Archives for posts with tag: grief

IMG-0121Grace and Kevin entered the empty waiting bus for the State Fair first.  Graham and I followed.  The bus driver had everyone else wait while he and Kevin made sure Grace was all fastened down for the ride. Graham chose seats for he and I.  He chose the bench right by the accordion on the double bus.  We were all settled when the rest of the people filed in and eventually the bus took off.  There were three people across the aisle from Graham and I.  I can only guess a mom, dad, and college-aged daughter. Two of three wore Iowa State shirts, the other a shirt with the American flag.  They all wore Nike shoes that had seen better days.  I noticed the man’s gaze settle on Grace.  “I’m surprised someone would go to all the work to bring her out here,” the man said.  He was looking right at Grace as he said it.  I leaned forward but looked down.  His wife didn’t say anything immediately but then she said “Maybe they just take her to a few things”.  After a pause he spoke again saying “Maybe they get more out of things then I know.”

If the two of them said any more I missed it.  I missed it because Graham was psyched to see the accordion of the bus expand and there were trains – so many trains below.

The conversation has haunted me in a way.  I wonder if I should have inserted myself? But what would I have said?

First, I’d like to think I’d say thank you for noticing the work we do.  It is work to do things with Grace.  There’s a level of planning for her that we don’t worry about with Graham.  There are things she has to have, and not just things we can pick up somewhere on the fairgrounds if we forget.  There are the hills we get to push her up. There’s the trying to find a space in a crowd of people for a girl in a wheelchair to be up front and see what you want her to see.  The crowd just doesn’t split when a wheelchair draws near.

Then I’d have confirmed we do take her to a few things we know she loves.  The DNR building has the fish.  We saw dancing at the Bill Riley talent show.  We hung out with Abby Brown at the PBS booth for just a few minutes.  There was music everywhere.  We ran into one of our favorite people, Hannah.  Plus she was just outside.  It’s summer.  Kids should be outside.  She also endures the things the rest of like!

As for his last comment, I don’t know what I would have said.  He’d touched on one of the great mysteries of Grace.  The amount she takes in and what she does with that input is hard to discern.  But here’s the thing, she didn’t complain.  She looked at the doll houses.  She watched the bands.  She slept a few minutes when Graham couldn’t decide what his one thing to do on the midway would be.  She watched the dancing.  She watched the people.

But there’s also this…we were there as a family.  We attended the state fair together.  Sure we split up at times because Grace can’t do the same things that Graham does.  For example, he likes to ride the skyglider.  Even if we did get Grace on there someone would still have to run her wheelchair up to the other end of the lift.  But we came together, left together, and hung out quite a bit together that day.  Family time is important.  Tradition is important.

I’m sure it would have been too much to tell him that there are also bits of grief mixed in for something seemingly just normal.  There were girls who look her age walking around the fair in groups together, no parents in sight.  There were girls her age in the talent show who I watched wondering about what could have been.  I looked at what girls Grace’s age were wearing and wondered if they would think it was strange if I asked them where they got their clothes.  I feel like Grace is in a bit of a fashion rut…out of kid sizes and the places I’ve relied on to clothe her!  (I find myself unsure where to shop for her now.  I want more than anything to keep her relevant.  She’s already got plenty, not in her favor I don’t need to set her up for anything based on how I dress her.)  Middle school looms and has me anxious for her, that’s a different blog I’m sure.  There are the looks.  The people who feel sorry for her.  The people who feel sorry for us.  The people who look away when you make eye contact.  There are the little kids who crane their necks backward to keep their eyes on her even as their parents holding their hands pull them forward.  There are families getting on the skyglider, families walking together hands linked, families who appear more nimble than ours.  The grief just lies on the edges, I’m aware of it, but on this day I could process it and keep going.

Finally, I’d say I’m grateful the man could acknowledge that he didn’t know what he didn’t know.  Some people count her out automatically with just one quick look.  I sometimes have said that it takes a special person to really see Grace.  I’m not so sure special is the right word-it’s not enough.  What I’ve learned is that it takes someone with an open mind, an open heart, and a willingness to take the time to see that matters.

