Archives for posts with tag: Birthday

12262Grace turned 12 last weekend.

Twelve.

I can’t fathom how time has moved both that fast and that slow.

Grace’s birthday usually finds me a little down. It is hard to celebrate what is while also very aware of what could have been. One of her presents was a very large Sofia the First balloon. I walked out of the store feeling half excited because I knew she’d love it and half sad because her likes aren’t more age appropriate. Having said that I also feel like I should state for the record my sadness doesn’t take anything away from my love for Grace. My love for her is big, life-changing and powerful.

We took Grace to see Stomp for her birthday. She loved it. I did too. There was so much energy on the stage. So much non-verbal communication flowing between the performers and out to the audience. They did it all using objects that were not made to be musical. (Plastic Target sacks and newspapers became musical instruments at times.)

There was a point in the show when all the performers were standing in a line across the front of the stage using only lighters (clicks and flames) to deliver that section of the performance. All the lights were out- it was pitch black. Accompanying Grace in her wheelchair we were in the very front row so we could see the concentration on the performers’ faces as they clicked and burned their way through the piece. It was phenomenal to see. Being able to see it added something to the performance for me.   The look of their combined work was very precise. Small lights in a large dark room danced across the stage. The concentration on each of their faces showed their determination to make it happen.   With all that focus they made it look effortless. It seemed shorter in length than some of the other pieces but I think it was my favorite piece.

It was understated but effective.

It was potentially easy to overlook as a person relives the show because it wasn’t loud or high energy.

It was a little dangerous to learn I’m sure.

Mistakes could be easily seen by a large group of people. There was no way to hide them.

Each performer had to do the work to make it happen.

I think Grace is a bit understated but worthy. She’s easy to miss because she’s quiet and doesn’t show a lot of emotion. Loving her is dangerous in that all parenting takes courage, but special needs parenting perhaps takes a bit more daring. Parenting Grace takes place in front of a huge audience, there are many people who weigh in, many people to judge, many people to bless her, and many who help determine her future.   We are working to make sure all their input comes together and results in a growing and thriving Grace.   We are doing it all with the tools that we have. We are making our own music. Grace loves music. She can love Sofia the First and Stomp!

So here’s to her 12th year! It will be an adventure.

Joy

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img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.

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

 

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Maybe it’s because the laundry is piling up- because there are smaller loads caused by Grace’s random “schedule”.

Maybe it’s because Graham can’t quite grasp the concept that he should put a toy away if he doesn’t want Grace to chew on it.

Maybe it’s because Grace had five days of one hard seizure a day because of an illness that should have shown up other ways. And it wiped her out. (At least we have it figured out now!)

Maybe it’s because the medicines she needs to get better are hard to find, even with all the pharmacies in Des Moines. And then there are all the phone calls that go with illness.

Maybe it’s because Graham is having trouble separating from me morning and evening.

Maybe it’s because no one person seems to know how to work the assistive technology we are trying with Grace, but the rep thinks we should just call the help line…..like we don’t have three million other calls to make. Why can’t it just work?

Maybe it’s because caring for Grace means caring for her 24/7 – always, always, always, being “on call”?

Maybe it’s because we are planning for if Kevin or I or both of us would die. And it’s depressing. Big. Messy.

Maybe it’s because the teachers at school can do better at Grace’s hair then I can.

Maybe it’s the threat of a surgery that would reroute Grace’s urine through her appendix and out her belly button.

Maybe it’s because I’m feeling like I have to redefine inclusion for Grace or risk driving myself nuts.

Maybe it’s because I’m trying to eat healthier and not eat ice cream very often.

Maybe it’s because Grace is about to turn 9, and I’m not a big fan of her birthday- the day that signifies the gap- the unrealized dreams- and the momdom journey I never thought would be mine.

Maybe it’s because my hands are so cracked from washing, bathing, and cleaning that they are painful.

Maybe it’s because when I’m with Grace and Graham by myself I still don’t feel like I can meet both of their needs effectively….someone gets a late supper, or someone gets to bed late and gets rushed through stories and bedtime snuggles.

Maybe it’s because Kevin and I both have jobs that take us out of the picture every now and then and there’s a lot of prepping and planning that needs to happen for that.

And maybe it’s a combination of a few of those things…..

If you took the time to read all that, let me give you a happier ending. One morning this week I got to work and took off my dress coat and had a moment. I went to put my car keys in my pocket and noticed that my coat is covered in fuzz. Pink fuzz. The fuzz is from Grace’s coat. I have earned that fuzz lifting Grace in and out of the van to therapy, church, appointments, errands, school, etc. In my coat pocket there was a pill crusher we used for Grace’s meds (that I never took out after we went bowling with friends over the weekend), Graham’s kaleidoscope, a prize of Graham’s, a pink pen I put in my pocket to take to a presentation I made about Grace, and Kleenex from wiping two little noses.

In that moment I just let it soak in that my life is intertwined with these two little people and the man who I share them with. Inescapably so. Funk or no funk. I promised myself I would find a way to relax. I have to. None of it is really their fault. It’s just a lot. It’s just part of how our family works. There are times like this when it feels like Grace is just falling apart and it takes everything we have to put her back together. The world keeps on spinning as we do that…and that line we walk between handling things and being overwhelmed gets crossed. We try so hard not to be defined by any one member of our family, but it happens from time to time. I needed to write about it this time- to remind myself. And maybe, just maybe it will remind me to relax somewhere else down the line.

Joy