I remember hearing someone once say, that if you were with a group of people and everyone was to chuck their problems onto the table, you would quietly grab your own and sneak back out of the room.
This was echoed a few years back when I was suffering from Depression and attended Group Therapy sessions. I remember feeling like a fraud. Everyone seemed to have problems far worse than mine, and for a long time I didn’t open up much about my own difficulties as they seemed so trivial by comparison. Yet when I did, I saw the look on other faces of empathy, sympathy and relief that they only had their own problems to deal with and not mine.
On more than a few occasions I’ve found myself with exactly the same sensation when it comes to my daughter, Meg.
Before I moved away from Central Scotland I was involved for a few months in a group set up for Fathers of Children with Special Needs (strictly no group hugs) and got chatting with John. John had a son with Down’s Syndrome who was almost exactly the same age as Meg. I once confessed to him I had no idea how he’d been capable of dealing with his son’s extensive bowel problems and felt I was so fortunate Meg had never had any difficulties in that area. He replied that he’d always felt he was fortunate his son had never had the heart problems we’d had with Meg, which he considered a far worse affliction.
And the feeling hasn’t left since I started blogging.
There are other blogs written by parents of children with Down’s Syndrome who have to cope and deal with a whole range of issues I’ve never had to face with Meg; some physical, some mental, some emotional.
And then there are all the forms Special Needs takes which are nothing like Down’s Syndrome at all. Autism, for example, is one of those I wouldn’t have a clue where to begin. It is completely outside my experience.
So I’m thankful Meg is basically healthy
I’m thankful Meg’s limbs and organs all seem to be in place and working.
I’m thankful Meg’s heart operation when she was 5 months old was a success.
I’m thankful Meg can communicate relatively clearly.
I’m thankful Meg is so “in” the world.
I’m thankful Meg doesn’t hold back with hugs, cuddles, kisses and telling me she loves me.
I’m thankful Meg has friends at school.
I’m thankful Meg is in mainstream education and gets most of the support she needs.
I’m thankful Meg is so close to her siblings.
I’m thankful Meg is loved and indulged by all of our friends.
I’m thankful Meg is quite bold and confident.
I’m thankful Meg is creative (see Meg’s Kitchen Exhibition on my own blog).
I’m thankful Meg sleeps through the night.
I’m thankful Meg is toilet trained.
I could, of course, go on for much, much longer.
So on those rare occasions when I hear people comment that they don’t know how I can cope with a child with Down’s Syndrome; that they have great respect for me as it’s not something they think they’d ever be able to do themselves; I find myself thinking how bizarre their thoughts are.
What? Not be able to cope with Meg? But Meg’s so easy to bring up compared to some children.
And I don’t just mean children with special needs.
At least Meg isn’t likely to end up as a Crack Dealer, or worse, a politician.
In the end it’s the unknown that’s scary. But as with many problems, when you’ve dealt with them at least once, it ceases to be unknown and quite often you wonder what all the fuss was about.
Kim is usually to be found at his own blog, Ramblings of the Bearded One. Although you will find tales about his daughter, Meg, under his “Down’s Syndrome” category, you’ll find far more simply under “Fatherhood“
Oh my goodness! Yes! Thank you, that is how I feel! Afraid that when I enter certain blogging communities or write about a certain subject I will be greeted with, “Your problems aren’t THAT bad, what are you whining about???”
Instead I get, “I could never be as strong as you in light of all your trials!” and I respond with, “TRIALS? I wouldn’t call them TRIALS!”
Funny how perceptions can be so different.
My 2 boys are high functioning with sensory issues, some autistic-like symptoms, and my youngest has developmental delays. I thought the first time I came here I would be laughed right off the page. I thought my little struggles were nothing compared to those of others. But I have been greeted with compassion and kindness.
I guess I have learned that there is really no way to compare one person’s level of struggle against another because every situation is SO different (apples & oranges). And honestly every parent struggles in some way, whether their children are “beyond ordinary” or not.
Beautiful! I get people telling me all the time how they could have never done some of the things I have had to do. It is funny how you find you can do a lot of things that you never thought you could when your child is in need.