It’s a bit strange to consider how many of the conversations like the one I heard that day about Grace I’ve missed as random people have encountered us.  As I finish writing I’d just encourage you to keep an open mind, and open heart, and be willing to see what you may not have experienced.

Joy

 

 

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MK_PFTHPURPLEB1CHAR_20170227_7962999163.jpegWhen I was growing up my parents got us a Christmas ornament every year. It was a tradition. I love unpacking those ornaments each year- seeing my mom’s handwriting listing my name and the year I received the ornament on the boxes. When Kevin and I were married those were the only Christmas ornaments we had for our tree.

It’s a tradition I wanted to continue with my kids. For Grace’s first Christmas we’d been through a lot and I remember struggling to find an ornament that represented that time- something we’d want to celebrate and remember every year about baby Grace as we unpacked that ornament. Ultimately I settled on an ornament of Dumbo taking a bath in a tub. The note I wrote on the box was one sentence in length that says “Because Grace loves taking a tubby!” One year it was a Cinderella ornament that marked her invitation to a princess birthday party. The first year she rode a horse-it was a horse. The year we flew to see her Aunt Heather and Uncle Drue married in Virginia it was a plane. This Christmas it was a Rapunzel ornament that we bought her at Disney World when we visited.   Each year I write a note on the box about why we chose that ornament for the year.

My mom never wrote messages on the box about why she chose the ornament. She never had to because I know and I can tell the story. I started writing out the reasons on the ornaments we buy for our kids because I knew Grace wouldn’t be able to tell the story.

Special needs grief is a funny thing because this year as I was packing those ornaments carefully away I got to wondering if it mattered.   If anything happened to us would those ornaments really follow Grace? When she grows up and if she were to live apart from us would anyone read the notes to her? Put up the ornaments? Was I just creating more for Graham to have to go through someday?   Was it an unnecessary tradition? And in a larger sense if we are the sole keeper of Grace’s story and why she matters a few ornaments won’t begin to tell the story.

I feel different about Graham’s box. His ornaments are for him to have so that one day he can remember his growing up by going through a few ornaments that represent snapshots of what he liked and how he grew. I can picture him sharing them with his kids telling them about what Dad was like when he was little.

Ultimately Grace’s ornaments got packed in her box. I came to no conclusions other than it’s not a waste. If those ornaments are only ultimately for me then they are only ultimately for me. I chalked it up to grief sneaking up on me. Grief on a normal Sunday when we’d been to church, I was doing laundry, Grace was playing happily on the floor pulling every toy out of the basket in front of her, Graham and Kevin were out playing in the snow, and we were planning on Casey’s pizza for supper. It was grief that comes from the helplessness of not knowing. Grief because I’m not sure what to dream for Grace in the future. A grief that her experience will never be all that I dreamed for her.  And the thing is I have a level of acceptance about all of this. I do. I swear. But even with acceptance, there are moments that catch you off guard and then all you can do is take the time to acknowledge the grief, share it if you need to, process it until it’s processed and then keep going.   The ornaments are packed away but the work continues.

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

 

calendarTwo weeks ago I wrote an email to my boss telling her that our home health nurse was leaving and that the nursing agency had told us there’d be no one to care for Grace until at least July.  We were going to be on our own for at least two weeks.

“That’s the last thing you need Joy” came the reply.

She was the first person I’d told who hadn’t said something about how good things will come out of this.  In a way it felt like she was the first person who’d really heard what I said.

A home health nurse – a really good one anyways – is an amazing creature.  Capable of coming into your home, caring for your child, speaking for your child (in our case), doesn’t notice the dishes in the sink, and doesn’t mind that there is a little brother who needs attention too.  That nurse sees you when you are sick, knows when you are behind on laundry, and gently tells you that Grace needs more bibs or extra clothes at school.  That nurse sends you pictures now and then so you can see what Grace is up to.  That nurse never minds that you call to check in because something about Grace just wasn’t quite right the night before.  That nurse takes care of Grace with such a combination of gentleness, enthusiasm, caring, attentiveness, and love that you never question Grace is being cared for.

