Special Ops

It occurred to me today that I have been doing this parenting gig for 17 years this month.  Not just parenting, but parenting a child with a disability.  "Special needs" parenting.  I'm still not even sure what that means, outside of the concept that basic things are harder than they should be, everything for my kiddo costs more, and we still keep getting up every day to do it again.  We put our pants on the same way as everyone else (albeit some days they're inside out or backward; some days both).

But I remembered an article stating that parents of children with disabilities have stress hormone (cortisol) levels similar to combat soldiers.  Parents of children with autism have discussed the effects of constant vigilance on their psyche, such as one of my favorite blogs, a diary of a mom.  You know that panic feeling you'd get, when your child still had that "new baby smell," you'd see them sleeping and your heart would catch in your throat as you wondered, for that agonizing split-second, if they were still breathing?  My kid has a seizure disorder.  That happens to me. Every. Single. Day. 

As I stared at my sinkful of dirty dishes, I reflected briefly on my 17 years of hardcore-parent training.  We aren't the "enlisted" type of parents.  Hell, we aren't even "drafted."  We aren't quite sure how we got here, but we are the Special Ops parents.  And I'm going to wear that like a badge of honor whether it's an inside-out pants day or not.

We are the parents who you call when something weird happens with your kid.  We are the ones who you call when your child gets a diagnosis.  We know all the medications; we know most of the acronyms.  We are the ones you call when your kid qualifies for services.  We ask how you are doing before we ask what they qualified for.  We know how hard that day is, regardless of how much you wanted the help and validation.

We are the parents who you call when no one else is up to the job.  Whatever it is.  And hopefully, if it's a right-side-out pants day and I've had my caffeine, you'll get the support, love, and excess of information from me that you deserve.  Because we have a code.  No one gets left behind.  We may be terrible at getting out to gatherings, parties, and returning calls.  But when the chips are down, we'll be there for you.  With hugs, caffeine, and an arsenal of anecdotes and resources.  It's almost like we've been trained for this.  

In fact, we call each other.  Those moms in my circles who have had different training have their own specialties.  My BFF is my respiratory system/ADHD/allergy/504 "expert."  I'm the seizures/global developmental delays/nonverbal/genetics/pseudo-autism/IEP"expert."  My other dear friend from way back is the foster care system/preschool/tie-a-knot-in-the-end-of-your-rope and hold on "expert."  And it spreads out from there.  We call each other to ask questions for other people.  We may not know the answer, but "we know a guy."  If we can't find it, we'll find you someone who might know... because we've all been on the search for answers, and we're stronger together. 

The Surprise Marathon

When I am involved in support groups for parents of children with special needs, whether online or in person... (on the off chance I've conquered my social anxiety enough to actually attend), I have come to realize that I am an old hand at this.  Most of the parents are relatively new to the world of special needs and all that it entails.  I may not be the oldest parent in the room, but my daughter is older than most of these parents' children.  Because Katie is 13, I have been doing "this" for a long time now.  Here is what I have learned thus far:

Having a child with special needs is a lot like running a marathon when you've only prepared for a sprint.

Everyone understands that parenthood requires a level of commitment. But there is the general belief that even though these tiny people will require all of your strength and energy at first, they will eventually grow independent and competent over time.  So you train and prepare for a sprint.  You know that this is going to be tough but exhilarating.  You are ready.  You stand in your sneakers at the starting line, awash with hope and excitement at the feat you are about to undertake.  You think you can see the finish line off in the distance, and you're prepared to give it your all.  You plan and dream about what you will accomplish, hoping that your training and preparation will pay off and you will be swift and efficient.

As you start off running, you feel the wind on your face and see the smiles of those who've gathered to see you race.  They cheer you on and offer their support and encouragement.  Everything feels good, and this is what you were training for.

But as you run, something begins to feel off.  You can't make out the finish line where you thought it would be, and the other runners seem to have disappeared--long ahead of you.  There are a few people along the sides, still gathered to support you in your race but not as many as before.  You shake off the feeling and continue on your run, enjoying the beauty of the scenery and the rush of what you've accomplished.  Still the race continues with no finish line in sight.

