Archives for posts with tag: expectations

When we were younger

15 years ago this month Kevin and I went on our first date at Living History Farms.

14 years ago tomorrow we were married there.

We were so young but felt a little old at the time to just be getting married…sigh.

I see our wedding picture every day and I almost don’t recognize us.

I don’t feel like we’ve looked like that since Grace was diagnosed. What I see now in our pictures are two people who look a little bit tired. Two people working so hard to keep everything afloat and smiling (but not as big) while doing it.

Never in our dating did I consider if Kevin would be a good medical supply orderer. If he’d be able to princess carry our daughter long after I couldn’t. If he’d be ok cleaning up poop.   How he’d respond when a doctor said: “Frankly, I’m at a loss…”.   If he’d have a hidden knack for adjusting a wheelchair or whipping up a changing table using IKEA bookshelves.

We had no way of knowing all of that and more was in our future.

We joke with people sometimes that we have five or six “date afternoons” a year. We’ve been getting season tickets to the Civic Center for the last several years. Somehow we’ve managed to never miss a show. We’ve been able to do that through a combination of help from family and respite providers who we are very grateful for.   When we were first married I admit I imagined there would be more date nights. But the reality of finding someone to care for Grace is that it’s hard. I sometimes get jealous of date nights and parent trips that others seem to take with such ease. I know social media is all perception but it just seems so far from our reality.

I struggle sometimes to understand the effect of Grace’s needs on our marriage. She arrived a year and a half into it and by our second year of marriage, we were playing by completely different rules. Graham changed the rules again when he arrived. I don’t mean to oversimplify but one of the big differences I see in parenting the two are the logistics Grace brings with her that Graham doesn’t.  There are so many people to schedule appointments with, people to communicate with, meetings to go to, labs to get, paperwork to fill out, things to have in a bag before we leave the house. If we forget anything for Graham we can pick it up at any Target or gas station. If we forget certain things for Grace she doesn’t eat and has to wait until we get home. Grace has forced Kevin and I to combine our brainpower and up our organization. Sometimes we have it all. Sometimes we forget things.

The other thing she’s forced is conversations I’m hoping most married couples don’t have. Brain surgery?…Yes or no? Try the experimental drug? Get the medicine from Amsterdam? Are our expectations for inclusion fair? Can we afford the wheelchair van? What will happen to her when she’s done with high school, how will she spend her day? How will she not get isolated?

I’ve been thinking about all this because we had a nurse today in our home who wasn’t with us all summer. She asked if we took any vacation this summer. I told her we did. We did Mt. Rushmore, the Badlands, Devil’s Tower. I went on to explain that the wheelchair van had made it possible. That Graham being older helps a ton. That Kevin’s research on van toppers and ability to pack in tight spaces was key. That it went well enough we are planning another summer vacation.

“Good for you,” she said.   “It was good” I replied.

This thing that the younger Kevin and I started is going ok. We are doing good things. Maybe not the things we imagined but things that are important.

I’m glad they didn’t know… the younger Kevin and I. We’ve probably done best learning together as we go.

Joy

 

 

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IMG-5708Grace was discharged from speech therapy today for reasons that I don’t think are fair. It was disheartening, to say the least. We handled our disappointment I think pretty well and left on positive terms – but I cried. I wanted to just sit down and cry when we left and told Kevin – “I wish there were special needs crying days”. What I meant was a day where no one needed anything from me and I was just able to be sad, process what I was feeling, etc. But I know – and have known for a long time now – that there’s just no such luxury. Reality is I cried myself to work, dried my tears, and went to work. I led some meetings, sat on a conference call, and responded to emails. My coworkers were incredibly kind, or else I hid the crying really well, in the end, no one said anything.

Now I’m home and there are expectations to meet here. Laundry. Supper. Snuggling. Sight words. Cathing. Meds. Laundry. Baths. Bedtime stories. Dishes. Picking woodchips out of Graham’s coat (long story). But I’m taking a break from that to write this. I need to somehow express that I’m sad. That I feel inadequate to advocate for Grace in a world where the rules are veiled in shades of gray. That in my heart of hearts I don’t actually know what to expect from Grace in the area of communication and that I recognize that makes it harder to advocate for her. That having a nonverbal child is challenging on so many levels.   To describe those levels in words doesn’t seem possible.   I can only tell you that Grace’s silence often makes my heart ache – however a smile from Grace, and a long look straight in my eye can make me feel wonderful.