We are having to give that up.  There’s a loss there.

A new nurse is a new nurse.  There will be lots of things to figure out.  Someone else will need to learn all the ways a seizure can look in Grace.  Someone else will have to learn the differences in her vocalizations.  Someone else will have to learn to let her go so she can walk on her own.  Someone else will have to learn the cues Grace gives us when she’s not well.  Someone else will give her medicine, feed her, diaper her, and all that goes with that.

Selfishly there’s also a loss of vacation time that I’ve been mourning.  The only time I’ve taken off in quite awhile has been to take Grace to doctor’s appointments.  We go to Minnesota a lot for those appointments but I wouldn’t exactly call it fun or relaxing.  My hopes of a few days just to get away will have to be delayed.

And in one moment of grief I thought to myself that maybe this was the universe telling us that we can’t take care of her.

My mom and dad are coming in, saving the day in the amazing way that they do.  They have graciously worked it into their retirement (which is incredibly busy and sounds wonderful).  I hate to take them away from it.

We will make it.

A new nurse will learn.

It won’t be the same.

Graham is really struggling with the change.  He’s asked for the nurse each night.  He’s been very concerned that no one else would be able to find his favorite episode of the show “Super Why”.  He likes “the puppy one.”

The thing is the nurse knew that and before we’d be there she’d have the puppy one all ready to go on Netflix.

Such a thoughtful thing that made life easier.

Joy

In less that a year I’ve attended two funerals, both for children. Children with problems that should make “adult problems” insignificant, problems that they did not bring upon themselves, problems that they had no ability to control. These problems were far from insignificant to their parents; if anything the problems these children faced day in and day out were just as much as monumental to the parents as it was to their child, perhaps even more.  When a person is so reliant on another the two (or three) essentially become one, which can make it difficult to find or create a separation

Even as the parent of a child with her own “problems” I don’t know what to say to these fellow parents…I wish this didn’t happen…I’m sorry for your loss?  I feel foolish saying something so ambiguous, I of all people should be able to relate better than most, help give some level of comfort, and provide some form of understanding.  I want to say something that will help, something that may help them understand their loss, something that I would hope they could say to me if the roles were reversed, something profound.  Raising a special needs child can be a lonely place and it makes you want to say something to the effect (yet more profound) that ‘I know what you have gone through and while I still can’t fully imagine I have an idea of what you are about to go though.’

At the visitation the grandmother of the child said to Joy and I that it was good to see us and glad that we made it to the visitation; considering I grew up in a small town with the father’s family I responded that I wish we were seeing each other under better circumstances. She responded that this was the best, it was his time, and that this is a blessing.  That kind of took the breath out of us…she gets it (that kind of profound).

While it’s hard to know what to say I feel that the most important thing goes unsaid.  There is a connection amongst special needs families, a tip of the hat if you will, a nod, an understanding that really needs no words.  You see it in a parking lot, at a restaurant, or grocery store.  At the recent funeral I said to the father that ‘I’m sorry and I really don’t know what to say’ all the while imagining myself in their shoes, I continued with ‘you were the best parent you could be and I’m sorry’.  The father of this child looked directly at me and responded “you know” (even more profound), yes I do know.  I know the fear, determination, anxiety, happiness, stress, and joy that come along with raising a special needs child.  I know that life is dramatically different now and will be dramatically different after. I know that decisions have been made that would have never have had to been made. I know there have been many sleepless nights, too many hospital stays, too little rest, and just not enough time.  I know that a child with special needs is probably the strongest person you know and whose appreciation of something so simple could tell you they were feeling better or happy.

To K & S…you are wise beyond your years; you have been good and faithful servants, well done.

kevin