Archives for posts with tag: epilepsy

img_8807Well, we are into 2019 and we haven’t yet written our summary of 2018. December flew by in a blur of Graham’s birthday, taekwondo, work, cub scouts, church, holidays and school. Our Christmas tree is still up for a few more days so I figure I’m good to write this.

2018 was the year:

  • We took a spring break vacation to St. Louis. The arch visitor center was under construction and I very much feared we might never find the entrance! And then when we did Graham decided there was no way he was going to go up that high. Luckily we were able to talk him into it.
  • Graham completed kindergarten and declared that he would have his very first summer vacation (because up until now he’d always had to be at daycare year round).
  • Grace completed fifth grade leaving behind a group of women in her special needs classroom who’d been there for her since kindergarten. She seems to have acclimated to middle school relatively easily thanks to spending some time there over the summer and her new special education teacher spending the time to get to know her and make sure everything was ready.
  • Kevin headed to Minnesota for an APO function and thoroughly enjoyed time with his friends and a road trip without any interruptions to stop for a bathroom or change out a movie. He listened to Bruce Springsteen all the way.
  • I invested a lot of time at work in a project that’s been happening off and on for 10ish years. I’m happy to report that the Iowa Department of Public Health is officially an accredited state health department. As the pressure on government mounts, I find myself in awe of the work that we all show up to do day after day.
  • Grace got a new wheelchair. It tilts and reclines. Functions we would never have guessed we would need. Grace picked the color “Sugarplum purple”. Of course, it sparkles and of her love of ballet seems to shine through in the name of her color choice.
  • We became the proud (but anxious) owners of a wheelchair van. The cost had always been a reason to wait…we were getting by. But Grace’s new wheelchair is much heavier than her last, and Grace hasn’t stopped growing! The wheelchair van has brought with it new challenges but also new opportunities.
  • We took the new wheelchair van and new topper (because there’s little room to pack in a wheelchair van to South Dakota). We saw the Badlands, Mount Rushmore, Crazy Horse, took a steam engine powered train ride to a small town where we panned for gold and took old time pictures, and ultimately made our way to Devil’s Tower in Wyoming because it was “so close.” It’s amazing to be able to get out in world with Grace. Not everything is handicapped accessible but we push the boundaries and I imagine as we grow more confident we’ll push them even more.
  • Kevin and I continue to serve on the Dance Without Limits Board. Our Dance Without Limits family continues to grow and the ballerinas and ballet engineer who have helped Grace over the years continue to amaze us.
  • Graham became a Tiger Cub. In his first few weeks he was in a parade and helped with a flag presentation at the Johnston High School homecoming game.   What a way to begin!
  • Grace stayed relatively healthy although there have been various concerns that have popped up through the year. Her sodium level is too low. Her urine grew some strange bacteria-twice! She had a pressure sore we couldn’t get to heal. Her seizures are changing…which is good according to the doctor (we are going with that for now).   She also outgrew the braces she wears on her legs in four months; usually braces last 9 – 12 months.
  • I have been listening to musicals on repeat…Hamilton, Waitress, and The Greatest Showman were the soundtrack of my year.
  • Kevin began collecting stickers of places we’ve been to stick on the topper as a badge of honor. His wanderlust finally getting a chance shine.

That seems like enough to get you a taste of our year. We look forward to the year ahead. Kevin has multiple summer vacations planned, we’ll have to pick one.   Graham is expressing interest not only in taekwondo but also in basketball, and he’s hinted about baseball. I’m hoping to talk him into show choir camp this summer. Grace will continue to dance and play baseball and I find myself already preparing for her 13th birthday at the end of the month. I can’t help but wonder what her version of teenager years will look like. I’m going to try and read more books and actually print out more of the pictures I take.

Thank you for looking in on our 2018. We wish you all a Happy 2019!

Joy

 

 

 

 

 

 

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S4300599Last week at this time Kevin, Grace, Graham, and I were just home from a family camp that serves special needs families. As part of the programming, the mom’s were all pulled together for some focused time.  In that time there was a comment made about the club of special needs motherhood.  Some of the women in that group joined voluntarily by adopting a child or children with special needs – others like me never anticipated being in the club; we were voluntold.

I’ve thought a lot about the club over the last week. I didn’t find it right away when Grace was diagnosed.  I caught glimpses of it when Grace was hospitalized on the epilepsy unit and we’d meet people and talk about epilepsy and seizures in this really frank way.  When Grace was little I felt much more held together by the professionals who assisted her through early access then I did by any kind of special needs community.  I think the intimacy of those professionals being in your home is part of that.

