Archives for posts with tag: Help

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

 

 

 

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IMG_9293Grace has had a better day.  All the numbers that we are watching keep going down or have stabilized where they are supposed to be.    We still lack our normal level of seizure control, but we continue to try to get as much control as possible with the medications we have to work with.

Tomorrow is a big day.  Tomorrow Grace will have a surgery to place a port under her right shoulder blade.  We’ll be able to use that port to get her better nutrition by IV.    We need the nutrition to advance the healing.  As a bonus, it will also come in handy in the future as we will be able to use it for her monthly infusions without her having to be poked.

It’s late as I’m writing this because Grace has been up and busy.  Isn’t that cool?

Not only am I grateful today for Grace’s continued progress but also for the kindness we have received as Grace (and the rest of us) have been going through this.   There have been people who have come forward to do things for Grace, Graham, Kevin, and myself.  People who have abandoned their own lives for a bit to join in our journey and take care of us.

I recently got a t-shirt that says “Hustle Kindness”.  The shirt and the hustle all brought about by an organization called Peach’s Neet Feet.  It’s amazing what happens when you put on the shirt.  First – you have to be patient and kind because you are putting it out there that you are about hustling kindness.  Second – you slow down and look for ways to be a bit kinder because again you are literally putting it out there that acting with kindness is what you are about.  And finally people tend to look at you and smile when you wear the shirt – and you have to wonder if they are thinking about the kindness in their own lives.

It’s a bit uncomfortable at times to be on the side of being hustled vs. doing the hustling.  But I am so grateful for the acts of kindness coming our way.   The toll of slowly having Grace become better is still a toll.  Kindness – whether big or small goes a long way in providing strength and courage to keep going.  We are so grateful for the acts of kindness that have been bestowed on us these last few days.

Good night everyone.  We will let you know how it goes tomorrow.

Joy

I’m dreading the next six weeks with Grace. There are four specialty appointments. One of them with someone brand new. One of them may ask us to consider signing Grace up for surgery. There’s school conferences, which were awkward in the fall. There’s an IEP meeting. There’s a new communication device to trial.

I’m in San Antonio for a week of it.

There’s a ballet in there.

Easter will happen.

We’ll need to sign up for baseball.

It’s a lot. Some of it will be fun some of it will not.

As I think about this I keep remembering a blog I read awhile back by a special needs mom. Unfortunately I can’t find it now to give her credit. In her entry she focused on the helpers in her child’s life – her school aide in particular. She quoted Mr. Rogers. He said “When I was a boy and I would see scary things in the news, my mother would say to me, Look for the helpers. You will always find people who are helping.”

I know that some of my dread about the upcoming weeks is based in fear.

I was at dance with Grace today and I got to thinking some of my favorite helpers have come from dance.

Today I acted in Jill’s place. Serving as Grace’s balance – and providing her cues to shift her weight so that India and Alex could move her arms and legs. Jill has been helping Grace since she started ballet. It’s not an easy job. There are turns and jumps, and tapping backwards across the floor. Grace is stronger than she may appear and can resist and sometimes does resist these movements where she lacks control. Grace trusts Jill though and with her support has been able to experience dancing. And it’s not just that Jill helps when Grace is dancing. She helps get her inside, helps get her pants on if it’s cold outside, chases after Graham as he is ready to leave faster than Grace, and even loaned me her phone so I could take a few pictures of Grace dancing when I left mine at home.

Jacque and Chloe visited us one afternoon when they were both home on Christmas break a few months ago. They’d danced with Grace for three and a half years.   When they arrived I was in Graham’s room trying to wake him up from a nap. When I came out of his room they were all settled in with Grace – all three of them on our very hard floor – because that was where Grace was.

Hannah started dancing with Grace last spring. She quickly picked up on Grace and became the beginning of our DWOL generation 2 Team Grace. Hannah had a gentle way about her that Grace responded to. The first few weeks of dance last fall Hannah was the only member of Team Grace who’d had any experience with her. And the thing is, she totally handled it. She had Grace and they did their thing and there was no hesitation. Grace was able to shift right into dance mode because Hannah was there. Grace didn’t test Hannah – she was a known entity.

India joined us in the fall. She quickly learned to put Grace’s bib in her mouth and doesn’t shy away from goo. She had no fear about moving Grace’s arms and legs and putting her in the position to dance. She is consistent with Grace. Grace has learned that India is a force and I love that about India. India also has just embraced Grace where she is at in a way that’s really incredible.

Newest to the team is Alex. We’ve only been dancing with her a few weeks. She smiles at Grace and encourages her. Just today she noticed Grace helping her move her leg and said “Grace you’re doing it!” as she helped her get across the floor. She gave Grace credit for what she did when she herself was working very hard to allow Grace to do that part.

There are many other helpers at dance that I should write about too, but in an effort to keep this short-ish I’d like to mention one other helper- a non-dancer. (Ok non-ballet dancer…but a very good Mickey Mouse Clubhouse hot dog dancer) Graham.  Two weeks ago the four of us went to Planet Sub, one of our favorite lunch spots. Kevin, Grace, and I were all at counter ordering. While we were doing that Graham grabbed three bags of chips (one for him, one for me, and one for Kevin), claimed a table, and moved a chair out of the way so there’d be room for Grace’s wheelchair. He did it all without prompting. I was astounded. He sees more than I know.

