2011 Angelman Walk

Oh boy...here we go.

2011 Angelman Walk at Coopers River Park

I have this theory (among many) that when you have a moment of deja vu, it means you are exactly where you are supposed to be in life; that, somehow, if you feel like you've lived through a moment in life before, it has to mean the universe is letting you know you should be living that moment. And, I guess that's how I'd have to summarize last weekend.

All 17 "Angels" at the walk.

I just felt like I belonged, like it was exactly where we were supposed to be.

 

Sometimes I feel selfish. Like why didn't I do these things before Rhys? Why did it take my world being quaked to make me jump aboard this ship and would I have done it if it hadn't? Up until this point, I have done it because every day, I peer into soulful big blue eyes that belong to a child that is mine. And I love him with a painful, throbbing love that makes me want to change the world for him. I want to speak fearlessly and change stereotypes and possibly stretch hearts and minds to accept my baby more because he is mine and that's what mamas do for the ones we love. We move mountains.

I consider myself a selfless person. I volunteer when I can. I give a dollar or three or four when the check-out lady asks me if I want to add a donation for diabetes or the homeless shelter or breast cancer research to my grocery bill. I cry when I read stories about children who are hurting, and sometimes I lie in bed at night forcing myself to think of how bad it would hurt to be one of those moms. And yet sometimes it disappoints me that it took opening my arms to the tiny slippery body of my baby--the one with a huge smile and blond as can be hair--to make me want to look deeply into the eyes of others with disabilities.  Like the handsome blond boy at Albertsons who sometimes helps to bag my groceries…I appreciate how he always bags the bread separately so that it doesn't get smooshed. Because, to me, he is Rhys.
And I wonder if that's selfish--having to have a personal connection to make me feel it. But then, I remember that everything we learn in life goes back to connections and emotions and knowing someone who knows someone that something has happened to. We teach our kids to treat people how they want to be treated, and the suggestion of bringing it back to ourselves is selfish in itself...but it's how we learn.

It's how I've learned. Knowing what it feels like to love someone so desperately that has that one less chromosome and to slowly let that feeling seep in deeply until it goes beyond just my child...it makes me so very passionate.

And, I guess with all that said, I felt that Saturday. I felt connected. I felt like I was walking for every blessed soul with designer genes. I felt like, even if we didn't have Rhys, I would have wanted to be there.

And yet, the love still bleeds most deeply for my own kids...and I'm okay with that.

So I walked for my boy. My beautiful blue-eyed man who slept like a baby the entire 5k. 

Team Rhyser...with a very sleepy Rhys

I love adjectives, but words fail me know.  It was...beautiful.

Philadelphia sky-line in the distance.

I thought of what I wanted it to be in my mind. I wanted happy. I wanted togetherness. I wanted a celebration. I wanted to feel at peace…included in a community that knew EXACTLY how I felt.  Not family sympathizing with me.  I wanted to be with those people who just know.  And I was. Finally, I wasn’t the only mama with bags under her eyes.

I was nervous on the way to the walk…so nervous of what I would see, what I would say, how I would react to other Angels.  But it was amazing.  It felt like a big freaking party where life is celebrated and the future is welcomed.

And I didn't know walking along the Cooper River in New Jersey,  just post-sunrise with family, celebrating the magic of the missing 15th and jammin' to the Black Eyed Peas was on my Bucket List, but it is now...followed by a big fat CHECK.

550 people walked!

Thank You! Gracias! Merci! Takk! Dziekuje! Spasibo! Danke! Do jeh! Ahsante Sana! Dyakuyu! Xie_Xie! Wado! Skee! Hvala! Tack! Muito Obrigado! Gratius Agimus! Kamashamaida! Arigato! Mahalo! Toda Raba! Grazie! Efharisto!

 

No matter how you say it...thank you to everyone who supported Rhys and our family…in person, in spirit, in donations.  Researchers are making leaps and bounds and this truly is where someone's investment can really pay off and they can see the results  Three cheers for the Village...you guys continue to amaze me.

Conflicted instincts

It is good to be home.  I have become far too acquainted with the innermost working of St. Luke’s Regional Medical Center…

Papa is home recovering and Rhys is too. We are so thankful our patients are doing better.   

Rhys’s surgery went fast.  Recovery wasn’t very fun.  No mom should have to see her baby cry like that.  All I could think about is how horrible I was for having put my child through an operation to put a HOLE in him...Who does that?  I miss his tummy…I want to blow on it and kiss it, but not for awhile.

I know the g-tube is a good thing for him.  But as I sat alone in his hospital room, reading an issue of Real Simple magazine…I flipped a few pages in and stopped at a stunning image on page 6. The photo was  appropriately real simple--a cherubic toddler curled against the bare skin of his mama and her arm wrapped protectively around him--but the emotion conveyed is deep. An Agatha Christie quote is typed beneath it: "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path."

I love the last part--"crushes remorselessly." So badass, so fierce and yet an emotion present the moment we flip that pregnancy test over to find two pink lines. I love that this love and passion is not earned. We don't have to do anything to get it. It's just there the minute we know there is another life to love...instincts.

I couldn’t stop thinking about this picture because my instincts have been so conflicted this week.  On one hand the surgery is to help Rhys…get him the adequate nutrition he needs.  On the other hand shouldn’t a mother’s instinct be able to help navigate through the feeding battle to find another way to get my child what he needs?  

I rely on instincts a lot--maybe more than I should. But I've found the most valuable truths I've used in guiding my parenting choices are not snippets I've highlighted in books or pieces of advice passed along from more seasoned mamas. It's the nuggets of truth that are within--things I didn't even know I knew. I know how to love my kids. I know what they need, and for every chapter I've read about the five S's of calming a baby…they've got nothing on the natural rhythm of my body that instinctively rocks and sways and soothes my chillins into a sleepy trance.

There is a certain confidence you acquire when you discover your instincts are worth trusting…this comes in handy with Rhys's specific needs.

I will always be challenged to ensure I'm doing my part--reading the research, scheduling the appointments, utilizing the resources available to us.

I believe in Early Intervention. I'd lobby on the White House steps for more funding and education and programs that will give my child an advantage. I love to watch the progress of Rhys's physical therapy and I look forward to hearing McCall and Bodie’s school stories of vowel sounds and sentence structure. But I find the most comfort and hope in the fact that at the end of the day, I am the mama. Not therapists or teachers or child-rearing gurus. And joined by our village of loved ones, our children will thrive.

Special needs is so less daunting with this truth.  So I guess I’m at peace with the tube.  I kinda have to be, right?  I still miss the little tummy I know and love, but this one now is fuller than it ever has been.

So I will continue the cycle of high expectations, hard work, lots of love, and gratitude for every milestone each of our children make…and there are lots of them to come.  

With that short sermon out of the way, I'll move on.

While there has been an obvious decrescendo in events the past couple days, my body is welcoming the lull in activity…sitting and relaxing with my baby boy while brother and sister are “in the mountains” with Papa and Sue Sue.   

I told Rob I was going to get so much done today…but I lied.