A day out!  …and what a day!

Addie and I went to the Mystic Aquarium to meet some new friends, and it was amazing.  Addie got loved on by some very adorable little ladies (babies are not an interest of the boys!)- and as she gets older, I know she’ll love playing with her new friends, while mommy got to talk to some parents who told me the truth: she’ll be fine!

The day started out rainy and gross, and I was nervous having just Addie with me. I feared the rain was an omen. I have to admit sometimes it’s hard to be a tattooed mom with less than $100 to your name and a hubby who is always at work. I feel like a stereotype. Like I provide everything Addie needs, but still seems like we’ll never be able to keep up with the Joneses- and why should we try? But there was not a judgement to be made- all that anyone saw was the precious little Addie. And later in the day the sun came out, reflecting how I felt on the inside (warm, not sweaty).

I finally got to talk to a mom I’d met online, and she showed me such a strong spirit- what she has watched her daughter go through could bring you to tears, but she smiles and offers nothing but the happiest and best words. And her little girl? If she doesn’t make you smile, you’re deaf- she will tell you everything you’ll ever need to know about life, without ever taking a breath: the world is good, and riding on the flume is the best part of any water park (when you meet the weight requirement, that is).  I also spoke with a couple that reminded me so much of Dave and me that I found myself blabbing away to them, wishing we lived closer and then calling Dave when I got in the car and bragging about how beautiful their girls are. Then there was the littest cutie, who couldn’t take her eyes off Addie- so much love coming from a 4 year old filled me with such warmth. There were stories of surgeries and sleep issues, advice about anesthesia and the first day of school, and the final word: breathe.

Best advice I got was from a dad who reminded me so much of my own- he loves his little girls and it shows! He told me that Addiewill do what all the other kids do, she’ll just do it in her own time.

There is no rush in life. I often lament that as I child all I wanted to do was grow up so I could do whatever I wanted… now all I want to do is throw on my goalie equipment and do two-a-days until school starts, and then get a pop-quiz day two. What happened to youth? It’s wasted on the young. As an adult mom, I plan on savoring everyday that I have with Addie and enjoying her milestones. Maybe she will walk at 12 months, and maybe not til 30. Who cares? She’ll walk, she will run and until then, she will smile each and everyday. I’ve spent my days since 1984 going from one thing to another, hurrying up to finish things that should have been savored and trying to be ahead of a game that isn’t a game. Life. You can’t really win something that you make up as you go along.

Addie rolls over, smiles at silly noises, holds her head up, pulls my hair and gabs away all night when her daddy gets home! She’s doing pretty darn well at her life… and she’s made our lives complete!

Thank you to all of the parents for answering all the questions I had, loving our beautiful Addie and sharing your experiences so openly.  I feel confident that we can and will have the best care, friends and love we could ever ask for for our Miss Adelaide.

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  1. says

    CONGRATULATIONS on your new addition to your family. We have a 6 year old little girl with Achodroplasia. Our story was featured on Extreme Makeover last year and we are the founders of the Understanding Dwarfism Program. Need support, an ear to listen or a shoulder to lean on…just holler!
    Jimmy, Darlene Hailey and Hudson Korpai

    • says

      Hey Jimmy,
      (I tried to send an email, but it bounced back!)
      My husband downloaded the episode for me this past weekend (no TV here!)… I watched it clutching Addie to my chest (she was sleeping) and crying my eyes out. Your story- and all the awareness you and your family have brought to the LP community- gave me the greatest joy. Hearing your wife speak about explaining Hailey’s height and beauty in the for of flowers was beautiful. I plan on planting a garden just for Addie now.

      I found your website when I was doing research after Addie was diagnosed (she was born 4.17 and diagnosed during an unrelated hospitalization on 6.22). I was SO excited to see the episode and make the website connection, etc. It’s nice when things come full-circle, especially when I can’t seem to find much connection these days (mostly in the medical field). We are battling our insurance to see Dr. Bober in DE so Addie can see someone who knows about dwarfism, and the POLP community on Facebook and seeing stories like your family’s bring us some hope that no matter what we have to do for her proper care, Addie will have such a wonderful community behind her.

      Dave (my hubby) LOVES to build things, and I know he has a million ideas about what he will make as Addie grows up to make her life (at least at home) easy to live in- especially since seeing the show. I know we would love to move (RI is NOT the best state to live in for a number of reasons), but our main concern is having enough money for a home conducive to Addie’s need and any future child we may have. So- thank you for all of the ideas.

      Please let me know if there is anything we can do to help raise awareness!

      Chelley, Dave and Addie Martinka

      P.S. I’m also working on a book series, where the character is a LP… Like books to grow starting with a book you would read to your child as a baby, and moving into school-aged books and hopefully onto short chapter books.

      Thank you so much for getting in touch.


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