Archives for posts with tag: epilepsy

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

 

 

 

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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

S4300182_0089Grace turned 10 last week. We celebrated with a few presents and a cupcake for her to smoosh. There were Cheetos for her classes at school and a few lollipops for those who don’t eat Cheetos. We also sent cupcakes to the people at Target Pharmacy and to all three offices of our pediatrician. The people at the pharmacy and at the pediatrician’s do a ton for Grace – and that’s just the stuff we know about!   I’m sure that there is more that we don’t know. Despite the workload she creates they consistently have come through. They’ve been doing it for 10 years.

What Kevin and I have talked about in the leading up to Grace’s birthday has been less about her being 10 and more about how we have been dealing with epilepsy for 10 years.

Grace apart from epilepsy is a pretty cool kid. Although I can’t stack her up against a normal 10 year old, she’s her own version of 10. She definitely has things that she likes and that she doesn’t. She has personality. She has the ability to make noise. Her facial expressions are priceless. She is learning things. I take pride in her stubbornness. (She will not be messed with. She’s not a pushover.) There are people who love her. She knows what’s going on around her. She is genuine. She is funny. And when she looks me in the eye and smiles I’m pretty much just a puddle. We still snuggle each day, often times with her little hand resting on my cheek.

Just this morning she was in physical therapy doing something that’s really hard for her, at one point she took my hand for just a minute. Then she rubbed her face, a sure sign that she is a bit frustrated. After the rub she took my hand again and she began to navigate the obstacle. She is a very tough kid, which you may not see if you don’t really look.

Epilepsy has affected Grace in numerous ways. She’s never really able to be alone. There’s much that’s out of her control, her own body often times won’t do what she wants it to. There’s a randomness to epilepsy, she can be interrupted at any time. Her ability to speak for herself has been impacted. It takes her longer to learn things. It takes her longer to do things. It’s isolating. She’s completely dependent on others (and for Kevin and I the challenge of finding the right “others” is a constant concern). She never really was able to do “regular” kid things and won’t do “regular” adult things. Epilepsy makes her more vulnerable to judgements, to unkindness, and disrespect.

Epilepsy for us as her parents has introduced fear like we’ve never experienced. We too are affected by the randomness of epilepsy. There’s grief. Judgements we face.   A lack of freedom, we really can’t be spontaneous. Paperwork. Medication administration. There are never-ending big and small decisions to be made, often there is no right answer.   We are caregivers 24/7. Fear.   (I said that before but it bears repeating). Isolation.

Some days I try to picture Grace without epilepsy. I really can’t do it well or for very long. The reality of Grace being who she is (with epilepsy), and loving her right where she is at prevents me from going too far down that road.

Our girl is 10. A decade. My how far we have come!

Joy