Archives for posts with tag: emotion

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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IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

IMG_9306I was discouraged this morning as I drove through the rain to get to the hospital.  It was gray and gloomy and that’s how I felt.  This is overwhelming.   I asked myself how we are really supposed to do all of this –  work , be with Grace,  represent Grace, be with Graham, help each other with all the emotions that come with what we are going through, and do it all on little sleep.

Last night I was home with Graham.  We drove through a rainstorm on the way home.  We saw a beautiful rainbow as we approached home.  “Mom, it’s my first rainbow,” he told me.  I replied “yay” .  He said, “tell me congratulations.”  I did.

I loved that moment.   Kevin and I laughed about it later.  It was somehow just what I needed.

This morning there was no rainbow for me to see before I got to the hospital.

Today we got to give her a bed bath.  You can see her ribs.  Everyone is excited about this.  Her tummy is normal – no sign of the roundedness that brought us in here.

Tomorrow we will stop the tube that’s pulling food out of her stomach and if she does ok without it for 8 hours it will come out.

On Saturday we will give her Pedialyte.  While she hasn’t met the measure for any of this to happen (that they’ve been telling us she needs to meet) the surgeon reminded me of the art and science of medicine.  With Grace, she needs to use a little art.  Again what can’t be explained by science is Grace and that makes me feel a little better.

It’s also just been good to be with Grace today.  To see her furrow her eyebrows at people.  I saw her grab a toothbrush from a nurse so fast that the nurse was surprised by her strength.  A stuffed horse arrived today from a family – that horse has been drooled on, petted, and flung around a few times.   It’s tucked in next to her now.

It’s raining again outside.  She’s snuggled all on her side, even though I tried to position her differently – and for right now that’s enough.

Joy

14-Harris

I was listening to my ipod today in shuffle mode. Ben Folds’ “Gracie” came on.

It’s a song about his daughter..her growing up.

It was the end that really got me – he sings

“there will always be a part of me, nobody else is ever going to see but you and me, my little girl, my Gracie girl”

I got to wondering what part it is of me that my Gracie sees when the two of us are alone.

Sometimes it’s my frustration that I’ve been peed on- again.

Sometimes it’s kisses on her cheek.

Sometimes it’s tears.

Sometimes it’s singing in her ear.

Sometimes it’s a prayer.

Sometimes it’s me telling her it’s going to be ok.

Sometimes it’s me saying “ I got you, I got you, I got you” as we wait for a seizure to pass.

Sometimes it’s me begging her to cooperate.

Sometimes it’s me telling her how much I love her.

Sometimes it’s just quiet- a snuggle- the longness of her body somehow still fitting into the shortness of mine.

Sometimes it’s me telling her “I’m almost done- I promise” as I comb her hair or brush her teeth.

Sometimes it’s me asleep beside her.

My Gracie has seen me:

Desperate and sad.

Brave and confident.

Madder than I ever knew I could get.

Exhausted.

Impatient.

Thankful.

Vulnerable.

Laugh with pride.

Experience wonder.

Experience grief.

Embrace quiet.

Experience love.

Experience doubt.

Try, and try, and try again.

I value very much that part of me that Gracie sees that no one else does. My thanks to Ben Folds for pointing it out.

Joy