You begin to become weary.  It's hard to say what starts to wear out first: the body or the mind.  But every time you begin to round a corner, you tell yourself "This is it.  It's almost over.  I can make it."  Until you see at the turn that it isn't the finish line at all.  Your heart hurts, your knees are wobbling, but you continue to put one foot in front of the other despite it all.  I can't speak to what it is like when your child has a formal diagnosis, or a "road map" as I call it.  I know that it doesn't mean this map provides the exact route of your particular marathon.  But having no map at all has been a lot like rounding many curves in the race only to find a new challenge or obstacle that had never even occurred to me as I prepared for a sprint.  Suddenly, the race includes hurdles--a feat you are certain you never signed up for, and for which you are grossly unprepared.

Still you do your best, jumping as you can, knocking over a few hurdles and looking back with slight regret.  You feel as if you should have known there was a possibility those hurdles would be there, and some insane part of your mind tells you that you should have been prepared and thus able to soar over them.  But you have to let it go.  If you are constantly looking back over those fallen hurdles, you will never be able to move forward.  After all, who can run effectively while constantly looking over their shoulder?

Sometimes all of the second guessing, the surprise hurdles, and the looking back will cause you to stumble.  Maybe even fall and scrape your knee.  Not necessarily fatal injuries, but injuries just the same.  Pain that makes every step more difficult.  You might have to stop at a first aid station to fix yourself up.  It's true, caregiving can take years off of your life.  And as a "forever parent," this is something that haunts my dreams.  I can't imagine not being there to care for Katie or make sure that her life is as beautiful and joyful as possible.  It terrifies me to my core.  Much more so than the mirage of a finish line could ever shake my resolve.  I've made up my mind to simply live forever.

Of course there are good things that happen during this race.  People pop up on the sidelines who make a difference in your life.  You meet wonderful people who are running a similar race, and you may run together for a time.  The scenery is beautiful and unexpected joy is found all along the way.  It's never easy, but that doesn't mean it's not worthwhile.  This world just isn't set up for people with disabilities.  It could be, and things are getting better slowly but surely.  But there are many hurdles and obstacles that don't even need to be part of the race.  Our culture needs to remove those obstacles and recognize that disability is just another part of human diversity.

I wish I had the answer to the surprise marathon experience.  But I am still running my race.  And honestly, I don't know if I will have the answer by the time it ends.  Perhaps if disability were less stigmatized and more accommodated in life, it would be less surprising when someone has a child with a disability.  As I still seek a diagnosis for Katie, I believe that a "road map" would help ease the shock of surprise obstacles a bit.  I also know it is entirely possible that her diagnosis will be so rare that there will still be no road map to go along with it.  But if we can't use her diagnosis as a road map, perhaps we can leave one for those who follow behind us in the race.  All I can do is find my own pace, try not to drag any fallen hurdles behind me, and keep running.

Nesting

I have been "nesting" for the past 4 months... collecting little bits of string and fluff to make my nest unique and comfortable for my little family, which is my world. By string and fluff of course Imean vintage embroidered pillowcases, tablecloths, and cute towels with colorful, retro owl designs on them. It's mostly a linen thing, for some reason. Probably because I already have most necessary household items and the only things to improve on are the decorative accoutrements. And no! For cryin' out loud, I am NOT pregnant!

The irony here, for those of you playing along at home, is that I have no nest. Not officially anyway. Katie and I are staying with my former in-laws. I wish there was another name for them, as "ex in-laws" seems disconnected and cold. I suppose "friends", "secondary parents", or "dear cherished wonderful supportive people who owe me nothing and give me more than I could ever dream"........ Maybe there's an acronym for that! So we are invading their space, which they swear they don't mind... And I hope that is always the case!

So it seems odd to me that I scour the second hand stores and craft fairs, etc, to find beautiful little things to make a home cozy, and then wash and fold them, and place them in the top of my closet. At this point, I would have to rely entirely on someone else for us to actually have our own home, though homeownership is my ultimate dream. I know there are programs, and I am working on improving my credit score and whatnot. But all of that is a long long long way away, and I am at the mercy of others for an indeterminate time.