I’ve since discovered that when I wasn’t looking the club seems to have formed around me.  This is heartbreaking and such a relief.

I grieve a little when a new mom joins the club. It’s not like there is a membership card – but a new diagnosis that grants you entry. This is a not an easy journey. And even with the club, it can be lonely.

What I’ve learned from being in the club is that there is a lot of ability in disability. Ability looks different in different people – there is no standard.  Even though I knew some disabilities were invisible I didn’t think about it much.  I do now.  I’ve learned to never compare – the same thing in two kids can look very different.  I’ve learned to reserve my judgment – you just never know what someone else is dealing with.  I’ve learned the power of empathy.  I’m reminded of the importance of laughter.  I’ve learned how to live in a continuous cycle of grief.  I’ve learned that to encourage sometimes all you have to do is smile.  Sometimes you send a text.  Sometimes you bring a meal. Sometimes you just listen to someone explain why they are angry – and you don’t tell them they shouldn’t be.  I’ve learned that you don’t have to agree with someone on everything to be a support – it’s not an everything or nothing kind of thing. I’ve been reminded of the importance of celebrating what should be celebrated and not glossing over it because it doesn’t seem big enough to celebrate.  I’ve learned what it means to wait.  I’ve learned that what you say and how you say it really does count.  I’ve learned what it means to be vulnerable. I’ve learned about optimism even when it seems crazy to be optimistic.

I’ve learned that you need both. You need people outside and inside the “club” in life if at all possible.  In some ways, it’s harder to add the people outside the club to your life because you are in the club to begin with.

And to sum it up I’d say the hardest part of being in the club is that there is a certain amount of uncertainty you just have to be ok with.  If you aren’t its hard to enjoy the good stuff.

I’m grateful the club found me.  I can’t imagine doing it alone.  Sharing life is such an important part of living it.

Joy

 

 

 

GraceChangesEverythingI was up at 2:30 this morning worrying about what Kevin and I will do if insurance coverage for those with pre-existing conditions would again be denied. Or what we would do if it were to cost a zillion dollars to have bad insurance? I kid you not my anxiety around this does not go away. It just sits below the surface.

I thought about Jimmy Kimmel’s monologue about his infant son’s cardiac condition and treatment. I watched it last night holding Grace on my lap. I cried throughout. I feel for him – the grief, the horror, the vulnerability, the gratitude. The standing in a room full of people worried about your child and the utter helplessness of knowing you are the least informed person in the room. I find myself jealous of his ability to thank the nurses and doctors and therapists who were there so publicly. I would love to sing the praises of members of Grace’s team to a national audience. They are just as deserving. I started planning my speech in my head- because that’s what you do at 3am.

I thought about how Grace hasn’t complained about the first bras I’ve ever bought her. I researched so much to find something soft, comfortable, nothing to poke her, etc. etc.   They sent the bras beautifully wrapped, bright yellow ribbon tied on the outside. We opened them together. Grace chewed on the ribbon- not exactly what they had in mind I’m sure.   But I guess we had our mother/daughter moment! I wondered if her not complaining means I found the right ones?

I thought about confirmation Sunday at church just a few days ago and wondered what that will look like for Grace in 4 short years.

I wondered if I’m doing enough anywhere.

I thought about how on Saturday it had dawned on me that if Grace was a typical 11-year old I could have left her alone for a few minutes to run to the grocery store. I honestly don’t know if I’d ever thought about it before.

I wondered if we’d be able to keep Grace healthy so she can have surgery in 2 weeks. (Kevin was coughing beside me at that point). I wondered if this would be the last surgery she’d need for her mitrofanoff. I worried that my insurance through the state is only guaranteed to cover her through December, then who knows what will happen.

I went over the points of the dance recital meeting I went to last night for Graham in my head. I thought that maybe having a boy dancer is easier? I thought about how much I enjoy that he dances. I thought about how much I hate that we won’t be around for the class dance pictures.

I worried about work. I thought about grabbing my computer and sending emails right then and there. But, I didn’t want people to know I was up in the middle of the night worrying so I kept trying to go back to sleep.

I thought about how epilepsy touches everything that we do.

I thought about how we could plant a few vegetables in the back yard this summer and how that would be good for Graham.

