I Yam What I Yam!

I was just talking to my Down syndrome Facebook friend, Diane Grover, one of the founders of the IDSC. IDSC is the International Down Syndrome Coalition for Life that promotes how amazing individuals with Down syndrome are. What’s great about the IDSC is that they’re a neutral organization. You will not find bias information on that site regarding pro-life or pro-choice views. This site is focused on pro-women and strives to empower women to make the choice without pressure from outside sources.

In any event, we were chatting about the NDSC Conference when she asked me to pray for a person who landed on the site. Here’s what she wrote:

Okay, I just have to ask you ladies to say a little prayer, or send a good vibe, or great energy, whatever we all do. Someone is on IDSC site right now, after googling with the words “can I do an abortion with down syndrome” So glad they landed on our pretty site!!! Those faces are amazing, and I know they will see how beautiful their child will be!

This broke my heart. It’s the reality that I often block out of my mind.  People truly consider aborting a child with a disability. Take the disability out of the equation and you have a child.

A baby.

My Wes is my world. He makes me smile though my tears when I worry that others may not accept him for his “flaws”. He is perfect, regardless of when he will achieve certain milestones. He will. He will speak; he will read; he will walk, better yet, he will run!  He will do all things that you and I will do, just at his own pace.

I am sad. I am sad that I fear for his future. Yes. I cannot hide that fear because I do want so much for him.

But does that give me the right to chose life or death for him? No. He is an individual with his own amazing personality! I just wish those who felt the pressure to abort would understand that their baby, their sweet little love, is just full of life, emotion, and spunk!

Wes is everything I knew about him from early on.

He is feisty/ spicy – When he’s frustrated, he grunts and growls loudly! Today at infant massage, he wanted nothing to do with it. He made that clear when all the lights were dimmed, the yoga music playing, and the instructor talking softly. I almost felt embarrassed making him go because I know that all he wanted to do was sleep. He wouldn’t carry on, he just spoke his peace whenever I tried to engage him into the massage.

He is active – In utero, he would stretch, kick, and bounce around like a maniac. He is still like that! I can keep that kid under the play yard for an hour and he’s happy as a clam!

He is quiet and observant – My baby, though chatty as anything, will sit and take in the world around him. He did this from day one, and he will engage with you with those bright blueberry eyes. He just drinks in the world. When pregnant with him, he used to hide from my husband’s voice. I know now that he just loves his daddy and quietly takes in every word he says. 

He is a lover – Today Wes couldn’t get enough of his mommy. I held him today more than I have over the past month. My little independent baby just needed reassurance and love all day, and I was more than happy to oblige to his needs.  And when I held him, he would look at me in the eyes. It wasn’t a fleeting glance; it was as if he was asking me to love him even more. Nothing got done tonight, but it was the best night I’ve had in awhile.

So when I see reality slap me in the face… the reality that less than 10% of prenatally diagnosed mothers keep their baby… it kills me.

I could have given up this? This wonderfully spunky doll baby?

It’s painful to think that I had the choice. I had that choice at 18 weeks, and could have still had that choice at 20 some odd weeks. I felt Wes kick me at 18 weeks. Could you do it? Could you feel your baby in your belly kick and say, “No, you’re not perfect; I don’t want you.”

I hope not. No one is perfect.

I have come to appreciate life even more that I have Wes. He is what gets me to look at myself and think about what matters in life. He is what matters.

He may not say “Mommy” at the same time as a typical child would, but you know what? When he does, it will be even more special. I will appreciate that moment more than anything. And when he walks, I will be there rooting him on to go tackle the cats! I want him to do all those things that parents sometimes dread. When Wes can hold a Crayon, go ahead, draw on my walls. Then I know you’re working on your fine motor skills. I may not like this for too long, but seriously – it’s an amazing milestone and I will jump for joy when that little squirt isn’t looking.

In any event, Wes is my world. He is my little man that looks like Popeye when he’s first waking up. Yes, bald head, squinty eyes, forehead creases and a crooked smile. I love him. He is perfect.

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These were a few of my favorite things!

Motherhood, as many of you know, is exhausting.Like, so exhausting you need to have a drink to calm down, turn off and get an hour or two of shut-eye.

It’s so exhausting that even when I do get sleep, I don’t want to do a thing. Not even my favorite things!

Couponing… I miss you dearly; I really mean it! Looking at my diminishing stockpile causes instant panic. “I only have 4 deodorants left, what do I do!?” “I can’t pay full price for deodorant! That’s a crime against humanity!”  It’s so upsetting because I look at my coupon binder in one hand and weekly flyers in the other and just sigh. Rite Aid, CVS, Target… my old friends. Maybe we’ll meet again soon?

Blogging… My brain cells are so fried that I can’t even develop complete sentences on most days. I love blogging so much, but when I am still getting up several times a night to feed Wes, I can’t get a full night’s rest. Forget napping – I try to but either it doesn’t work or I wake up nasty and disoriented.

