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, October 30, 2009

Dear Abby Article

So there are many, many, many times that I sometimes feel inadequate that I can't be this super mom/woman that I want to be and commit to all things to all people. Today my friend Dara shared this article from Dear Abby and for some reason, it really made me feel better. I am being a super mom/woman to one very special little girl. There will be times when I'm sure Zach might feel a bit slighted despite all we do to make him feel special in his own way, but hopefully we talk enough about Alex's special needs and surround him with lots of other kids with special needs needs that he will never be the person writing an article to Dear Abby!!


DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fundraising with her and the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack.

Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center around our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc. The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do. -- SPECIAL-NEEDS MOM IN ALABAMA

DEAR MOM: I heard from the parents of many special-needs children who echoed your sentiments. And you're right -- it does take a very special parent not to crack under the stress. Read on:

DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I can assure you, that woman is already "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need.

Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box).
The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry, and a long, comforting hug. -- CINDY IN AUSTIN, TEXAS

DEAR CINDY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly you're sobbing again.

Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, many of these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit.

There is also the problem of not being able to get needed services. In many states, once children are out of the school system and on the waiting list for adult services, they sit and languish at home with NO services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you must relocate, you go to the bottom of that state's waiting list.

Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research. -- SONJA IN COLORADO

DEAR SONJA: In this time of draconian cutbacks everywhere, I hope our politicians will direct their thinking away from divisive politics and being re-elected to what must be done to help our most vulnerable citizens.

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at www.DearAbby.com or P.O. Box 69440, Los Angeles, CA 90069.

Thursday, October 29, 2009

School Pictures

I can't believe how big my babies look.

I think this will be the first year that I'm not going to have Alex's pictures redone. I love how it's a profile picture and think it's just a beautiful picture of her.

Then there's the big kindergartner who insisted on wearing a shirt and tie for his pictures (anyone remember Michael J. Fox on Family Ties...aka Alex P. Keaton?!?) I do think I will probably have his pictures retaken - it's definitely not his usual smile, and holy close up!!!

Tuesday, October 27, 2009

A Very Busy Weekend!

Definitely a whirl-wind weekend!!!

Friday morning started with my sister getting married! It was a small ceremony in the backyard that was absolutely beautiful. I'm so happy for the both of them. Welcome to the family Shane!

The Beautiful Bride!

Mr. and Mrs. Shane Mann!

The Mann/and half the DePasquale Clan!

After the ceremony we had a delicious lunch at the Cheesecake Factory.

The happy couple before they leave for their honeymoon weekend!

Friday evening I had girls night out. I honestly don't think I've laughed that hard in a very long time! I am so incredibly blessed to have such amazing friends in my life. Aaron and I have such a wonderful support system in the friends (and family) we have and we are truly thankful for each and every one of you. Your love, care, and support mean the world to us.

On to Saturday...we attended a wine gala to benefit the Richmond Hope Foundation, which is where Alex goes for intensive physical therapy. Despite the weather, it was a great turnout and we really had a great night out with friends and family.

There was a silent auction at the gala and I had bid on a hope necklace that I loved - it has a hope charm to signify all of the children that go to Hope Therapy. I placed my bid and then went on with the rest of the night and never went back to look at what the bids had gone up to. But my dad did, and as the auction was about to close, my dad handed me money and told me that he wanted to make sure I got the necklace so he kept bidding for me. I was really touched - thank you Dad!

Jennifer, our respite worker was going to spend the night Saturday. Aaron had gone out earlier that day and apparently got us a hotel room. You might recall I had the swine flu and our 10 year wedding anniversary plans were ruined. He said he wanted to some how make up for it so not only did he get the hotel room, but when I walked in, he had candles lit all around the room, rose petals on the bed, one long stemmed rose on the pillow and a bottle of champagne. After 10 years of marriage and all we have endured, I feel very lucky that he still tries to do things to make me feel special.

On to Sunday...!

Zach had his final Fall Ball T-Ball game and trophy ceremony. He got to be the pitcher, which was pretty exciting!

After the game we went to our friend's the Woodrum's for what's turning into our traditional Sunday night dinner. Jerry and Dara have two daughter's with Angelman Syndrome and Jule, their oldest Angel, and Alex LOVE to spend time together. They are so funny to watch together - they smile, giggle. "talk" and flap their hands at each other. Alex knows when we get close to their house and she gets so excited.

They just got their second English Mastiff puppy, Lanie, that was loving all over Alex - Alex wasn't really quite sure what to make of her, especially when she laid down on her head!!

Probably the best part of the day was when Aaron and Jerry were riding the four wheelers. Alex kept staring at the four wheeler and flapping her hands so I told Aaron he should take her for a ride...she LOVED it! You could hear her squealing all the way down the driveway (which is about a mile long!) It was so cool to see her doing something so typical - and something she was clearly enjoying! She actually held on to the handle bars and was standing up - by herself - as to say let's get this thing moving again!!

It was an awesome weekend!!!

Thursday, October 22, 2009

Quick Post!

Things have been busy (ok, I don't know why I always say that since that's my life!) but knock on wood, the kids have been HEALTHY!! Alex's school had over 100 second graders out with the flu, so I'm so glad that she's managed to escape anything so far. Yesterday she blew me away and ALMOST got to a complete sitting position all by herself. I think I startled her because I started cheering and clapping for her and she lost whatever momentum she had going. I'm praying really hard it wasn't a one time thing!

Zach's doing awesome - loves Kindergarten and now believes he's going to be the next Tony Hawk and is obsessed with skate boarding.

