Tag Archives: Down Syndrome

Giving Zack and Nella a chance…

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… to pursue their dreams.

… to push past boundaries.

… to prove people wrong.

… to do the things that makes others get those sad eyes because they think my son and a beautiful stranger friend named Nella can’t do them.

 

Another Mommy blogger with incredible talent as a writer, photographer and most especially, momma, included Zack in her recent post in honor of her daughter’s upcoming first birthday.

Please check this out.

I know money is tough. I know this isn’t JUST for Zachary. But it is, really. A donation to the National Down Syndrome Society helps all of the Zacharys, all of the Nellas. It helps their parents and their families, too.

My favorite Christmas present this year came from my cousin’s girlfriend, whom I haven’t even met yet. She donated to NDSS in Zachary’s honor. We have been so moved by that that there are still no words to express our sincere gratitude or amazement.

Kelle gives me  hope every week with her raw, honest voice and a peek into her world. A world that, like ours, included a diagnosis of Down Syndrome this year. A world that has been made better for it.

Thank you for those who  have supported us on this journey so far.

Thank you to those who ask questions and find answers.

Thank you to Nella.

And to Zachary. You make me a better momma, a better person.

The days my son has a weak Momma

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Every now and then, I slump a little in my seat, smile a little less, lay down my SuperMom cape and sluggishly lift off my armor.

And all that remains is the weak Momma.

She doesn’t come out very often. In fact, Weak Wendy is almost unheard of around here anymore. Whether that’s good or bad, I’m not sure. But I’ve gotten so used to the tough-as-nails me that those other moments come as such a slap in the face I’m overwhelmed; I’m caught off guard.

There are the moments where just looking at pictures of other babies on Facebook or hearing other moms-to-be talk in anticipation makes me bitter. No, bittersweet is more like it.

I look at Scott in these moments and want to scream. Why are you handling this all so much better than me, Mean Mommy yells from inside that Deep Dark Place.

The hardest for me are therapy sessions. Funny, huh? The best thing we can possibly be doing for Zack; his best chance at capturing all of the dreams this world threw on him when he was still in utero, and I sit there, nodding at new exercises and watching every move, blinking back tears and just trying to breathe past the knot in my throat.

But then.

Then.

 

 

But then there’s a nap together on the couch some lazy Saturday afternoon. His hair tickles my nose and my cheek and I listen to him sigh in a dream.

 

 

 

 

 

There are the smiles from both sides during leg lifts and belly time that make us both forget that what we’re doing is work. And those giggles.

 

 

 

 

Then there are the times when I watch Scott with him.

I can feel the love — the warm, warm combination of their two souls radiating through the room — and I am OK.

 

 

And the armor and cape come back out and Super Momma returns. All is well and I can move on.

But I still feel so darned guilty for feeling weak in the first place.

 

At church this morning, Zack had a dirty diaper, didn’t want to take the nap he needed and then got the hiccups. I left Scott in the pew as I took care of the diaper and paced back and forth in the lobby for about half of the service. I listened to every word from our pastor, taking it all in while breathing in the scent of my baby boy.

A congregation member came up to us just then, admired Zack and then told him this:

You bring so much joy to your mom.

 

Yes.

Joy and strength.

Therapy Thursdays

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Zack has a couple of ladies that visit him every week or two. As his mom, I’m not too concerned about my Ladies’ Man. You see, his female visitors are therapists from our local Early Intervention program.

Our physical therapist Kathleen comes every week. Our special instructor Sheri visits every other week.

I was so nervous about Early Intervention, which, by the way, I knew nothing about prior to August. EI is a free public program sponsored by our local MH/MR office. It started with a consultation meeting in which officials from EI determined our eligibility and gave us paperwork to fill out. Then there was a meeting to see in what what areas Zack may need extra assistance. At two months old, Zack was measuring about on par for his age, with the exception of a slight possible delay in gross motor skills.

His Down Syndrome diagnosis however makes for an extra need for a bit of extra help, if you will. It can’t hurt, right.

It was hard for me to watch the EI officials studying Zack that first time. I knew they were looking for delays, for trouble. I knew it was just them doing their job and helping Zack out in the long run, but that was my baby boy’s actions they were scrutinizing.

Moreover, that was his future they were debating. They were seeing the signs of a syndrome I was still frightened to accept at that point. They were holding him and staring at him like he was a science experiment and it hurt my New Mommy Soul.

As we started visits from Kathleen and Sheri, however, I soon changed my mind. These ladies are helping him. Every exercise Zack’s support group — me, Scott, Grandma, friends, therapists… — do with the dude is a step closer to “normalcy,” a smidge easier his life will be as he gets older. It’s a hard, cold truth that stares me in the face every Thursday.