Here are a few things I need to write about but haven’t:

  • Early Intervention Meeting
  • Feeding issues
  • Speech Therapy
  • Physical Therapy

Facebook… Other than this instance, I do not go on the computer… Facebook, blog, etc. all done via phone. It’s not east to do any of those things on a phone, especially my POC phone. I feel like I am missing out on what’s going on in my social circle. Maybe I will be more active once I get more sleep? Or, do I say “forget sleep” and just exhaust myself even more?

Reading… Whether it be reading a magazine, book, blog – I just don’t do it anymore. Lately when I get blog notifications in my inbox, rather than read it, I delete it.

Biking… Totally impossible to do with an infant.

Take pictures… Well, I take them, I’m just too lazy at the moment to upload them.

Oh, I need to stop complaining. It’s too exhausting.

Newborn Photos!

Recently, my good friend Erin came down to visit me and take pictures of her birthday buddy! Is was an awesome, albeit short trip, full of Chick-fil-A {Preggo Erin’s favorite fast food}, me unknowingly quoting the Bible and Erin laughing at the fact, girl chatter and loving up on Wes. 

If you don’t know Erin, I have to tell you that she is an amazing human being; almost super human! You should have seen that momma take pictures of us while under a table at 7 months pregnant! Let’s not forget that she is a self-employed photographer and momma of two boys at home, so for her to take time to visit us was amazing. {And thank you Paul for lending her to me! LOL}

She’s amazing, and the proof is in the pudding. Enjoy these wonderful photos she took of our little family!

All photos taken by Erin Witkowski of Eve’s Wish Photography.

Wes “before” {February}

 

 

 

Wes “after” {May}

 

 

 

 

 

 

 

 

 

 

 

In other related news, Wes and Grady may become superstars soon.  Erin’s photos of our boys may be gracing the marketing materials for CHOP’s T21 program. Keep an eye out and I will keep YOU all updated! {I’m beyond – crossing fingers – excited!}

 

Twins!

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John at 2 days old; Wes at 5 days old. Looks like I lost the genetics race! That’s Ok, I don’t mind another blue-eyed blonde in the family. What I find hysterical is that Wes has John’s sausage baby fingers; they both have bear paws for hands!

And I’m back!

So, not only was I taking a break to figure out a schedule with Wes, the dang blog kicked the bucket on me and I needed to change the theme to get it to work again. This I found out after hours of trouble shooting that did not work. Bummer – I really liked how it was set up before. I guess I just need to be thankful that I am finally back on! 

I’ve been missing sharing Wes with you all, and so much has happened in the past two week. I tend to blog on what’s happening in the here and now, so I may or may not take a walk down memory lane. It all depends on how much time {and motivation} I have to do so. Motherhood is taking a lot of free time I used to have to blog, but honestly I am enjoying every minute of it!

Can’t wait to share with you soon!

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Mommy’s little party animal! {He’s get it from his Dad!}

 

 

Taking a break… short one hopefully

I’ve been having feeding issues with Wes and I need to take a break from social media for awhile to focus on what is best – Wes.

A child with Down syndrome can be a challenge to breastfeed, which was supported tonight by my new friend Amanda, who was fortunately able to breastfeed her son with Down syndrome successfully for 18 months. Since Wes and I started off rough – not being able to feed him solely without supplement due to low birth weight and jaundice – I was not able to establish a supply early and now I am starting to see my supply drop. It also doesn’t help that Wes LOVES those cheap hospital bottle nipples supplied by Enfamil. Since my girls are no where near the “quality” of the Enfamil nipples, he fights, growls and grunts through feeding sessions. I don’t even know if you would call them feeding sessions because the majority of time is Wes turning red in frustration, pushing me away and and making deep guttural growls. I really mean it; he’s a beast! I knew my little man would be feisty, but man, he is F E I S T Y.

These next few days, or weeks, will be solely focused on attempting to increase my supply so I don’t have to try so hard in the future. Right now I am going through a rough patch because I want to provide the best nutrition for my kid, especially knowing that children with Down syndrome typically have stomach issues. The thought of having Wes solely on formula does not sit well with me because of potential lags in his system. I know that formula isn’t bad, and it won’t be the end of the world if he’s on it. {I have two 4 oz bottles waiting in the wing right now!} However, I need to contribute to at least half of his meals and make sure he eats enough. So, it’s not just breastfeeding being an issue, it’s also getting little guy to be awake long enough to get him to eat. Otherwise, he sees feedings like a smorgasborg. He eats like his great grandpap – all day long.

So anyway, I need to remain a hermit for a little longer until some kind of schedule is made. I am tired of running myself ragged – I just can’t seem to get my S together. If you have advice, please share – I’d love to hear!

WordPress issues

I am having issues posting to my blog this week, so I am sorry for the delay. This post is from my phone … hope it works!

Until things are situated, here are a few phone photos of Wes.

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