The next six weeks will pass. There will be helpers to get us through. I’ll look for them.

Joy

Eight Today!

When I saw the pediatrician a few weeks ago with Graham he commented that Grace’s birthday was coming up.  “She’s going to be 8” I said, “can you believe it?”  I went on to say “It feels like so long ago that this all started.”  He replied, “But sometimes it feels like not so long ago at all.”

It does seem sometimes that Grace is just ancient – wise, stubborn, unafraid to tell it like it is.

And when I think about the army of people it’s taken to get her here, surely she has to be older than 8!  There are days it’s lonely being Grace’s mom – and sometimes on those days I picture them- Grace’s army.  Doctors (so many doctors), surgeons, nurses (home, school, doctor’s offices, hospitals), receptionists (that know me just by the sound of my “hello”), aides, lab workers, schedulers, x-ray technicians, EEG techs, dietitians, physical therapists, occupational therapists, speech therapists, teachers, bus drivers, orthotist, case managers, social workers, volunteers in the church nursery, a basset hound, a few horses, Wesley Woods, a hair stylist, pharmacists, ballerinas, baseball volunteers, wish granters, pink helmet makers, medical supply providers, family, friends, neighbors, co-workers, her classmates, the man and his team who built our house.  I’m sure there are people that I am forgetting.

I’m grateful for them all – even the ones who caused me stress at the time.  Together we are growing an amazing girl.

In her eighth year we are not anticipating any major medical needs.  (Sigh of relief).

We plan to work on communication.  15 words in particular.  Mom, Dad, go, more, done, my, up, in, on, play, get, off, want, down, and turn.

We are going to keep working on walking and getting up and down from the floor independently or with minimum assistance.

We are going to swing outside.

We are going to take her on bike rides.

She’ll dance, play ball, and ride horses.

She’ll be at school.

We will try and find new things to try.

We will have good days and bad.

Maybe a few people will be added to the army.

As of 10:16 tonight she’ll officially be 8.  (Deep breath)  (Sigh)  Our little girl is growing up.

Joy

Graham doing his part to help Grace dance

“Gracie walk” he said as he took her hand- and they took a few steps together before she started to trip.  Graham did this.  Graham, our not quite two, continually amazing us, little boy.  I just loved them both so much in that brief moment…it was kind of a normal moment (if you don’t think about it too hard 🙂 )

It’s not the first time he’s included Grace, or tried to help her.  He often tries to share his snacks with her.  He tries to get her to play catch with us, saying “Gracie ball” and tossing it her way.  Often she has no idea it’s coming.   It doesn’t stop him from throwing it to her again.

In the church nursery before we are even there to pick them up Graham gathers up his coat, her coat, and the diaper bag.  He’s not leaving without her.

When we first got the swing set this summer there was a night that he was insisting we go outside and swing.  Kevin wasn’t home yet – it was just the three of us.  I put Grace on a blanket in the yard to watch and went to buckle him in.  “No Gracie” he kept saying and refused to be buckled in.  I put him down and he ran to Grace in the grass, pulled her by the arm and said “Gracie swing”.  I tried to explain to him that they couldn’t both swing, (Grace didn’t have her own swing yet.  She could only swing with me on the porch swing that’s also a part of the swing set.  I couldn’t leave her on the porch swing alone to push him- there’s no way to make sure she’d stay there…not that he could understand any of that.)   He just kept pulling on her arm repeating “Gracie swing”.  Luckily Kevin arrived home, everyone could swing, and Graham was happy.

He claps for her at baseball.

He pounds on the window at dance yelling “Gracie, Gracie” trying to get her attention.

He likes to help when she’s getting meds in the morning.  She’s sleeping and he’s a happy (and loud) morning person.  “Shh, shh” we say and put our fingers to our lips as we go in the room- and then he sees her and says out loud “Gracie!”

It’s a treat to sit in her wheelchair.

You should see it when he hugs her good night – so precious!  He lays his cheek on top of her helmet, his little arm on her back.

We have to be careful though, one night Grace had a seizure (a pretty hard one) and Kevin and I both jumped up to get to her.  Graham began to cry, his little face just fell, “Gracie” he cried…and in that one word were so many questions… Is she ok?  Why did you jump up?  Am I ok?  Are we still ok? Why am I scared?  I picked him up, dried the tears and told him she was ok, he was ok, and we were going to be ok.

Grace for her part acknowledges Graham.  They fight for toys – and a lot of times want the same thing.  She chews on Graham’s Elmo’s doll.  She also reaches for him.  Pats him.  Sits next to him.  And she endures the hugs quite willingly.

It really feels like there is something between them I can’t capture in words.  I know it won’t always be exactly like this, so I knew I had to try.

He has already surpassed her in so many ways – but I still hope he gets to be the little brother – and she gets to be the big sister – at least a little while longer.

And because I haven’t said it in awhile I just feel the need to say again, “normal” development is amazing and its amazing-ness just continues to astound me.

Joy