I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, July 31, 2009

Updated Video

I added a few more pictures - this update is more so for my 'keepsake' purposes - not necessarily a new post!!

Tuesday, July 28, 2009

Happy 5th Birthday Zachary

I'm not quite sure how it's happened, but sometime while my head was turned, Zachary suddenly turned 5. So many mixed emotions accompany today. I'm so happy, yet I'm somewhat sad that I no longer have a baby. I am so proud of Zach and the little boy that he's becoming. He's smart, he's caring, he's sweet, he's funny, he's compassionate - he's my heart, and he's my joy. You always hear mother's say when they're expecting their second child that they don't know how they could possibly have any more love to give - I was no exception. I thought with all of Alex's needs, how could I possibly devote any extra time or love to another child. Oh, but you do! And the love that I have for my children is so intense, yet so different.

When we were going down the mysterious medical diagnosis roads with Alex early in the beginning, Aaron and I had discussed not having any more children because Alex was going to need so much from us. We needed fertility drugs to get pregnant with her, so we figured we really didn't have to worry about it until if and when the day came that we changed our minds. But right at Alex's second birthday, God decided it wasn't going to be up to us and we were scared and elated to find out that we were pregnant. My pregnancy was uneventful (but it was the same with Alex) - I didn't let the doctors run the tests they wanted to rule out any anomalies - they weren't able to diagnosis Alex out of utero, so why should I take any of the chances running them on this baby when it wasn't going to change anything.

Three weeks before my due date we had our routine check-up and the dr. said that the baby was 'big' and breech. She scheduled me the following week for a c-section. We got to the hospital at 6AM to get ready to meet the little guy we still hadn't named. I could feel the baby kicking and knew that he wasn't breech and asked the nurse to do an ultra-sound. She patted my arm, told me I was there for a c-section because my baby was big and breech and there was no way that he had turned. I love my OB and I talked with her...she called the nurse out into the hallway where I can only guess she said something like...mom's a little sensitive...let's just do the ultrasound to appease her. So they roll the ultra-sound cart in, do the ultra-sound and low and behold, the baby isn't breach! They start a pitocin drip and at 4PM, I deliver Zachary Joseph Hayes, naturally (well, with an epidural!). One catch, right after I delivered Zachary the dr. holds up his umbilical cord which had a true knot...

If Zachary hadn't been delivered that day, almost three weeks early, more than likely we would not be celebrating his fifth birthday today. I do not take his birthday's lightly, and I cherish every day that I have with him.

I think if you ask him he will say he had a pretty good birthday! He had a party with his friends at Pump It Up on Saturday, he had a party at school today and we had a party tonight for him with family and a few friends.

Part of the reason I haven't blogged in over a week is that I was working on this video montage of him....it's pictures of him from birth through this morning. I take a million pictures, so it was really hard trying to condense five years into a few minutes.

Happy Birthday my Sweet Boy!

Tuesday, July 14, 2009

The Woodrum Family

Sometimes I can't blog for a week and today there's two posts in one day!

It might be that I sound like a broken record, but I've said on numerous occasions that Aaron and I have been blessed to have met some of the best people in our lives because of Alex. The Woodrums are pretty high on that list. Dara and I met a little over four years ago online on an Angelman Syndrome Forum that is global, only to find out that we lived miles apart. Dara and Jerry have four girls, and their two youngest girls, Jule and Jenna, both have Angelman Syndrome.

We met in person and hit it off immediately. They have become our best friends. We have gone on several trips together and have spent countless hours at each others homes. Jerry is probably one of the kindest men I know who will do anything for anyone, and never expect a thing in return. Dara is probably the most knowledgeable, even tempered (I don't think I've ever seen her angry or frazzled!), best listener and friend. We also share the same love for wine! :) Jule, who is 8, and Alex are 'best friends'. Whenever they see each other, Jule gets as close to Alex as she can and the two of them just stare at each other, make noises back and forth to each other and just laugh and laugh. Having two Angels is hectic beyond words, but they always have a smile on their face, and they are always there for you when you need them.

Below is their video from the Angelman Syndrome Awareness walk we did in May. The video was too beautiful not to share. Raising children with this syndrome can be so challenging, but this video truly captures the love and joy that they bring into our lives and all those that meet them.

More Sitting and A Busy Weekend!

Alex's sitting is getting stronger and stronger! In this video, she's not only sitting independently, but she's using her hands to activate her piano...umm, huge!!! :)

We had a very busy weekend - Saturday we had a surprise HALF birthday party for my friend Christy - her real birthday is December 25th so a few of her friends decided she needed to have a celebration all to herself! If she had a clue about the party (which we don't think she did), she played it off very well!


Me and Christy

Sunday we spent the entire day at my parents house. My Aunt (and God Mother) and Uncle were in town from Long Island, NY. They have never met Alex or Zach before and it was very special watching them meet. My Aunt and Uncle are the sweetest souls - and my Uncle is probably the funniest man I know. My entire family was there - we ate, laughed, played cards, visited and had an awesome day. I wish I would have thought to take pictures while the entire family was there.