But, I love these ladies.

They come in, the second or third or fourth stop on their day of traveling a long coverage area and dealing with traffic, pets, annoying parents and upset babies. You would think it was their only stop for a month, though, or that Zack was their own child.

 

They get the work done, but in a way that makes it so enjoyable and fun for Zack. The smiles while he lifts his head or spends time on his stomach or grasps a toy doesn’t make all the muscle-hurting stretching so seemingly cruel anymore.

The ladies have nicknames for our guy and sweet voices they chirp those names in, all the while loving him so sweetly.

They cheer his accomplishments and sometimes surprising achievements and make our entire family feel like a million bucks.

And even our homework comes out like a fun challenge. (We have weekly assignments of what to work on and how our progress on certain goals is going)

Our hour visits from them fly by and a part of me is sad when they leave.

Will I be able to make as much of a difference? I ask myself as they march down our front steps, ready to make another family feel special.

Are we doing enough? I always ponder that one. And sometimes, Do I worry about it all too much? Is that even possible?

I’ve realized that all I can do is my best. My best for Zack, my best for myself, my best for my family.

In a perfect world, we wouldn’t have to worry about leg stretches or Zack’s ability to follow objects and noises with his eyes. We’d play or we’d be lazy and that’d be the end of it all. It wouldn’t matter.Maybe I could snuggle with him more and stretch his limbs less. Maybe I wouldn’t even have to think about any of it.

But as long as I live, I have to know that every day I did what was the absolute best for my son.

I don’t ever want to ask

what if?

Answers

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Scott will laugh at just how much of an understatement this next sentence is: I am a really emotional, sensitive, deep-thinking person.

I ask a lot of “what if” questions and I ponder the past — A LOT. It’s just always been in my nature and I find myself going through ebbs and flows of where it takes a hold of me and I’m even more sentimental.

Zack just interjected from kicking his arms and legs out on the brightly-colored blankets on the floor and said “Ah-bah. Gah-ah. Bleeeeee. Meh. Bah!” (I wonder if he agrees?)

Anyway, the recent visit from my sister Shelby and brother Shamus (you’d never know we were an Irish family, right?) prompted me to bring out one of the many large boxes of photos taken by my mother during my childhood. I probably acquire two or three of these boxes every time I see my dad, who is as sentimental as I am, although with more packrat tendencies. I’ve received my mom’s old wallet, a broken watch, her drivers’ license and an envelope filled with my baby teeth, my mom’s lovely script in purple ink across the top. I appreciate it, but I would rather cherish the special or unique (or sentimental?) items of hers — things she made that I can decorate my house with or things specifically written for or about me, for instance.

Shelby and Shamus and I share a biological father (not the man I call my dad) but had different mothers. We never had the chance to grow up together or share in life’s ups and downs — until now. We’re making up for lost time.

There were envelopes filled with photos of people I didn’t recognize in some of my Mom Boxes and I decided to take a stab at bringing them out to see if my brother and sister could fill in some of the blanks.It was great! Shelby poured over the photos, writing names and family connections on the back of several of the photos and sharing stories of birthday parties, road trips and Christmas presents.

There was a point in my life, not that long ago, where I thought I didn’t want or need to know the Irish side of my family. But now that I’m a mother, I feel I owe it to Zack to learn all I can about one-quarter of who he is and where he came from. It’s not all pretty, but it’s all family, all answers.

Those old wounds are healed and sealed with hugs and kisses from my brother and sister. We look alike, we talk alike and we have many things in common. Answers again!

Among the photos was a school paper of mine from 1992. I was in second grade — an 8-year-old on the verge of losing her mother and lost in herself. It must have been an assignment to tell about yourself and among my being “funny” and a “nice girl”, I wrote about enjoying the mall and wearing a headband. But two lines really struck me:

Line One: “I am half Irish.” How proud I must have been to be that ethnicity, to have that family, despite not even knowing my brother and sister at that point.

And then the second-to-last line: “sometimes scared.” Imagine an eight-year-old girl who describes herself as being scared.

I overcame that fear, although it took more than 15 years to do so. But then, the day I learned for certain that Zack had Down Syndrome, I felt that great fright creeping up through my throat all over again. And just like I would have used “always scared” as an adjective for 26-year-old Wendy, feeling as though I’d never be able to drop that description for words like “happy” or “strong”, here I am, just a few months later, more proud than ever and more comfortable with being the mother of a baby with Down Syndrome than I ever thought possible.

Time heals all wounds.

I am no longer that scared little girl, not knowing who she was.

And I am no longer the frightened new mother, afraid of who she would become.