Tuesday, December 10, 2013

Will Joey Ever Walk? A Christmas Prayer

I have had our Christmas cards for over two weeks, but every time I sit down to try and write this year's Christmas letter I find myself too sad, too conflicted and too confused to talk about the past year. The problem is that each year I start with last year's Christmas card and then write about the changes the next year has brought. 

In 2011 Joey was not crawling and had just started sitting up at 18 months. 

In 2012 Joey had finally started Army crawling and I wrote about all of our high hopes that 2013 was going to be the big year that he started walking and that we would all go to Disney World to celebrate him being a new walker.

We knew that Joey having Down syndrome would mean that he might face additional challenges in his life. Unfortunately, it sometimes feels like an inordinate amount of those challenges are occurring in the first 3 years of his life. The surgeries, the eating issues, the eye issues, the verbal issues and the gross and fine motor issues. At times it can honestly seem like too much. At times it just seems unfair. And not unfair to us. Unfair to Joe. There are days I just say, "Why, God? Why, Joe? Why can't he just get a break? Why can't something be easy for him for once?" 

And then I have to pause and take a deep breath and remember that there are some things that do come to Joey easily. Like his beautiful smile and two perfect dimples. Like his incredible interpersonal skills and determination. Like his easy laugh and his super strong and warm hugs. To get a hug from Joey is to feel the arms of an angel around your neck.

I wouldn't be human if I didn't tell you that part of it is my problem. I want Joey to start walking and standing up on his own because HE IS HEAVY. And long. And three and a half-years-old. He's almost 33 inches long and weighs about 34 pounds. I'm only 64 inches tall, so when I hold him he is almost half of my height. What I am trying to do is to enjoy this time, live in the moment and enjoy that he still needs me and that we do spend so much precious time with him in my arms. That is what I try to focus on- enjoying the moment - our moment - for what it is. It's just that the in and out of the car 5-6 times a day and the up and down of lifting him up into chairs and up and down stairs can sometimes cause me to be quite weary. It just does. 

The other part is the yearning part of me that wants and longs for Joey to run alongside his big brother. The part of me that wants and longs for Joey to be able to keep up with his preschool classmates and friends. The part of me that wants and longs for Joey to have the independence he seeks every day. 

This part is hard. He has an agenda and he has places he wants to go and adventures he wants to have. He is such a 3-year-old. He wants what he wants when he wants it and how he wants it. His frustration has started reaching new levels. He has been acting out. Sometimes it's hitting. Sometimes it's yelling. For the most part it is typical 3-year-old behavior, but we also know he has extra frustration due to his verbal and motor delays. 

Will Joey ever walk? Yes. We know he will. And in the meantime we are doing everything we can to help him get there. He is now doing Horse Therapy and Swim Therapy alongside his regular PT, OT and private Speech therapy as well as the PT, OT and speech he receives at school. The Horse Therapy has been life-changing for Joey. His core strength is building. His confidence is building. He talks about Rufus the Horse all week long between his 30 minute sessions. When he is on Rufus he is like a new boy. He has no fear, but pure joy. For Rufus and the amazing friends at Victory Gallop we are so very grateful.

Since last year there IS progress. He has advanced from Army crawling to 4-point crawling (on his hands and knees). He has started pulling up to stand at spots where he can hold onto something. He can walk 10-20 feet if you hold his hands. This is progress. And this is what Tom always reminds me-- Joey always has made progress. He keeps moving forward. At times it can feel like the most painfully slow process ever, but it is always progress.

In the meantime, not once has Joey's older brother Tommy ever asked me what is "wrong" with Joey. He doesn't see anything wrong with Joey. Tommy doesn't care that Joey can't walk, yet. Tommy treats Joey just like any little brother. He wrestles with him. He pulls him down to the ground to roll around and play. They fight. They laugh. They hug. They hit. They are are magical all year around in the fierce love they have for each other. Every morning when Joey wakes up he says, "Brother." His name for Tommy. The only thing he will call Tommy- Brother. 

Tommy in turn spends his day trying to convince Joey to play with him. On the way home from school the other day he said, "Mom, everyone in my class loves Joey." 

I teared up. I swallowed and said, "That's so nice, Tommy. You know they love you too!"

It's a balance, but they don't seem to notice and that is all that matters to us.

Our hope and prayer for the next year is that perhaps he could go for an entire year without a single surgery or hospitalization. It seems that every surgery and every hospital stay has just pushed back his progress that much more and has caused him to have to work that much harder. 

Our Christmas Prayer for this year is that Super Joe will start walking in this journey beside us. As much as we love holding him in our arms every day, we pray for him that he achieves this incredible step forward.

What is your Christmas Prayer this year?

We hope it is answered this year.

Wednesday, November 27, 2013

Am I Thankful for Down Syndrome?

Am I thankful for Down syndrome? Every single day. Joey came into our world with a bang that has not stopped. And at the end of the day we are still in a state of amazement that he ever made it at all. Was I always thankful for Down syndrome. No. Not at all.

Photo by Nat.

Initially, we found out around 12 weeks into our pregnancy that Joey had fetal hydrops- fluid surrounding his body as well as a septated cystic hygroma that looked like a halo around his head that was also fluid.

We were told that probably due to a heart defect and a chromosomal variation (we no longer refer to Joe as a chromosomal abnormality) the fluid would continue to surround his body and brain and that in all likelihood, Joey would not survive the pregnancy. We were told not to expect the pregnancy to last past 20-24 weeks. 

We were told he had about a 1.9 or 2% chance of making it.

When we were told that news, Down syndrome was the last thing on our minds. The next week I underwent a chorionic villus sampling (CVS) testing to try to learn more about what might be causing Joey's complications. A few days after that testing, we were told over the phone by a geneticist in another town that our baby had Down syndrome.

