Archives for posts with tag: encouragement

IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.

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

 

 

 

grace and grahamGrace and Graham continue to grow in their relationship. I haven’t written about it for awhile- and it’s important. Here’s my current take on it.

Let’s start with the rough part. I’ve been getting frustrated because Graham has been making a big deal about Grace’s drool. He doesn’t want it anywhere near him. It’s frustrating because I struggle with knowing the best way to help him with it. Part of me gets this – we don’t call it “goo” without a good reason. The other part of me long ago accepted that there will be goo in our life. We give her medication to lessen it actually but for it to go away probably isn’t an achievable goal. He doesn’t have that perspective of course- he’s four.

The goo is a real challenge. When I’m with her and other kids I’m constantly making sure that she doesn’t goo them. I was reminded not too long ago about a time when I failed to get the job done. Grace and her princess friend from kindergarten were in the back seat of our van. We’d taken them to Wesley Woods to ride horses together. It was really wonderful. Grace’s princess friend had a jacket on. Grace had been chewing on her hand and reached out to touch her friend. When I said “Oh I’m sorry she got you wet” the little girl looked at me and said so matter-of-factly “That’s ok, it will wash.” That little girl had touched my heart several times that year – and this moment just got added to the list.   She did move a little to get out of Grace’s range but not so much that she was totally detached from her.

Graham says “she’s touching me”, “why won’t Grace leave me alone”, or picks something up and says “eww, Grace had this, dry it off .”

The first two feel like normal sibling statements – the last one, that’s about Grace.

One day this spring he wanted a megaphone to take to baseball. Kevin fashioned him one out of paper. I was Grace’s buddy that day at baseball. As we came up to hit the little boy’s voice that I love came yelling through that paper megaphone. “You can do it Gracie” and I missed the rest of the encouragement because what I really wanted to do was sit down and cry but what I had to do was hit the ball and get Grace around the bases.

When we bring Grace with us to pick him up from daycare we are typically surrounded by kids. Often with questions like “Why can’t she talk?” “Is she a baby?” and I see him take all our answers in. I hear him repeat them to others.

At our last visit with Grace’s immunologist he asked us about Graham. He reminded us that Graham too needs our attention, and that the older Graham gets the more he will understand about how our family is different. I teared up as we talked about it. I read a book about siblings of kids with special needs while I was pregnant with Graham. The take away I got was that we were putting Graham in a pretty tough position. He’s the youngest, he’ll have no siblings to commiserate with, and we’ll make only child and first child mistakes with him – without him having the benefit of being only or first. It made me worry. I think of it often. I want him to love our family when he looks back. We are taking it day by day. I can’t get too far ahead of where we are.

As for where we are he pushes her in her wheelchair. He asks to go on a bike ride with her. He wants to go swinging outside with her. He introduces her to others – sometimes yelling out his own and her introduction at people as they are walking by our house.

He’s quick at a restaurant to move a chair away from a table so there will be a place for her wheelchair. He offers to share his Cheetos with her. He doesn’t share them with his dad or me.

He’s quick to accept a piece of candy offered to her on her behalf. 🙂

He’s getting strong enough to open doors so that we can push her through them.

When we were at a family camp last week he quickly adopted Grace’s buddy as his own and when the three of them were together he would often attend to Grace bringing her toys that she likes so she could play too.

And if imitation is really the sincerest form of flattery – his participation in a dance recital this weekend – because he wanted to dance like his sister – speaks volumes.

Joy