I was thinking about this recent (and longest I've experienced) period of nesting I'm going through. I was thinking about my miscarriages, and the interesting pregnancy I had with Katie. It was actually interesting because it was uneventful, and nothing really came up as a true red flag... all the things that happened could have been coincidental or written off, but the combination of things and the passing of time, makes them seem more significant as pieces of the "Katie puzzle". She was less active in the womb than most babies (as I read a LOT during this time and was often concerned...), in fact she failed a nonstress test 4 days before birth because she didn't react to it! She had a 2 vessel umbilical cord, which often leads to kidney issues and other problems. (we had no problems, it was just weird that it was a 2 vessel cord instead of the customary 3)... Katie was 11 days late, and I am SURE of my dates because I stopped taking my birth control (bad idea), and was pregnant exactly 4 weeks later. Her fontanelle (soft spot) was huge, and covered most of the top of her head when she was born... when I geeked out, her pediatrician said, "Don't worry, it will close before she goes off to college." Funny, even at the time, but didn't make me feel like it was less significant of an oddness about Katie.

There are more things, and we discovered a lot as she grew and even now, things come up every 2 years or so that present new challenges--ie. seizures, bowel issues, etc. But what I find even more significant and puzzling, is that I have had 4 miscarriages since I gave birth to Katie. She is my one and only. 3 of which were with Katie's father, and the 4th with my current boyfriend. I was hoping, shame on me, that the miscarriages would end when I got a new partner, but alas that was not the case.

So with Katie's "issues", I wonder if her birth can be called a "successful" pregnancy as they say in the biz. I am not at all saying that she is not the love of my life, my best friend, and my darling child, but seriously, if there is a genetic component to her symptoms, then what is going on here? None of my failed pregnancies made it past 9 weeks, so I have very little data on what happened. And it didn't help that the first 3 were written off as coincidence/bad luck/whatever, so they weren't careful examined. Even the 4th wasn't really evaluated much, so I really don't know what to think.

I ponder these things sometimes at great lengths. I long for more children; I cherish my friends' children with all my heart and always wish they were mine until they misbehave... (the luxury of being an "auntie"!) I would love to help with foster care, and potentially adopt someday. Maybe that is why I am nesting. I am nearing 30 (I will be 29 this coming January), and the baby urge is intensifying greatly. So is the desire to have a home for my little family, where it can grow into a slightly bigger family...... and maybe even welcome in some children who otherwise wouldn't know the hugs, warm cozy blankets, and super special secret recipe chocolate chip cookies that I have to offer.

**BTW, that is not my house at the top of the page... but a house for sale that I adore, but of course couldn't ever afford!!!**

Apple Festival Fun

Today we went out and about for the Apple Festival going on this month.

Weekends at the Bluff are a crazy, colorful, tasty blend of kids and old folks out to enjoy the local bounty.

We picked some apples at our favorite Mom & Pop orchard...

Miss Katie being silly in the orchard

We started to go to the Grange Hall for a look at all the crafty holiday decorations.... but there was a gaggle of geriatrics in the doorway who couldn't decide if they were coming in or going out, and I decided I didn't have the patience to wait to see. (nothing against their age, I do have issues with people who are oblivious to those around them but since they were elderly I didn't feel it was appropriate to get on their case...

so we just skipped that venue)

Katie got a big kick out of observing the petting zoo!

She loves watching the little pony, pigmy goats, and calf grazing and ignoring the people around them.

I would have liked to take her in, but she's not much for actually touching animals

except on rare days when she pets our kitty....

Beautiful empire apples waiting to be picked...

We were so worn out from the beautiful weather, fun views, and orchard hiking!

Little Miss Doots took a looonnnnng nap when we got home! (so did Mama...shhhh!)

~

We got a ton of apples, fresh plums, squash, and apple cider fresh from the orchard..... What a wonderful day. I love this time of year! Can't wait to break out all of my apple recipes and see what I feel inspired to create!

Unconditional Love... and Inside Jokes

I was thinking about my life with Katie, the other day, as I often do.... As a mother, I know the unconditional love for a child. It is more intense than I ever imagined. And though Katie's situation is sometimes disheartening, I still know for certain that there is nothing that would make me forsake her.