Again, Down syndrome was not really on our minds. Instead, we were dealing with the idea that our baby boy would not survive. We were coping with these foreign and frightening medical terms like "septated cystic hygroma" and "fetal hydrops" and "congenital heart defect".

It wasn't your "typical" pregnancy. And by typical, I mean that most women who are pregnant don't see a psychologist on a weekly basis in addition to visiting the high risk fetal medicine OBGYN two to three times a week. That's not what I saw when I viewed my other friends' pregnancies. At times I was angry. Other times I was depressed. Sometimes I was envious. I would see other pregnant women and wonder why we had to be living through this hell in which our little baby was given virtually zero chance of surviving. 

I think that sometimes it takes going all the way to those very dark, dark places to realize what gratitude means. To understand how fortunate and blessed your life is. It is easy to get caught up in a day to day existence of going through the motions. But sometimes in our lives we have a journey that is so shocking or so stressful or so difficult that it sharpens our very views of the world. It's like when you are at the eye doctor and he keeps flipping the lenses asking which one you see more clearly through. Joey brought the most clarity I have ever known in my life. For that my gratitude is unending and eternal.

Photo by Nat.

Once we had made it past week 20, then week 24 and finally week 28-- that was when I really started having more faith that this little fighter might actually survive.

Around week 24 his congenital heart defect was confirmed and we were told that he would more than likely need open heart surgery.

It was after this point that I started to cope with Joey's diagnosis of Down syndrome. Cope, you ask? Yes, cope. 

The point of this blog is to raise awareness, to be a resource for other parents and to try and take away the fear that new parents might have when they find out their child has Down syndrome, but long before I could try to do my own advocating, I had to face my own fears and I had to learn to cope and ultimately accept Joey's diagnosis. 

My version of coping meant meeting with a therapist and discussing all the possibilities of this pregnancy and what it would mean to raise a child who would have special needs. My version of coping meant reading every single book and blog on Down syndrome that I could find. My version of coping meant grieving hard and deep for the better part of the pregnancy. My version of coping meant meeting some other parents and learning about their journeys. 

Photo by Nat.
Looking back, much of my journey coping and grieving about having a child who had Down syndrome seems so very selfish. Much of it seems like a waste of time, but it was a journey, a process, and it was my process. The part that feels so selfish is that so much of my worry centered around me- how would I take care of a child with special needs? How would I find the patience to handle a child who might move at a more leisurely pace? How would I feel about how society treats my child? How would I feel if someone made fun of my child? How would I feel if my child didn't fit in at school? How would I deal with all the unknowns? 

Many of my fears were fears for how Joey would survive in this cruel and sometimes dangerous world for people with disabilities, but so many were self-centered.

Joey riding Rufus at Victory Gallop.

Despite all of my preparation and despite all of my reading, I truly had no idea what Down syndrome was until I met our baby boy. I had no sense of just how "normal" Joey would be. I had no understanding of how much this little person would make us laugh. I had no idea how much he would bring our family together. I had no idea that we would all become his biggest cheerleaders. I had no idea that things like horseback riding would become one of the best parts of our week. I had no idea about the other families and children we would meet along the way. I had no idea about how much the world would open up and how much more empathy we would have towards all individuals with disabilities.

I had no idea how much clearer and sharper the important things in life would become. Or how much easier it would be to see and appreciate those things.

I had no idea that Down syndrome would end up not being something to mourn and lose faith and time over. I had no idea just how much Down syndrome would change all of our lives for the better.

For Down syndrome and for having a miraculous little boy named Joey, I am forever grateful.

Do you have something in your life that has helped you see the important things more clearly? Something to be eternally grateful for? I hope so. 

Photo by Nat.

Happy Thanksgiving 2013!

Wednesday, November 6, 2013

Thank You, Sephora!

They did it! Sephora removed the Kat Von D Painted Love Lipstick titled "Celebutard"! Tweets, blogs, Facebook messages and more added up to one of the quickest responses I have seen thus far in this journey of trying to spread the word to end the word.

Kat Von D - Painted Love Lipstick 

Painted Love Lipstick

ITEM # 1266501 SIZE 0.11 oz
COLOR Celebutard - nude peach beige

If you visit Sephora.com there is no longer a trace of the shade so insensitively called "Celebutard". . .


Painted Love Lipstick

ITEM # 1085612 SIZE 0.11 oz
COLOR Lolita - dusty rose

Is it exhausting even trying to figure out which battles you choose and which you don't? Absolutely. What's even more exhausting is the passion with which so many people have in hanging on to the word "retarded". This is just one of many, many battles, but this one has a happy ending, an ending that made me feel like doing some holiday shopping. 

MERRYCRAZYSAMPLEBLITZ. Dash away with 8 free samples, packed in a keepsake basketweave clutch. Choose 1 of 4 holiday sets. Free with online purchase of $25 or more.* Use code BLITZ. SHOP NOW

If you have any beauty needs-- check out the fun deal Sephora has right now- with any $25 purchase you can pick out a fun little bag of goodies. 

I'm stocking up on one of my favorites for everything from chapped lips, to raw little, runny noses-- Joey loves this stuff.  I use it on his cheeks when they get chapped in the winter wind and on his nose when it's red from being sick.

And here is another awesome stocking stuffer--


Vanilla Grapefruit Fragrance

ITEM # 1005214
0.33 oz Eau de Parfum Rollerball

It's nice when a story has a happy ending, isn't it? Happy Wednesday and thank you again, Sephora for listening to your customers, parents, families and everyone who wants to shop in a world that respects all of our differences.