do that...
take care

neonataldoc said...

Excellent, excellent post. Thank you - I'm sorry I was so late in reading it.

dki617 said...

Dream Mom, I know.

My severely disabled daughter has been the most important teacher I have ever had. And my learning continues.

Great post!

Billie said...

Dream Mom,
I just rediscovered your blog and want to say that this post was SO helpful and inspiring to me. I have twin girls with special needs, one more so than the other. I am deeply entrenched in the grieving process and doing my best to stay afloat so I can be the best mom I can for my girls. It is encouraging to read stories of other children with disabilities and to hear of how their parents learned to accept and appreciate their kids for who they are and for what they bring to their lives. I have hope now that I will get there. I just need time.
Thank you again. You are a hero to me.

Dream Mom said...


Your post brought tears to my eyes because I remember being where you have been. I can only imagine how much more difficult it would be with "two" children and not just one.

I remember the early years well. There would be times when things were especially difficult. At those times, I would always pick up Dear Son and hold him in my arms and kiss his head. I'd wrap his arms around me since he couldn't do it. When I would hug my son, I would ask myself if this issue really mattered-would it change how I would feel or how I would treat Dear Son. The answer was always no. Holding and hugging your children during this time is important, because love and fear (grief or fear that they won't or can't do something) can not exist at the same time. The love will always override any other emotion. And when you are done hugging those girls, you look them right in the eye, and when you do you will know that the person they are is not only beautiful, but absolutely perfect. Raising Special Needs children is a real challenge and difficult at times, but no less rewarding. You will grow into your role as the mother of your beautiful girls. And along the way, it's o.k. to grieve for what you wanted, but don't be surprised when you wake up someday, and you won't be able to imagine your life, any other way.

jennifer said...

Thank you, Dream Mom, for the lovely post. You found words to describe what is in my heart, too, about my son with DS.

Blessings to you and your child.

Kelley said...

That was soooo well written. Beautiful. It's nice when you see other people who really understand that we are at complete peace with "our world". Not heros. We're just normal people who have finally realized that if we don't live our lives based on what outsiders think, then we have a fighting chance for normalcy.

Anonymous said...

Yes, yes and yes! I have a son with fairly severe disabilities, too, and, in order to get through the minute or the day, I say "If I was alone on a desert island with my son, what would I do? How would this matter?" Or I ask myself "At an earlier time in history, or in another, more natural culture, how would this look? What would I do?"
This line of self-questionning takes me out of the opinions of others mode. It makes me slow down and analyze more kindly and less harshly (to myself and my son). I can then look at true strengths, such as you mention--simplicity being primo. "Tis a GIFT to be simple, 'tis a gift to be free . . . " the Appalachian Spring melody starts. The song lyrics continue, "When true simplicity is gained, to bow and to bend we won't be ashamed. To turn, turn will be our delight; for by turning, turning, we come 'round right." I think those who have bragging rights have less chance of coming 'round right than we do, with our kids with issues. Really, I do think that is true.

Anonymous said...

I deeply appreciate your writing. It is almost like a community service! I have a severly disabled nephew, and I have struggled to to understand--without making assumptions-- what the family is going through or how to show my support. I have been afraid to interact very much, out of fear that i should cause more pain somehow, out of my ignorance. I try to stay in touch, but I realize that giving updates on my family may cause pain... Hopefully, if I keep reading your blog, I will gain better insights than I now have, and be able to be a more supportive aunt.

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