Archive of ‘Melody’ category

Rain dancing.

“Life isn’t about surviving the storm. It’s about learning to dance in the rain.” -Unknown author

Mother’s Day 2017 was yesterday.  My mama stopped by and gave me a bracelet with that quote on it. 

Rain dancing.

We’re not touristy at all. (after hospital stay)

I didn’t realize until I read the bracelet that I have gotten pretty good at rain dancing.  I know that in general I am a glass half full person.  It is just who I am.  I can’t dwell on the difficult or the Hard for too long. Sometimes that isn’t the healthiest choice but I’m working on it.

One of the last photos I took before the accident.

Sometimes it catches up to me.

Sometimes I watch others get frustrated, angry, sad, infuriated; and I feel myself get frustrated because when do I get a turn to feel that way? But that is my choice. I am trying to learn to allow some anger, some sadness, some frustration into my emotional arsenal. 

But rain dancing. That I can do.

But I don’t realize I am doing it until later.

In front of a volcanic crater lake. NBD.

So we went to Iceland. My outdoorsy, mountain loving, traffic hating, lovable hunk of a husband talked me into a week long trip in the most sparsely populated country in Europe.  And I was so glad, and continue to be glad that we went.  #icelandisstillnice

For the ten of you who read my blog who aren’t family and friends- here is a brief synopsis of what happened on Day 5 of our trip.

We had reservations to take an one hour horse back tour with a guide across the countryside of Iceland.  Our son receives hippotherapy twice a month and I have always loved horses.  Todd had never ridden and knew it would be special for me so we booked it.  We dressed in these huge rubber trousers that were similar to what fireman wear, and we set off on our beautiful thick-coated horses with our young but experienced guide.  About 5 min into the trip, we both commented how well trained the horses were, how easy they were to ride, and how much fun it was.  We all stayed in a nice line – the guide, then me, then Todd.  The guide asked if we minded doing a slight trot with the horses and of course we said sure, so we trotted a bit.  It was fun but when we slowed down, I could feel a difference in my horse.

He wanted to keep trotting. He was very close to the guide’s horse and if I tried to pull the reins back, he tussled a bit with me.  We stopped to take pictures and then my horse started walking off to the side a bit. I tried to lead him back over, and for a split second it seemed like he was going to obey but then something just changed.

No loud sounds, no strange movements by me, the horse just started to run.  My first instinct was not to use a calming voice like she had suggested because of course I was startled and frightened. But then I remembered and I tried to use the techniques she suggested.

Terribly unflattering photo of my first time sitting up in a chair at the hospital

He wasn’t having it.

He took off like a shot and the rest is history.

History that changed me.

History that brought on more rain dancing.

What followed was a six night hospital stay at one of the two hospitals in Iceland, in the beautiful town of Akureyi.

I received/suffered/endured (not sure what the right wording is) five fractured ribs, a punctured lung with a pneumothorax, and a broken sacrum.

Five broken bones that cannot be put in casts. Cannot be set. And the sacral bone is what I make contact with, every time I sit down. 

View from my hospital room

It was scary. I’m not gonna lie. Lying on the ground after being thrown from the horse, coughing up blood. I couldn’t turn either way because my broken bones are on opposite sides of my body.

It was scary. 

But I knew I would be okay. Something kept me calm. Something told me that it wasn’t going to be fun, but it was going to be okay.

The handsome Icelandic EMTs who sat with me in the ambulance, telling me how much time was left until we got the hospital, they told me it would be okay.

The nurses who greeted me, who sat beside me in the ER while they tried to figure out what was broken, and how serious everything was. They kept me calm. They talked to me like everything was okay.

They know how to rain dance.

Helga, the young nurse from a nearby town in Iceland who had attended nursing school in Chicago. She gave me a foot massage and chatted with me about every day things, just to keep my mind off the pain.  She helped me brush my teeth and wash my face myself for the first time after being hurt.

She knows how to rain dance.

Skyping from far far away…

“Take a car ride to Iceland?” said Evan one night when we Skyped. My heart broke but there was also a part of me that felt such joy that my little guy missed me so much and wanted us home. We have worked so hard on keeping him engaged and connected to us- and he really missed his Mommy and Daddy. 

It was very hard to dance in the rain when I thought about my kids from my hospital bed- but my friends and loved ones kept texting, emailing, calling, sending cute little videos so I could hear their voice and see their smiling face. (I’m looking at you Talia!) In times of strife, you really do realize the love and light in your life. 

And then we finally came home. After a 5 hour car ride to Reykjavik and a six hour flight home, we came home to a clean home, and sleeping, very loved on children. Thank you Mimi, Pappy, Gran, and GrandRich!

Chilling with my girl

For the past 2.5 weeks, I have been setting up shop in my bed, regularly icing my fractures, trying to stay comfortable, and walking around when I can.  I went from a wheelchair to a standing high walker, to crutches, to a slight limp.

