Hard, hard, hard, hard, hard

My oldest daughter will be seventeen in two months. She is a junior in high school. As such, you can imagine that this is an important year for her. On Facebook and in off-chance meetings at the grocery store, I learn from old friends and acquaintances, people I knew from my girl's preschool or elementary school days, that this is a time pre-college drama. SATs, AP classes, GPAs, extra-curriculars.They are all so important. They are new suns around which families learn to revolve.

But not us. My daughter has multiple disabilities. If you know this already, forgive me while I bring new readers into the loop. She has epilepsy, Asperger's, learning disabilities, an anxiety disorder, and chronic migraines. She is socially more like a fourth or fifth grader, as demonstrated by the fact that she spent today watching old Peanuts cartoons.

At different times, I will tell you that each of these is the worst, the most debilitating, the most worrisome, the most scary. Now, as you may know, I say that about the migraines, which are constant, and just getting worse.

I do not tell you this because I want you to feel sorry for her or for me. I tell you this, because I want you to know that having a disabled child is really, really, really, really hard, and among the many hard things is watching neurotypical kids zoom forward when my kid has missed her first week of school because she has become incapacitated and cannot even walk a straight line without support.

I avoid a lot of people. There is a reason why many of my now dearest friends do not have children. It means we don't have to talk about kids. Parents with neurotypical teens say things like this to me:

1. We feel so bad for X. She was wait-listed at Yale, and she did everything right!
2. We are so worried about Y. She is so tall, and it makes her so self conscious.
3. If Z doesn't get his act together, he will have to go to a state school! He'll just have to pay the consequences.
4. We're worried that, since our kids have trust funds, they won't know the value of hard work.
5. She's only getting Bs.
6. It's so great when they can drive.

I tell my children that people's problems may seem small to you, but they feel very real to them. And that is true.

At a recent visit to the doctor's, I said to my girl, "I hate to you see you suffer."

She said, "This isn't suffering. AIDs orphans in Africa, the homeless. They suffer."

It's like she's ten, and then, all of the sudden, it's like she's lived forever.

I just had to get this off my chest. I'll be funnier next time. If I've brought you down, go here.


Daisy said...

No need to be "funny", or anything but yourself Margaret...not among friends.
Love you - and senior daughter/goddess.

Barbara and Daisy

Rois said...

Oh Mama,you made my heart ache.As you already know I am here,we are soul sister's with children who live with pain.
I hear you from deep within my mother heart.I get it.Boy, do I get every single thing you wrote.

Much love to you and yours.May today be a good day and tomorrow too.

Bec said...

I appreciate your honesty and perspective here - I think too often we all put on our "everything's great" faces when things aren't great and are hard. Prayers for your daughter - she's blessed to have a wonderful mom!

Petrea Burchard said...

I've been thinking of you all day.

I think highly of your daughters, both of them. Your youngest and I have anime in common, and I have an affinity for your eldest--not sure why, but we've always gotten along well. She seems older to me than a fifth grader. Maybe that's because I don't have kids and don't know any better. I can see that she's different than other kids her age, but that line about the homeless and AIDS orphans doesn't surprise me. She's aware.

I wish I had something for her. Some wisdom, some cure. But I especially wish I had something for you, Margaret. You could sure use a break. Thank goodness you're an artist.

Jean Spitzer said...

Margret, you have said this painful thing so well. I admire that.

I wish the best for you both.

Deb @ Paper Turtle said...

My dear Margaret ~ I've known a bit about this from our previous conversations, but I'll admit to not knowing that your girl was facing such challenges. Being {almost} seventeen is challenging enough, and then to have those types of hurdles to overcome... I'm am very impressed with her outlook and perspective on suffering. As the mother of an "old soul" I totally get that, and I understand those moments of insight and the deep-down-mom-pride as a result.

Sending you big hugs and hopes for fewer challenges for your sweet girl! xo

Adele said...

Hi Margaret, Honestly, you couldn't have expressed this any more perfectly. I work with kids who deal with challenges similar to those your daughter faces, and I often marvel at the problems that the rest of the world (including yours truly) can be consumed with. It just takes a visit with a girl like yours to know that we could all use a bit of perspective. I wish you all the best with everything that you all are going through. I am perpetually in awe of families like yours.

Desiree said...

Without pitying your daughter I think I can feel compassion for you and your family. As well as admire your and your daughter's resilience.

Pasadena Adjacent said...

I have a lot to say on the subject but it feels wrong having to say in on a blog. I will add that your daughter landed on a soft spot. Your a tiger mom of the other sort, the best sort - you have compassion. It was with you before you ever gave birth. It's in your daughter now.

Tony Van Helsing said...

Your blog, your rules Margaret. None of us have to be glib and humourous all the time. This is an insight into your life and I appreciate it. Just for the record. I don't have kids.

Susan Campisi said...

Your daughter inherited your wisdom, Margaret. Was she the one sitting at the entrance of SPACE when I arrived for your reading? She has a real sparkle to her spirit.

Check out this dog video for a good chuckle: http://www.youtube.com/watch?v=kui_29j1odo

Shell Sherree said...

I can't begin to imagine how it feels, Margaret. But your eldest has great taste in cartoons. It's good to get things off your chest. I'm glad you did.

Ms M said...

Well written, well stated. I admire your strength and honesty in writing about something so difficult. Blessings to you and your family.

L.W.Roth, said...

There's nothing funny about what you and your daughter are going through, yet you find the sun. You are a strong woman. You are invited to rant as often as you need. It helps. Screaming is good too, (have you thought about a video). It strengthens not only the lungs, but reinforces determination and fortitude. My prayers are with you both.

Addey said...

As a mom, I can relate to the feelings when something hurts your child.

As a human, I can feel empathy for your struggles.

But, I haven't walked your path, so all I can do is cheer you on from the sidelines and remind you that there are many, many out in the world who do care and want the best for you and your daughters. We're not all on the same path, but we can share this journey a while together.

altadenahiker said...

Oh, now you made me want to add to the list of brag complaints. And people think they're being so subtle, too, when they whine about being too thin, too rich, too popular, too successful. Or having kids who are too brilliant for their own good.

And when it comes to Scout, even you, Margaret, have been known to indulge.

Bellis said...

Margaret, it's so hard for your daughter, and for you. I had a friend whose son's birth was messed up and gave him cerebral palsy. It was very hard during his teenage years, especially at a normal school. He did all right in the end though, and has a job as a plant breeder that he enjoys. I hope your daughter does all right too. She's got your strength and care behind her.

TheChieftess said...

I worked with severely handicapped kids at a private special education school in Grand Terrace... I know exactly how hard it must be for you. My heart goes out to you Margaret. I'm sure that your sense of humor and writing has gotten you through some tough moments...
you are a special person and I'm sure, a very special mom...

Alison said...

Having worked with special needs children, I get exactly where you're coming from with other people's complaints...some people need to look at the big picture..and it sounds as though your daughter knows exactly how to do that. You must be so proud of her outlook on life..you are doing a great job my friend!
Alison xx