There is value in being able to communicate. There is value in taking the time to figure out how those around you communicate. There is value in listening with not only your ears, but with your mind, heart, and eyes.  Grace’s inability to communicate the “regular” way takes nothing away from the value of what she has to say.   We regularly communicate about Grace with those who speak for her and even have tried to describe in words what we think her communication style is. We do this because it’s important that her voice be consistent. Here’s what we say in Grace’s resume: “If you are serving as my voice my parents think my voice is largely optimistic, shows a sense of humor, is a little stubborn, is reassuring, and gets to the point. They don’t want my voice to be negative, put anyone down, or be disrespectful.”

Grace being nonverbal has been a constant struggle and will continue to be. I wish there were answers. But true to form Grace is Grace. She’s ours and we love her. We love her on crying days and good days. Her presence in our family is no less because of her inability to talk. We will continue in our own way to figure out how to make sure she’s heard.

Joy

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The question we were asked was something like, “How has Grace affected your life?”- Kevin and I just looked at each other for what seemed like several moments- too long for the situation we were in.  We were being interviewed on camera for a TV commercial featuring Grace for Make-A-Wish’s Jolly Holiday Lights.  Luckily they can edit out the long pause if they end up using that part of the interview!

As I looked at him – and thought about all we’ve been through both in the long haul and in just the last week… I started speaking and crying.

Last Sunday was Grace’s dance recital.  It was wonderful.  So many people were there to see her!  She was having an incredible time!  Grace, Jill (our ballet engineer), and I were sitting towards the back of the auditorium.  As the recital started Grace fought to stand up and so I let her.  She stood in front of her seat and made some noise…noise that said “let me go dance!”  She put her little face at eye level with Jill a few times and tried her best to convince her that it was time to go dance.  I was so moved by her persistence.  I tried to tell her that she’d be tired before she even got up there to dance…but she insisted on standing…and continued to plead her case!  She did sit on my lap for a song before it was time to go.  When it was her turn up there, Jacque, Chloe, and Jill all in place I just held my breath trying to take it all in.  Love in action….playing out right in front of me.

Monday felt much uglier.  We didn’t have a nurse that day, so I got to be Grace’s nurse for the day.  I took her to therapy and was frustrated to see her fight not to do things that I know she can do.  I felt like a horrible mom, I haven’t been at therapy a lot lately and I didn’t know how hard a time she is giving them about certain things.  I cried when I got her loaded up in the van…. How am I supposed to know everything when I’m not there every minute?  How can I do more than I’m doing?  Are my priorities all off?

Then we got to school.  Grace is behind- there is no way of not noticing it there.  There’s a lot I don’t know about her day to day.  The other kids were quite generous in explaining the rules to me, how to use an ipad and where to line up after PE.  Oh how I wish she could tell me the rules – I can’t ask her about them, I can’t listen to her talk about them with other friends – there’s no “what’d you do at school today?” while we eat supper.  And then there is art class.  What is Grace supposed to do in art class…the answer to that question alludes me.  Do you know that they talk about Thomas Jefferson in 1st grade?

Tuesday night was a PTO meeting.  At PTO the related arts teachers were all there, I asked to spend a few minutes with Grace’s music teacher – to make sure everything was going ok with Grace in class.  She asked me some basic questions about Grace.  Why did she wear the helmet?  How is her vision?  How is her hearing?  Could she hold an instrument?  My heart sank…it’s almost Thanksgiving and this teacher didn’t know much about Grace…that was our fault.  I need to step it up!

Wednesday was communication class.  Kevin and I have taken a class the last eight Wednesday nights.  We have been learning about different ways to communicate with Grace, how to grow her interactions with us, and its hard stuff.  Grace was different from the other kids…we didn’t go into it expecting her to talk more, or pick up new vocabulary, or use sign language better…we came into it just needing to learn more…desperate to get any kind of communication going with Grace.  In October we took another class about communication, and it made sense!  We think we have a way to help grow Grace’s communication – we are starting with 15 words.  15 words are not very many.  But, 15 words can do a lot.  We need everyone to be on the same page to implement it though.  Everyone’s busy.  Her teachers, her therapists, and we need them all to do their part.  I ended up begging (in a good natured manner) for something we needed from her therapist to take the next step.

Thursday night was parent teacher conferences.  We were at school for over an hour.  Grace is doing well on her goals.  There are limits though.  And as much as we appreciate everything that’s being done – we want the ideal.  There’s no answers for some of our questions.  We aren’t confident in our expectations and people expect us to be.  But here’s the thing…how are you supposed to have expectations about Grace, she’s constantly evolving and changing, she’s doing things they told us she never would, and there’s no one forecasting her future for us these days.  We are on our own.

I am the one who started answering the question first…I believe I started out by saying that Grace has been “life-altering” and I went on from there.  I don’t remember the rest of what I said.

Even now I’m not sure how to answer.

Joy