Did someone say Marvelous Monday?

Are we there yet? By there, I mean Wednesday… when Dave gets home from his business trip.

I feel so whiny about him being gone, but the worst part is he’s not in the US, so I can’t talk to him. He is in the UK… it sounds more glamorous than it is- he could be in Ohio and it would all look the same. There is no sight seeing, or time to go out. He goes from the airport to a hotel and to work and back and forth until the last day that he ends up going from Heathrow to Logan, back to his car and home to me! His hotels either have WiFi that costs £4 per 10 minutes, or it’s free and set up really poorly. Either way, he’s been gone since Saturday at 5 and I have yet to talk to him. What I am thankful for, however, are his parents who fed the remaining Cranston Martinka’s last night and sent me home with food for lunch, fresh fruit for the week and a bottle of pinot noir. Sometimes, when the hubby isn’t there, his parents step in for the win!

My usual dwarfism fact really isn’t so much fact as life this week. Many of my fellow humans have been thoughtfully (note: sarcastic) reading about the pickles (still) and sending some of the most vile emails I’ve ever read. I will never share intimate details about them on the blog, but I will respond to one reoccurring theme: “I’ll bet this lady didn’t care about the pickles before her baby was born that way.”

One: Don’t refer to Addie’s dwarfism as that way. It’s so ignorant sounding, I can’t imagine anyone wants to come off as that silly.
Two: I’ve always cared about pickles. They’re delicious.
Three: I never noticed the pickles before, and if I had- YOU’RE RIGHT! The naming on these jars didn’t strike a chord in me, which is why I understand when people tell me they don’t get it. Many often follow up that statement with, but as a parent, I support you. This is educating others, creating conversation, and the more I have shared the m-word and its history and the pain, the more response I am getting- in the positive.

And so, to respond to that… I guess all I can say is: you’re right. Before I was personally effected by dwarfism in my family, I didn’t have the same passion I do now. In the same way that many men don’t care about the fact that many heart medications cause erectile dysfunction and the medications used to treat ED are unsafe for men with heart conditions, until they’re in that place in life. Guess what: I don’t understand why you’re so upset about those medical issues. I’d prefer to live than to get a boner- but hey, that’s just me. I don’t mock, criticize or threaten anyone who has sued, written or otherwise addressed this issue. My point is, evolution happens as time goes on (duh!). When one person is effected by something, whether at birth or 30 years down the road. Whether it’s something they’ve always been passionate about, or they just recently became involved with. Life happens when we’re busy living it- all we can do is try to improve each step and make sure our feet are on solid ground- this is what I am trying to provide for Addie. I want to lay a more solid path for her.

I went into this blindly. Pathetic, I know, but it’s kind of how I fell into Addie’s diagnosis. I have been trying to write about this exact topic. I’m just learning to see and trying to help guide other parents, if that makes sense. In the end, I just want people to know that many POLP (parents of little people) are in this alone, or lonely, at least. Eighty percent of us have no experience in our own families of having a LP in our lives. We aren’t sure of the medical implications, the social interactions that will occur, or how to best protect our kids. We are doing the best we can- just as most parents are. If this whole situation still seems to be just about pickles, I invite you to come back to the blog in a few weeks when I begin the series about name changes. From hotdogs to lacrosse teams- this is a movement. I invite you to join, or honestly, get the heck out of my way.

And my random of the week:

HAPPY BIRTHDAY, MOM!

Yesterday my Dad would have been 64. I tried to hold it all together, but around 11pm when I rolled over and Dave wasn’t there, I let a few tears fall on his pillow. Today, I woke up smiling. I have a beautiful Mom who celebrates her day today! She is the most amazing woman I’ve ever met- or could ever meet. She is strong and resilient. She gives herself day-in and day-out to her patients (she’s a family psychologist), and then answers her cell phone when she’s not in session to counsel my sister, two brothers and myself in our daily lives.

I know I mentioned in a previous post that when I grew up I wanted to be me… I also hope to, in part, be my Mom. ❤

We could be sisters!

Happy Monday, Reader!

Excitement Never Ends

Everyday I learn something new… and so does Addie. Today she is 5 months young, and showing me new things everyday.

Happy birthday, beautiful.

Looking back to before she was born, I want her to know how excited we were to be having a baby- HER! … Here I am at 35 weeks.

Parenthood is scary, but knowing that I have such an amazing daughter, makes each day beautiful!

There is a poem I’d  like to share, called Going to Holland. It was shared with me to “make me feel better”. I know it makes people feel better, and I understand what it is trying to convey, but it is not how I feel. I’ve never been sad that Addie has achondroplasia. I am scared sometimes- I don’t know what the future holds- but I am not sad, I am not disappointed, I do not feel shafted. Having an LP child, I know some times a parent’s reaction can be anger, and that is OK for them. I just don’t have anger at her. I feel angry at God or a higher power when I watch her cry and can’t hold her and make it better. When she is getting poked and prodded, wrapped up, imaged, scanned and more. I do not consider Addie disabled, and I will not treat like she is.

Going to Holland
(Emily Perl Kingsley)

I am often asked to describe the experience of raising a child with a disability –
To try and help people who have not shared that unique experience to understand it,
to imagine how it would feel.  It is like this…

 When you’re going to have a baby, it’s like planning a fabulous trip – to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum, The Michelangelo David.  The gondolas in Venice.
You may learn some handy phrases in Italian.  It’s all very exciting.

 After months of eager anticipation, the day finally arrives.
You pack your bags, and off you go.  Several hours later, the plane lands.
The stewardess comes in and says, “Welcome to Holland!”

 “Holland ?!? ” you say.  “What do you mean Holland ?? I signed up for Italy!
I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.

 The important thing is that they haven’t sent you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.  It’s just a different place.
So you must go out and buy new guide books.  And you must learn a whole new language.
And you will meet a whole new group of people you would never have met.

 It’s just a different place.  It’s slower paced than Italy, less flashy, than Italy.
But after you’ve been there awhile you catch your breath, you look around…
and you begin to notice that Holland has windmills…and Holland has tulips.

Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…
and they’re all bragging about what a wonderful time they had there.
And for the rest of your life, you will say,
“Yes, that’s where I was supposed to go.  That’s what I had planned.”

 And the pain of that will never, ever, ever, ever, go away…
because the loss of that dream is a very Significant loss.

 But if you spend the rest of your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special, the very lovely things…about Holland.

…but I am in Italy. Well, no. I’m in Rhode  Island, which is not where I want to be, Italy isn’t either, but if we’re on the topic, here goes: Parenthood is Italy, as this author describes. Or, in my case, Holland. I’ve been there, and I loved it! I have never been to Italy, and while I do hope to go someday, I will always have a place in my heart for the trip I took with USA Field Hockey to Holland. I know plenty of parents with children who have no diagnosis and they are not having a good time.

It may get hard for parents of LP, but it’s damn hard to be a parent in general. Sure, my opinion my change, but being blessed that Addie chose us will never be Holland (although I’ve been and I loved it), she is Italy (where perhaps someday we will all travel to together). My dream was not to have an AH or LP child, my dream was to be with the man of my dreams and have beautiful children. Here she is, as Adelaide Eileen. There is no significant loss, there is no pain. There is beauty, little giggles, big coos, snuggles and kisses. Sometimes there are tears, but would the smiles be as big without them?

Happy 5 months April 17th babies!

Mystic

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.