Archives for posts with tag: ability

file-15If my life had a soundtrack I believe the song “Everything Changes” from Waitress would be heavily featured. The first part that truly speaks to me goes like this:

“Today’s a day like any other
But I’m changed I am a mother
Oh, in an instant
And who I was has disappeared
It doesn’t matter, now you’re here
So innocent”

And a few bars later these are the words:

“Two tiny hands, a pair of eyes
An unsung melody is mine for safekeeping
And I will guard it with my life
I’d hang the moon for it to shine on her sleeping
Starting here and starting now
I can feel the heart of how

Everything changes.”

As I look back I see there are no entries in Grace’s blog since her birthday. Frankly, it’s because Grace is changing and Kevin and I are trying to keep up. Her seizures have been messing with her quality of life more than we like. She’s been considered “malnourished” for a while; I hate that label it makes me feel like a horrible mom. As she gets taller she’s been deemed further malnourished. (Ugh) Her sodium levels are still low, and the doctor leading that arm of her care is discouraged he can’t diagnose her with something that explains it. Grace’s pediatrician and I had a good chuckle over that; Grace’s pediatrician long ago realized that Grace defies explanation and he is good with that. It’s one of the reasons we love him. Grace has had so much blood and urine tested for all kinds of levels it’s unbelievable. It took two IEP meetings to get her school plan figured out. One of the lenses of her glasses kept popping out. She’s outgrown the flexible soft glasses we’ve been buying her. And there are other things I can’t write about, but I believe I’ve given you a taste.

So, we’ve changed her medicine. We went up on one and we are adding one. The medicine we are adding is called Epidiolex. It’s derived from marijuana and FDA/DEA approved. It does not contain anything that would give Grace a high. There are only 10 pharmacies in the country that have access to it. Once we had the prescription we waited about six weeks for it to actually arrive. When it did we found out there were additional steps we needed to take to make sure we had all the documentation we need to travel with it. We have her on the lowest dose right now and will gradually be increasing her dose over the next month. I’m anxious to see what it will do for her and am daring to be hopeful that she could have fewer seizures, and if not fewer seizures then easier ones for her to bounce back from. As with any new med we second-guess ourselves about whether or not we are doing the right thing. We’ve known that a cannabinoid medication has been an option for Grace for a long time…but until now it had never been legal in the form we needed it to be. Cross your fingers.

We’ve changed her formula. No more pediatric blend for Grace. She’s now getting a formula for adults made primarily from whole foods, but we don’t have to do the mixing or blending. We now have to feed her every two hours when she’s awake so she can get the calories she needs. It’s intense. We are adjusting. The flexibility we had seems gone. It’s taken time to get her to the right amount and there have been multiple calls and emails between doctors, the dietician, and home care nursing all with us as the hub in the wheel between everyone to figure this all out. The amount of formula we get from the supplier to feed Grace in a month is exactly to the drop what we need to feed her. If we spill she misses calories…No pressure. Once we see how her sodium does, and if she plumps up a bit, they’d like us to introduce some blended real foods. That could be amazing.

Kevin, master of research, found glasses. He found a place willing to get a few pairs onsite for Grace to try. We paid for the transition lenses so sunlight isn’t so bright for her. We want her to hold her head up in the world- even outside! We are anxious to see how the glasses hold up to Grace’s abuse.

Through all of these changes, Grace just keeps going. She complains at times, but I have to think if I were her I’d be complaining more. One thing that has brought me comfort through all of this is watching her sleep. We watch her at night through a video-based baby monitor. She has slept the same way since she’s been little. She curls up on her right side. She tucks her hands under her right cheek and she sleeps. When you put her on her side in bed she usually just snuggles right in. I can easily imagine her little when I watch her sleep. She’s so beautiful and I don’t see ability or disability when she sleeps, I only see Grace.

And in those moments the song plays in my head. In an instant she was ours. In an instant we got a diagnosis. There were other instants she got more diagnoses. She is innocent. Her unsung melody could easily be lost to our fear or our complacency. We can’t hang the moon but we can try our best to do whatever we can for her. We recommit everyday to Grace because she is here.

Joy

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Grace turns thirteen tomorrow.  13.

Thirteen is supposed to be the start of teenager-dom.  It’s supposed to be about navigating friendships, big emotions, limits, learning, taking steps toward independence. We should be a year away from teaching her to drive. For us though 13 will be very much like 12, 11, 10 and the years that came before those. For better or for worse Grace is Grace, and while she’s always got something going on in many ways she is the same. She’s completely dependent on us. We feed her, get her dressed, brush her teeth, comb her hair, change her diaper, crush the medicine and put it through her g-tube in the hopes of fewer seizures and leveling off the chemistry of her body that’s just not quite “right”. Much like an infant or toddler, her schedule knows some flexibility but there are always consequences if we don’t follow the schedule. We don’t have the flexibility with Grace that should come with a 13-year-old.

In some ways, it’s a miracle that she is where she is. That she is doing as well as she is. What would raising Grace look like 40+ years ago when my parents were raising me? Or what would it have looked like if she were being raised when they were? I know the world has come a crazy long way. Accessibility has. Pink helmets have. Medicine has. Education has. Technology has. But sometimes it’s not enough to know how far we’ve come. I just want more. More normalization. More kindness. More accessibility. Less isolation. More flexibility. Less jumping through hoops.

Grace’s teacher recently let us know that at Grace’s IEP meeting in a few weeks it will be Grace’s first transition meeting. To be honest I haven’t studied up on that whole thing as much as I should have. I haven’t wanted to deal with her transition to what happens after high school. You are supposed to send your kids to college, not try to find a group home, or ways to keep your child in your own home (on purpose). I don’t think I’m ready for all of that yet. She’s this beautiful girl, as I write this she sits across the room from me in princess pajamas, playing with a toy meant for a 6-month-old. I can’t even imagine what our world looks like when she’s done with high school. It feels like we are preparing for her to just drop off the face of the earth- years before it’s scheduled to happen.   Of course, Kevin and I will not let her fall off the face of the earth. And as her IEP approaches, we’ll do the paperwork and ready ourselves for the first of many conversations. What choice do we have?

I wish I was happier to celebrate her birthday but I’m not. Graham’s been pushing. He can’t understand why we wouldn’t have a party. It feels cruel to explain to him that it’s because her birthday makes me sad. He shouldn’t have to process any of that – and I’m so grateful that he’s not sad.

So at this point, my conclusion is that I need to be sad when I need to be. I have a few hours marked out on my work calendar as vacation time to just be on my own this week. Other than that I’m getting ready for her birthday and blaming her lack of a celebration on the weather and that her birthday is on a school day. I will hang up the birthday banner. Wrap the presents. Sing. Take her picture like I do every year. Send light up balloons to her special ed room at school. Invite our friends to go bowling next weekend or come over to the house for a bit. And I will celebrate her attitude. Because of all things, teenagers are supposed to have; Grace has attitude. She can be so stubborn. So persistent. So fired up. Her spark inside continues to develop against all odds. I love her more than I can ever say. And I will continue to look for ways to have her and her “tude” shine.

Joy

86BA8EED-38DB-42A3-905C-85390F56C695When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves.   Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight.   Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways.   Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

Joy

 

 

 

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