It’s a Marvelous Monday!

I might be the only one, but I love Mondays. It’s the beginning to my week, and what a week it will be- Addie has her ear tube surgery this week and I am nervous for it, but excited for her hearing to be better. Happy 10 months to my baby girl! May her procedure be quick and successful!

02.17.2013

Onto MM!

Thankfully, this weekend didn’t present Nemo II. Though there was enough snow to cause some delays in my hubby’s work, we kept our power (and thus) our heat!  So… I guess that’s my thankful for the week! We’re beginning a bit out of order, but I guess that’s OK!

My random is, most definitely, to take this week and slow down. My husband got this lesson this weekend when, after being stuck inside due to the cold and snow, Addie and I decided to take a trip to Target. Dave told me he didn’t have time to come with us- even after I told him it would be less than an hour because Addie had to come home to nap. Nope. No luck convincing him. Dave needed to finish working on an amp (he was working from home due to PVD’s parking ban) and test it before 6pm- he didn’t want to bother the neighbors. OK. He came outside to move his car.  * * * We came back home, and as I was backing into the driveway, noticed Dave’s taillights come on to back in, too. “Did you just get home?” I asked him as he strolled up to my car. I looked down and saw, peeking from beneath the hemline of his jeans, slippers.

“You locked yourself out, didn’t you?!” What I meant to say was, “Karma, jerk.”

He was cold because he didn’t want to waste a lot of gas keeping the car running, but with no jacket in 20° weather, he was worn down. He came inside, carrying the bags, as I laughed at him. I put Addie down for a nap, and he helped me put the new baby-proofing foam on the coffee table in the living room. His eyes looked up at me, though his chin was still down. He said, “I think this was the Universe’s way of telling me I should have just gone with you.” “Yup. You wasted family time trapped in your car. Nice work.”

We don’t spend enough time together. Dave works 7 days a week, barely taking the time needed to trim his beard or brush his teeth, and never complains about it. He leaves before 7am everyday and is never home before 7pm. He drives over 500 miles a week. He sees his baby for less than 10 hours a week. His baby that will become a teenager before he knows it, and no longer smile at him just for being Daddy. The “we” that doesn’t spend enough time together is the Martinka Family. I am hoping that things begin to come together. That his work will finally offer insurance, and we will have way less of an oil bill after the winter. That maybe I’ll sell a few more bibs, or be noticed for my writing and I can contribute a bit. Whatever it is that gives us a break- that’s what I hope for. Money may not make people happy, but it can alleviate the stress that having none creates. Until then, however, I just need him to slow down- and I need to take a breather, too. I’m sure you know the feeling- it’s 8pm and the kids are going to bed and you spent all day with them, but you have no idea what you did.

All of a sudden, I ask Addie where her head is, and she reaches up and pats her beautiful head of hair. Then she smiles at me and claps her hands to celebrate. These days won’t last.

My request to you this week, my random tidbit is, to slow down and revel in those moments- because, as I am learning, they are so very fleeting.

Lastly, which is usually first, some information about dwarfism! I generally focus on achondroplasia, because that is the most common form of dwarfism- also the type Addie has, but this week I want to tell you about SED. Spondyloepiphyseal dysplasia (read: spondylo: spine, epiphyseal: growing ends of bones, dysplasia: abnormal growth) is the term used for a group of disorders with primary involvement of the vertebrae and epiphyseal centers resulting in a short-trunk disproportionate dwarfism. This type of dwarfism affects 1 in 95,000 babies (acondroplasia is 1 in 20-45,000). As I’ve mentioned before, all dwarfism is not the same. Not even close. With SED, features are very different and commonly include club feet, cleft palate, severe osteoarthritis in the hips, weak hands and feet, and a barrel-chested appearance.

Addie’s friend, Sara, has this type of dwarfism. She is 9, and size is not the only thing that makes her different from other children her age. It’s not just the 30+ surgeries, months spent in NICU, being born less than 5 pounds, the trach, or any other medical differences. Sara holds conversation with adults as though they are peers. She listens intently and asks appropriate questions. When she is excited about a new topic, she talks about it- a lot. In fact, if there is ever a moment of silence, count on Sara to fill it. It’s very impressive, especially because Sara had a trach for much of her young life. Watching her play at the YMCA, Sara builds tall forts, runs around with kids her age and shoots baskets like she’s in the WNBA! When she needs to sit, she simply does… but she doesn’t complain. She asks why and almost makes a that’s not fair statement referring to the bounce house, but I see her brain catch her, her eyes move to a cardboard brick that could be used in the castle wall, and she’s off to get it. Sara is not shy, she does not hide behind her [amazing and dedicated] mom. She’s far more independent than most kids her age, and has two amazing older brothers to watch out for her when her curiosity gets the best of her. From behind her wire-frame glasses, Sara’s brown eyes light up when she sees Addie and she pulls her in close to her body:

When Addie and I first met Sara, we were new to the community. We were unsure and on new ground. It was at a meet-up for our district in Mystic, CT that we found local friends to help us navigate and we are so thankful for them. In truth, Addie and Sara are as different from each other as an AH child and LP. Their dysplasias are not the same and do not effect their bodies in the same way. Expanding our knowledge about dwarfism is a learning experience for all of us, and we are enjoying meeting such wonderful friends as we do! Best of luck to Sara as she embarks on her journey to DuPont for a sleep study, pulmonology appointment, and a knee surgery!

Thank you for learning with me this week. Please ask any questions via the “Contact” tab!

Reaching Out

I got a phone call Wednesday afternoon. It was a conversation that lasted 51 minutes and 57 seconds, not once during which I yelled, begged or felt hot tears welling up behind a headache fueled by stress. Nope. This phone call has left me lighter, although I wish physically, mentally. In fact, I feel like a feather.

When Dr. Shurr sat down with us on June 22nd and told us about Addie’s diagnosis, I immediately began to research. Everything that came up was negative. From the media portrayal to stories of surgeries and even deaths. It was heart breaking. I felt guilty. I felt sad for Addie. I wanted to do everything to make life easy for her, and was left to feel like all I had done was make her life difficult.

So I did what I do when I need to vent.
I wrote.

I blogged and was inundated with response from a whole new community. A loving and understanding community- complete with information no doctor had presented me with.  I was relieved to find so many blogs with information, but where was the medical community on this one? Why did it seem that no one besides other parents knew about Achon babies?

So many people reached out to me, many emailing and sharing their stories and all they knew to help Dave and me navigate Addie’s future, and for that I am so grateful.  One mom, in particular, went so far as to call me. She is the phone call.

She shared her story about her daughter who is nothing shy of beautiful, and is completely average in all she does, except her height. She does everything her older sister does, including scaling the stairs of their multi-level home, and does it with panache!

Since I began this week with a healthy does of puff, I wanted to end it with another light-hearted piece, filling your week with the sustenance of life: compassion.

This mom spends her days helping other parents who are just learning about dwarfism, understand what lies ahead for their child, and know that there are good stories out there to go with the “bad”.  Sometimes achon kids and adults need surgery- average height children and adults are no different. Achondroplasia doesn’t have to mean a new home, not having other children or a constant battle with insurance- sure these things may present themselves in different was; a stool in every room, a sibling who needs to understand their sibling has a few limitations, and an unruly agent who needs a lesson in LP, but for the most part, it’s all  going to be OK for Addie. She is my little blessing, as every baby is to their mother. I love her- big or small, and I am so excited to journey through life as a mom learning all I can to make Addie’s life the best it can be for her before she ventures out and changes the world!