There are a ton of things going on this weekend so I hope to have a new post with lots of pictures by Monday!!

Wednesday, October 14, 2009

Finally - A Fun Post!!!

So after all of our illnesses and adventures the last few weeks, we FINALLY all seem to be healthy!! Last weekend we took Zachary to Paramount's Kings Dominion for some much needed Mommy and Daddy attention time.

We went with our friends Scott, Leslie, and their son Jeffrey...

And our friend Dara and her daughter Jean...

When I was younger I LOVED theme parks and roller coasters, seems the older I got the more chicken I became and opted out of quite a few of the rides...but not Aaron, Jeffrey, Dara and Jean...some of the rides were just too insane for me....here's the crew on the Crypt...I get butterflies just looking at the pictures! :)

Then they headed over to the drop zone...which brings you up 305 feet and drops you at 72 miles per hour...mmm, no thanks!

Zach rode his very first little coaster...

With me watching the whole ride...(and his face really was priceless!)

Turns out he is it NOT a fan of roller coasters! But I have to give him credit, he decided to try one more coaster and rode the Scooby Doo...he was a little on the scared side and I just love this picture of Jeffrey comforting him telling him it's going to be fun and there's nothing to be afraid of!

After the Scooby Doo it was official - he's just more of the bumper car (which he did 4 times!), Merry-Go-Round type of guy!

He did enjoy eating his way through the park...

And navigating everyone through the park, deciding which rides everyone else should go on next...

The park is decorated for Halloween and at 6PM fog machines start running throughout the whole park, which Zach just thought was absolutely cool and would have much rather played in that for the rest of the night if we let him.

Oh....and Aaron made a new friend!

All in all, we had a fantastic day. It was great to be outside on a beautiful day after everyone had been couped up for almost two weeks with great friends!!

Wednesday, October 7, 2009


So....here's a little recap of our last two weeks. Aaron went to his hunt club to clear some land for the upcoming hunting season two weeks ago. By that night it was clear that he had a pretty bad case of chiggers and seed ticks. Four sleepless nights for both of us with his constant itching. Monday I had to take him to the doctor, because he had so many bites, his body had a serious reaction. Uggh!! Thursday comes, and Zachary starts with the pneumonia. Uggh!!! Tuesday comes and I get diagnosed with the swine flu. Uggh!!! I literally quarantined myself in my bedroom for five days because I was scared to death that Alex would get it. So it was totally up to Aaron to take care of me, and the kids. Uggh!!! Friday the school calls that Alex got off the bus in a complete sweat and they think she has a fever so they called Aaron to come and pick her up. We think it was just that the bus had the heater on because after we had her home she seemed fine - BUT we were panicked that she had a fever and the start of something brewing was coming. Thankfully, she was fine. Friday was our ten year weeding anniversary and Aaron (for the first time ever) planned a surprise getaway for the two of us and arranged for his mother to fly in to take care of the kids. I'm still contagious so he has to cancel all of his plans. Uggh!!! Monday I went to the grocery store and was obviously on another planet. The spot in front of me was clear, so instead of backing out, I decided to drive through, only I forgot that I was parked next to a cement light pole and scraped the whole front side of my car! Uggh!!! Today I went back to the doctor because my back was still really hurting and my cough was getting worse. Uggh!!! My doctor put me on the Z-Pack and when I went to fill my prescription the pharmacist said "Man, you guys have really had a time of it". Pretty sad when your pharmacist recognizes you and doesn't even have to ask your name anymore! After I had lunch today I got and ungodly shooting pain in the right side of my mouth...it literally dropped me to my knees and made me cry. It subsided after about 5 minutes, but there was still a dull throb. Later I got Zachary off the bus and we started a game of Sorry while we snacked on Graham Crackers and milk. Ten minutes later I had the same shooting pain in my mouth and was crying when I called my dentist. They agreed to see me but I had to be there in the next 30 minutes....great, the dentist is almost 25 minutes away! So I load the kids up and off we go. After an exam that made me come off the chair and cry and some X-rays the dentist said I had severe nerve damage in one of my teeth and needed a root canal...which I obviously couldn't do since I had both kids with me! So he gave me a prescription for pain medicine and I go in Friday morning for the start of my dreaded root canal. Uggh!!!

So that's what we've been dealing with on top of all of the not so normal day to day drama we deal with!! Oh, and last night Zach's hermit crab "Pinchey" died! UGHHHHHHHHHHHHHHHHHHHHH!

So, if you you're reading this and think you've had a bad day, think again!!!

I just have to smile and laugh at all the drama that has ensued the last two weeks. I can't change it, and it could be worse I suppose. While I desperately want off this major roller coaster ride and wish Calgon was real and could take me away, this is how it is...for better or worse!!! I can only pray my next posts have nothing to do with illnesses or pains!!!

Thursday, October 1, 2009

You Know The Old Saying...

...If I didn't have bad luck I'd have no luck?!? Well, I could probably be the poster child for that slogan. On Tuesday I wasn't feeling all that hot, but I went to work anyway. My neck and back were killing me so I decided to make a Dr. appointment to see what was going on. They asked if I'd had any exposure to the flu, so I told them about Zach being in the hospital and I guessed anything was possible. I was swabbed and about 10 minutes later was informed that I had tested positive for the H1N1 flu. Seriously????

I immediately called my pediatrician and had the kids started on Tami Flu. So far so good, but please say a prayer that Allie Bean stays healthy. She's one of those cases where this flu could be seriously harmful to her given how compromised she is.