There is absolutely nothing she could ever say or do that would make me love her less. Of course, I also realize the simple flaw in this statement--the fact that she cannot say anything at all, and her motives are always pure because of her disability. Sure we have our "disagreements", she wants something which she can't articulate and I get pinched and pulverized for my ignorance or noncompliance with her desires. But I suppose in the rebellion-aspect, I have little to worry about from her.

But I do love her so intensely that it scares me. I tend toward anxiety as it is, and the uncertainty of Katie's health and medical issues is an easy instigator for my anxiety-prone mind. I worry about her future, her health, the random grand mal seizures which scare the life out of me and make her appear nearly gone to this world for several minutes. I fear that I will somehow fail her, and an accident will occur that I will be unable to forgive myself for. I can't leave her alone for more than a minute as she is nimble enough when she wants to be, and her seizures rob her of her balance.

Most of the time, though, I can bask in her simple joys. We have what I like to call "inside jokes." She will look at me, and I will catch the twinkle in her eye, and we both break out laughing. Eye contact has always been difficult for Katie, for reasons I cannot explain to my own satisfaction. Possibly cortical visual impairment, though I couldn't get this looked into by the "professionals" at her school. They felt her vision was good enough and if CVI was a factor, it was nearly resolved. That's cool. Don't listen to the person who spends all of her waking time with Katie. Rely on your 30 minute "assessment." **meh** But I digress.

The way she looks into my eyes and the giggle fits we get into.... that is the closest to pure joy I have ever been in my life. It literally takes my breath away. Those big blue eyes, that mischievious look..... Nothin' better. So I realize I have it easy when I think hard about it. Katie will not disown me, nor I her. There won't be battles over clothing or slamming doors and hateful words.... But it is a bittersweet victory as there won't be "I love you, Mom" or "Thank you for helping me. You always know how to make me feel better." I just have to see that gleam in her eye and know that she means it.

Compassion

I wonder how many lives will be touched by Katie. We are swarmed when I pick her up from school by sweet little girls who want to say "hi" to Katie. The children in our complex are fascinated by Katie. Shayne's son is her favorite "buddy" and is so sweet and tender with her.

People whose lives have been touched by someone with a disability show themselves to be so much more thoughtful, compassionate, and kind than those whose lives are unhindered by the imperfection of life. I believe that people like Katie are some of the most enlightened souls returning to earth in a challenging body to teach us more than we could ever imagine.

I worry more about people who do not get the opportunity to know and love someone with a disability. Things are different today than they were even when I was a child. Mainstreaming in schools and inclusion are much more practiced today than ever before. When I was in elementary school, the special needs children were in a separate wing and I rarely if ever saw any of them. They were a mystery. Even scary or intimidating in their differentness.

But now we have children who visit Katie and read to her, local high school kids who come and spend time with her class... So many more shows address children about people who are differently abled. I find it relatively easy to talk to the other kids about Katie's differences. Maybe even easier than with adults. They have many questions, but the answers can be simpler than when speaking with adults. As one little neighbor girl so easily summed it up, "Some people talk and some people don't." 'Nuf said.

I hope that Katie continues to be surrounded by loving, compassionate people who get to know her. Who will look past the indelicacies of life with a disability and will see the beauty and simplicity within. I hope that Shayne's son will grow up to be a gentle and caring man because of his time with Katie.

I wish everyone could have that chance.

Amazing...

Katers, Katie Bugs, Buggy Toots, Buggy Boots, Punkin Poots, Missy Pea Pants, Toots,

Moots, Moodies, Bossy Boots, Punkin Head, Peasy, Matoots, Skwiddo, Boogas,

Buggaboos, Katertoots, Lovebug, Sweetpea, Moochie, Muchas Muchas, Blue Eyes,

Gorgeous, Lalas, Smoochie, Nanoots, Noots, Doots, My Baby, Scooter, Mugwump, Goobahs, Scubah Doobah, Lazy Daisy, Hoobie Scoobie, Goofy Toots, Lovie Buggie, Honey Bear....

Sometimes I think it's amazing that Katie knows her name... I come from a family who gives everyone and everything nicknames. Silly and cute, nonsensical... I must have a million variations. Still she knows me, and knows my voice. When I walk into a room and start to speak, she turns to me and smiles. She completes me.