Rain dancing was really hard the first week I was home when I couldn’t sleep because the pain was so intense. When I had to get an elevated toilet seat because I couldn’t bend over at all. When my son only wanted to climb on my lap and no one else’s so his behavior became erratic and he acted out. 

But somehow we got through it. And one day I looked to my left and both kids were in bed with me. Melody in the crook of my arm and Evan lying next to her.  He looked up at me and said, “Hi mommy! Can I go in Mommy and Daddy’s room? Can I cuddle you?”

He asks questions that he already knows the answer to as a way to communicate and stay engaged with me.

It hit me all at once. Without realizing it, I had been enjoying my time with both kids immensely. Take out the responsibility of keeping up with housework, teaching, and all that was left was a focus on my recovery and the time spent with family.  I felt guilty that I couldn’t do the dishes or walk down the basement steps to do the laundry. I hated not being able to take the kids were they needed to be.

Enter rain dancing.

All that was expected of me was a focus on my healing and when I felt well enough to sit with the kids in bed- this awesome thing happened. They both figured out ways to spend time with me in bed.

Evan reading with his head in my lap (ribs protected by a pillow)

Mother’s Day music time

Just last night, Melody snuggled up next to Evan and just said to herself, “I love you, Evan.” and closed her eyes and smiled. 

Those moments are hard to catch when I am caught up in cleaning up after the kids at night, making lunches, laundry, and my mind is 153 different places.

I want to remember this.

I want to remember what it feels like to just focus on family. Just focus on the kids, my husband, my mom.  Whomever is with me at the time.

I know that will become difficult all over again when I go back to work in a few weeks and more responsibility is back on my shoulders. But I do hope that I can remember what it felt like to dance through the raindrops these past few weeks.

**Update:

after writing this earlier today- Evan had a seizure, after having one last night. He had four in one day last week.  I felt myself tense up all over. The worry is back, the concern over if we are medicating him correctly. The neurologist is talking about more aggressive meds, new tests….

Rain dancing is really really hard when these things crop up.

Just being real.

But tonight Evan put his head on my stomach and listened to the digestive sounds it was making and we had a huge laugh about it. I used to do that with my mom growing up, and it cracked me up. He likes to play with the word and pretend to say the ch sound at the end so he kept giggling and saying, “stomach (with the ch digraph sound)” and then “how are you?” with a big grin on his face.

I’m going to think about the stom-itch sounds instead of the seizures.

At least for a little while.

 

 

Oh…….wow.

This is the post that a friend told me I would write eventually.  The one about having a child with typical development following a child with special needs.  The one that has me simultaneously in awe, and slightly heartbroken.

In a nutshell, a hard post.

This kid.

This kid.

This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them.  On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music.  Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm.  He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.

So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)

I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.

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I turned to my pile of clothes and started sorting.  A few minutes later I noticed M walking around her crib.  Thought nothing of it.  Still sorting.  Then a few min after that she was in her closet trying to open boxes.  Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.

Oh…..wow…..

That musical book is not magical.

Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)

She is more interested in playing.

interacting. keeping joint attention.

throwing fits when she doesn’t get her way.

doing what 14 month olds do.

Not what my child with Williams Syndrome and autism did at that age.

I have these moments a few times a week.  Actually probably a few times a day but I don’t dwell on every one.  Melody is not a baby genius. She is not advanced. She is just developing at a typical rate.  What is true is that things come much easier to M than they did for Evan.

On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time.  He would hold things over a box or a bucket but not let go.  This was HUGE in the eyes of the early intervention evaluators.  I had never thought about it before they pointed it out to me.  I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.

I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it.  I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.

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Climbs. Every. Thing

This difference in development is both fascinating and tough.  I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?

That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.

I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.

Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.

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Hey Mom, you can be proud of both of us!

 

Look at me, Mama

Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old.  I’ve talked about it here, here, and here.

A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study.  I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process.  Some months I looked forward to the call, because I was excited to share the new words Evan was using.  Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)

Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”

Nope. Still doesn’t really do that.

But there was one item that puzzled me month after month.

The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”

Huh?

I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like.  I’ll never forget what she said. “You’ll know it when you see it,”

Ok sure, I’ll just figure it out on my own.

Well, until a few months ago, I don’t think I really knew, but I do now.

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Look at me, Mama!

I know now because Melody does it, all day, every day.  She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.

So that is what she meant.

Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times.  But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him.  He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.

Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.

Sometimes this feels amazing, exhilarating almost.  To know that she is “on track,” that she wants to make sure I am there.  Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it.  To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)

Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.

Melody is standing on her own, and almost walking at nine months.

No hands!

No hands!

Evan walked at 25 months.  I can remember it like it was yesterday. It was so exciting.

I know….they are different people. And not just because of their chromosomal makeup.  They are different genders, different personality types, etc.  I shouldn’t compare.

But having a child with special needs born first, it is hard not to.

I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs.  They said it would be so different.  Not bad, not good, not better. Just different.

I couldn’t agree more.

But I will say this, having the two of them together, is way better.

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Bro and sis, checking out the geese

Sigh....My heart.

Sigh….My heart.