I laughed at myself because I’ve been wishing for some time and space just to process things. Life. Grace. Graham. Work. Home. The pressure has been relentless. It shows no sign of letting up.   The 2:30 am wake up…perhaps that was the time and space I’d been hoping for.   But I’d come to no conclusions, and I didn’t really feel better, so maybe that wasn’t it.

What actually made me feel better was a sign in our kitchen I glanced early this morning. We’d picked it up at Hobby Lobby about a month or so ago. It states “Grace changes everything”. Our Grace wasn’t the original intent of the maker, and I’ll never find a “Graham changes everything” sign although it’s also true. The thing that made me smile was the unspoken words that Kevin and I exchanged when we saw the sign. We were getting it- no question. Frankly, I think it could have been horrid looking but that simple statement reflects our reality, reminds us that we are not in charge, and is just a truth we have to embrace. Fighting against it does us no good. We are left to do what we can, where we are, with love, fierceness, perseverance, and hope.

Joy

IMG_8075As the school year winds down families are invited to come to the school and walk the halls packed with artwork. I love walking through to see all the creativity. It’s the first time we really see what Grace has been up to in art because they package all her artwork up in a portfolio that she brings home at the end of the year.

As Grace has gotten older Art has become one of those subjects that I find myself getting touchy about – but I’m not really sure what to do about it or whether or not I’m overreacting.

As I walked the halls this year Grace’s artwork really blended in with the work of her classmates. I don’t think that anyone would look at her artwork and know that she is profoundly impacted by epilepsy and functions at much lower level than her peers.

Grace really loves artsy things. She likes to paint, will color on an iPad or my phone, holds onto a marker pretty well and moves it around. She loves texture and paper. She’s even able to cut a little bit with the help of special scissors and someone holding the paper for her.  One of her favorite places to walk around is Hobby Lobby.

I’ve seen the evidence that she’s in Art. There’s been paint on her clothes and her helmet.   There has been clay in her hair on occasion. I love when there is evidence that she’s been creative, I do not mind in the slightest cleaning it up.

What I do mind is not seeing her in her art.

But here’s the thing. This year third graders made portraits of themselves and dogs out of clay. Grace is not capable of either. These are lessons that the art teacher is teaching and they are out of Grace’s grasp. The art teacher can’t personalize each lesson to Grace, it the responsibility of Grace’s aide to do that to the best of her ability.  Art is also considered an ‘inclusion’ time for Grace because she is with her general ed class when they go to art. I’m sure she’s being given the opportunity to make choices as projects unfold. But ultimately does that really make the work hers?

Would I be happy walking the halls seeing her smooshed clay in the midst of everyone else’s dogs? Or a bunch of colored paper glued on a larger paper in the middle of everyone else’s portraits? I’d like to think so, but honestly I think that too would make me sad.

I’m not sure that this is something that can be resolved. It may be that this is part of the grief of special needs parenting.

Joy

 

 

IMG_6983

Notes on the perfectly normal genes, Weeble Santa keeping them in place.

We took Grace to Iowa City this fall to meet with the genetics group there. We last had her blood tested for any genetic explanation of her diagnosis when she was two. When she was two what I basically remember that they told us was that everything came back fine. There was no other explanation than to say the whole thing was a fluke. There was nothing about her genes to help us understand her. They also said that since it was all a fluke the chances of any other children we would have experiencing the same thing were probably very slim.

At her initial diagnosis the doctor told me, before he went on to tell us all that was wrong with her, that I should have miscarried her.   It felt like an accusation at the time, like my body had done something wrong. When in all actuality maybe what my body did in holding onto her was something really incredible.

The results of the most recent test came in last week. Kevin was still at work, I was home trying to make supper and watch our kids. We ended up on a three-way conference call. The notes I took are still sitting on my kitchen counter. (I’m not sure where the Santa weeble came from).

So, Grace has just had the best genetic testing available – it looks at all of the 2% of our genes that science can explain right now. And you know what they found? Nothing. Absolutely nothing. Grace came back normal. No findings.

They did however say that they are considering a diagnosis for her that we thought had been eliminated a long time ago, that they just couldn’t validate with science. We were left wrestling with what the right diagnosis for Grace is. We’ve decided to go with the epileptologist’s diagnosis, as he’s known her far longer and much better than the genetic doctor we saw for one afternoon. But we had the results sent to all the requisite doctors and we’ll ask everyone what they think as we make our Minnesota spring rounds of doctor appointments.

I’m ok with Grace being unexplainable. I think its part of her charm. It prevents putting her in any kind of box. She is just who she is, no explanation necessary.

Joy