Like Goldie, I think a lot of us feel that way at times. My son is very healthy and, despite his autism, has fairly mild symptoms and is high functioning in terms of cognitive ability.
There are days that things are great and I feel like I can’t compare this to families that are struggling with more severe disabilities in terms of behaviors or intellectual or medical challenges, but then I see a child (whether typical or with another disability) interact so beautifully and naturally with other people.
And I ache for that instinctive ability to relate to others and with their environment to be in my son, who has to work so hard and learn so much to try to fit in.
Let’s never say that someone’s abilities mean we can’t continue to support their disabilities and help them keep learning and growing. And that we can support each other as parents facing our own struggles and challenges.
I love this because it rigns so true!
There are times where I try and be cautious what I say so I don’t sound like I am putting down the problems of others but I have noticed that everyone does have problems and issues with their children, whether typical or not.
I always get the statement, “You are such a saint, with 5 special needs children, I don’t know how you do it!”
Well, I just do, they are my children and I have to give them the best life possible and if that means breaking my head to make sure they have therapy, services, etc. Than I have to.
Wouldn’t you do that if it were your child?
Thanks for writing this and making us parents realize that we are not alone in this and no problem is too different, it is just our problems and there are supports out there if we are willing to step out and talk!
I sometimes think that too! It’s nice to know we all aren’t alone, and we have such a community of support. When people have told me they don’t know how I do it – I answer that it really isn’t too much different. Everyone has their struggles and works through them.
Great post! I found myself thinking on a similar line today and posted about it.
I think we often surprise ourselves, somehow finding strength to face obstacles we never thought we could overcome.
I wrote about it a while back and was debating whether or not to post the link, but it seems so appropriate. Hope you don’t think I am tacky. BTW, the post is from a religious perspective. It was inspired by some writings by Corrie Ten Boom.
http://lifeasaplatypus.wordpress.com/2008/05/15/the-train-ticket/
I loved this post. It is exactly how I feel. Our two year old daughter has Ds. Since she is our first child, my experience with her is all I know – and really, all I’m comfortable with. I felt weird the other day telling some friends that I want to adopt a child with Ds. They couldn’t understand why I would want to have another child with special needs. They don’t understand that for me – it is easier knowing my child will have some mental and physical challenges than it is knowing that my child might become involved heavily in drugs or sex at a young age.
It’s interesting how the challenges we each get change our perception of things.
This is so interesting, Kim, and I can see this in my own life, too: that the problems I take for granted as just things I have to cope with in life often strike others as terrible dilemmas.
When we lived in Tokyo, a good friend of ours had a son with DS. He could not speak, had had very bad heart problems and other health concerns, and needed help with dressing. But my friend took it all very much in stride and one day remarked that she was so fortunate that her son could be by himself at school without too much trouble. It gave me a whole new perspective — and it struck me that our youngest still could not manage this.
Kim, I know I already told you this, but just to make it official:
Excellent post. Your love for Meg reaches out and touches my heart. I love the bond between fathers and daughters.
When I had my kids, the doctor usually wrapped them up and handed them right to me.
No so with Parker.
The doctor wrapped him up…..and Reed swooped in and snatched him up first! I watched Reed and Parker fall in love right then and there.
And that love story is still being written.
While we do wish Parker could be healthy, we too, wouldn’t trade his issues for anyone else’s.
Your post reminded me of that beautiful memeory.
What a wonderful set of comments. Thank you all so much for your thoughts and feedback
I wondered about writing this for quite a while because sometimes it’s easier to feel overwhemed with all our fears and worries, which is what we’re usually dealing with and writing about.
Back in ’98, along with Meg’s heart operation there were several other things going on in our lives which were extraordinarily difficult to cope with. I remember once saying to my wife, “I know there are people worse off in the world than us, but their numbers are lessening.”
We’ve all felt that way.
But in this post what I wanted to explore was those times I’ve felt my problems didn’t seem worthy enough to discuss with other people.
It seems strange how we can sometimes feel guilty for not having suffered as much as someone else; like we’ve been caught complaining about having an appendix removed to people who’ve had limbs amputated.
Excellent, Kim.
I’ve done nothing different than any parent. I love my children unconditionally and do what needs to be done.
But you said it so much better.