Zach loving on his Great Uncle Mike

Zach loving on his Great Aunt Grace

Zach and Uncle Mike playing cards

Mom and Aunt Grace

One last picture - yesterday I was cooking dinner and Zach said, hey Mom, look at me - I've got glasses like Sissy....

Being Silly!

Thought the picture was too funny not to share! :)

Friday, July 10, 2009

My Date With Zach

Since it's been a rough few weeks at the Hayes House, and Zach is obviously craving some Mommy time...I decided to take Wednesday off from work and have a Zach and Mommy day. We went to the pool with our friends Christy and Murphy and had the best day. We were at the pool for over 5 hours and Zach and Murphy had a great time swimming while Christy and I had some much needed girl time.

I swear God knew what he was doing when he gave me Zach. That boy is the light of my life, and my greatest source of joy. He has an old wallet that my dad gave him over a year ago. Inside the wallet, he has a badge - just like his Daddy...an expired credit card, just like his Mommy (ok, so mine aren't expired, but whatever!), an appointment card for Alex's neurologist (just like Mommy carries), and a crisp one dollar bill that he got from his PaPa. So we're at the pool and Zach whips out his wallet, which I did not know he brought with him. I make a joke and say, "Zach, you're on duty today?", to which he replies under very quiet breath, "Shh, Mom, I'm undercover today!".

We had our lunch and then Zach announces that he's going to go to the snack bar. So I told him, OK, let's go, to which we replied, "Uh, Mommy - I'm a big boy now, I have my own money, and I don't need you to come with me". Hump....my little man is growing up way too fast! So I said Ok, you go by yourself and I'll wait here (of course I didn't, and hid behind a column and watched his every move, with my camera). He was SO funny. He waited in line with the "big kids", pretended to actually try and read the posted menu, and got to the front of the line and told the person at the concession stand that he would like to "purchase" some cookies. She told him that would be one dollar, to which he promptly replied, "Oh, I got that", opened his wallet for all to see his "badge" and whipped out his dollar bill. The look on his face when he walked away was priceless and while I wanted to just crack up, I had a reality shot at the same time that my little man is in fact, growing up :(

Zach and Murphy

Going for a swim

"Watch Me, mom!"

Zach and Murphy "Going for a tan!"

"Hey, it's first time here alone, what should I order?!?"

"I just paid for my first purchase, alone!...who needs Mom?!?"

An independent boy and his cookies!

Murphy and Zach playing beach towel Candy Land

After we got home Zach and I played Frisbee in the backyard, then tag, and then we took turns on the swing. Afterwards I put him in the shower, and as I was closing the door, he put his hand up to stop me from closing the door and said, "Mom, thank you so much for a great day, you're the best mom".....:) I swear he could have asked for a pony at that moment!!!

After I got him settled, I left for my "Mom's and Margaritas" support group, where I got to hang out and talk with other moms who face what I do on a daily basis...a real bunch of incredible ladies....it was a great day!!!!

Tuesday, July 7, 2009


Dare I say I think the house might be healthy again?!? Last week Zach still was not doing any better and was still running high fevers at night. So Aaron took him to the pediatrician on Wednesday and it turned out that he had Mycoplasma Pneumonia. Since it was bacterial he started on an anti-biotic and knock on wood, all is good at this moment!! Alex's nurse called in sick for the first time in four years because she had caught it as well. Something I haven't had a chance to post is that my best friend Dana from New York moved here a month ago and has been staying with us, and she finally succumbed to the germs on Thursday as well! So whatever the bug was, it was a potent one at that!

Alex is doing really well. Last week I took her back to Hope Therapy so that I could get a refresher course on working with her at home with the cage equipment we have. I'll try and take some pictures or video soon for a better visual. We've been working with her pretty much every day and she knows exactly what exercises are coming next based on how I start hooking her up and basically just starts doing them on her own. She's also been doing really well with her independent sitting. I took this video after she had already been sitting independently by herself for over 4 minutes - so all in all she sat for over six minutes unassisted!

We had our Speech Therapy session with Beth yesterday and unfortunately, we wont be seeing Beth as our therapist after the summer. I'm bummed because I truly love working with Beth and I'm not sure what our options are going to be after she leaves. Alex has been in therapy atleast 2-3 times a week since she was 13 weeks old. So I think I may take a break from Speech for a while and just work with her from home. I'm at every session she has, so I'm really comfortable in knowing what I need to do to work with her. Her attention yesterday was amazing. Her eye contact was contstant and she was so focused on what she was doing. We switched from using single switches to a Go-Talk device that has four options. Alex gets to pick what she wants to play with and gets to hear what she selected once she hits it. She worked with the Go-Talk for the entire hour we were there and was so consistent. I'm really proud of the progress she's making.