Meet My Village

Having a child with a disability means dealing with chronic health issues. Most of the time we’re cruising along pacing ourselves just fine, sometimes even forgetting that we’re on a long arduous journey.

And sometimes it feels like there’s always something. If it’s not a new set of seizures, then it’s a surgery. If it’s not battling insurance for a bed then it’s trying out a new medication.

I’m not doing this alone. Not by a long shot. I often try and because this is such an ongoing battle, I can’t stand asking for help or feeling like a drain on others.

Aidan was in the hospital this week just for two days. It was planned and short. But still, each hospital visit brings every other hospital visit to the table. The ones that lasted too long, or gave bad news, or were just frustrating.

By all accounts this visit was easy peasy.

And still, my village showed up en force.

There was the friend who showed up with a ridiculously generous goodie bag with good food and trashy magazines. I was in a medical meeting when she arrived so instead of having a nice visit, she took Aidan driving in his wheelchair. Because I trust her so much I sent her off without instructions. There’s a story there about getting stuck but in the end I got my kid back, she helped out, and I was able to listen to the medical team.

There was the aunt and cousins who showed up with dinner. The one I loved for dropping the F-bomb without realizing she was in a children’s hospital. Oh, to be such a foreigner to these places. They brought family gossip and life talk to the teeny tiny child sized table where we shared a meal.

There was the friend who met me at the door when I came home spent and exhausted and just done. She fed Aidan and entertained him. Then when she put him down for a nap she joined me in the kitchen to chop and cook and measure for my boy. There was laughter there too because sometimes this medical life is ridiculous (and just maybe I peed my pants a little too).

Then there was my friend who is The Fixer, my personal Olivia Pope. The one who gets called in a crisis, handles it efficiently, and then discards any evidence. She was waiting in the wings, always prepared.

And always there is Liam and Garreth. They FaceTimed in each evening and sang Aidan his special Goodnight song and made silly faces.

I’m home and tired. I started the day triumphant and ready for battle and ended it with a beer in the tub having tapped out of parenthood.

It’s a new chapter of this chronic life and I am not alone.

 

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And Then I Talked About Pissing Contests in Church

I went to speak to our Mothers of Preschoolers (MOPS) group at my church a few weeks ago. Here were these sleep deprived, spit up on moms with newborns and energetic tikes wanting to know how to be part of my world.

I got to share how sometimes my journey looks just like theirs (we all celebrate our children and get tired and work hard to see them progress) and sometimes it’s very different (Disability World has more doctors and meds and bills and fear). They wanted to know how to help me; how to teach their children to talk to Aidan; and they were eager to know how to not offend us.

I told them the truth. I’m one person and I’m not easily offended and sometimes I feel so dang left out that I don’t even mind if they stumble with awkward words. “What’s wrong with him?” “What’s his diagnosis?” “Why is he like that?” Others may take offense. “Nothing’s wrong with him.” “None of your business.” “I have no idea.” I welcome the conversation.

The truth is that there are no real magic words. My best suggestion was to ask exactly what you would ask another mom. “What’s his name?” “How old is he?” “He really knows what he’s doing with that chair.” All of these comments tell me that you see my child. Of course you see his disability; how can you not? But if you make an effort to really see him then I feel comfortable telling you more.

And here’s one more oh so important thing we have in common; these tired mamas want to be seen as well. One brave woman raised her hand and said that she has a friend who has a child with a disability. She feels ridiculous sharing her sleepless nights and sibling rivalry knowing that her friend deals with numerous doctors appointments and a strict medicine regiment. She may feel a little bit less than compared to this other mama.

In one moment my heart broke and in the next I got all fiery because really your life is hard because it’s yours and your pain is painful because it’s yours and your mess is messy because it’s yours.

“Motherhood is not a pissing contest,” I told these lovely church ladies who know about mess and doubt and imperfection and working hard and feeling so alone but never quite having alone time.

I’m so grateful that these women want to be part of my life, but I too want to be part of theirs. If I don’t get to hear about their teething babies and exploding diapers and broken strollers than I’m left out again.

Can we please just do this beautiful mess of motherhood together?

 

Undiagnosed Children’s Day 2013

Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability.

I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough.

Nope. Nothing… at least nothing with a name. He has plenty of medical issues but no one knows why.

Let’s face it, none of us like the not knowing. I spent the first many years of Aidan’s life in agony wanting an answer, wanting a cure, wanting to know what his future would look like, wanting an in with the moms of kids with DS or CP or Autism. We want to understand and we want to belong. Over time that desire has faded and given way to the day to day tasks of daily living, which has its own complexity. I’m not as anxious about having a name for Aidan’s disability.

So why does Undiagnosed Children’s Day matter?

First, some of us lose services because our kids lack a diagnosis. This is incredibly important to understand because we play a ridiculously stressful name game just to get help. No diagnosis can be a deal breaker which can be a sanity breaker too.

Second, sometimes there is a weird stigma attached to not having a diagnosis, as if we as parents haven’t done enough. Every family has to make their own decision about what they’re willing to try to help their child. I try to balance the quality of our life as a family with what I can do for Aidan and sometimes that means I say no to seeking out a far away doctor or signing up for more therapy.

Third, sharing our stories brings attention to the issue and attention sometimes brings research dollars. The field of genetics is changing at a rapid rate. Someday there may be a name for what Aidan has and some baby in a NICU somewhere may not lose precious developmental time getting help.

But wait, you just wore purple for us on Purple Day because Aidan has Epilepsy. Isn’t that a diagnosis?

Yes, it most certainly is and Aidan does have seizures. That is one piece of his medical puzzle. There are many pieces of his medical puzzle (low muscle tone, motor impairment, cognitive delays, orthopedic issues) but there is no big picture diagnosis that connects them.

But you’ve just hooked up with all of these fabulous CP bloggers for siblings week and it sure sounds like Aidan has CP. What’s up with that?

Um, well, that’s a tough one.  Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, childbirth or after birth up to about age three.  Yes, that sounds a lot like Aidan and he definitely has neurological and motor control issues. However, the doctors did not believe that was his diagnosis so the search continues.

Since starting Undiagnosed Children’s Day three years ago, I have been comforted in knowing I’m not alone. Thank-you to SWAN UK and SWAN USA for using this day to get people talking. Please wear pink or blue on Saturday the 13th in support of our children and grab one of the talking points from above to share with others. Link up below and share your story.

This is why it matters to me:

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