Wednesday, February 27, 2008

He will be with you also, all the way, that faithful God.
Every morning when you awaken to the old and tolerable pain,
at every mile of the hot uphill dusty road of tiring duty,
on to the judgment seat, the same Christ there as ever,
still loving you, still sufficient for you, even then.
And then, on through all eternity.

May our children be watched over and may our prayers help ease the families of those who are suffering. Baby Blake is having such a hard time right now... we are all thinking of you, Whitney.
Wednesday, Feb. 27 - I just heard that baby Blake has passed. You will be in our hearts forever, little one.

Sunday, February 24, 2008

Counting My Blessings

1) I am fortunate to know many wonderful WS families, but I am concerned for so many right now; I am just keeping up with the medical updates from Blake, Ava, Ava Jewel, Michaela and a few others who also have surgeries coming up. Brady has eye surgery next week, but these other little ones have some major issues that break my heart. Please send all your special prayers out to my fellow WS families.
2) I am thankful for the progress Brady has made over the last few months. His progress over the last year was made evident when we did his yearly assessment through Early Intervention on Saturday. He is scoring around the 12-15 month range, with Gross Motor being around eight months (thank you, low muscle tone!). Everything is a HUGE leap forward and I can't begin to explain how obvious it is to see how well he is doing. We had to LOWER his crib today because when I went in to check on him, he was high kneeling against it, then in front of me he stood up, ready to hang over the edge! Aahhh!!! (Yes, mother, you were right!)
3) I am thankful for all the little buggers who crack me up... especially my nephews Jack and Adam. Jack is three and acts like all three-year-olds which is funny right there; plus he comes out with such fabulous one liners that he has adults mimicking him. Our latest and greatest line is "What the heck is that, Kerry?" Imagine that coming out of a pint-sized little cherub with a serious tone. Michael and I quote him often!
My nephew Adam is 10 and has such a dry sense of humor, he is funny sometimes and doesn't even realize it. He also cracks us up with jokes he plays on himself. It's nice to be able to hang around with a kid who is entertaining. We often "borrow" Adam so Michael has someone his age to play with on trips and sleepovers. They get along like brothers - fighting one minute, loving each other the next. In fact, when they are fighting, I tell them, "Ok guys, time to kiss and make up!" That usually sets the mood back to normal!
4) I am thankful that my niece Amy is in love with Brady as we are and will babysit. I am completely comfortable with leaving Brady with her for overnights as well. She is an amazing person and I am so grateful she is in our lives and not sick of us yet :). As she has grown older, she has become an amazing woman whom I know will bless others.

Wednesday, February 20, 2008

Play Date

Last Sunday, we were fortunate to have a little gathering with other WS friends. Including Brady, we had five toddlers with WS over for lunch and music class. In the first picture above, left to right is Brady, Clare, Luke, Coleman and Lindsey.

Almost-three-year-old Clare came down with her family. Clare and Brady get together often, for which I am very thankful. Clare's family is pretty fabulous, and we are quite comfortable with them. We met Sue and her daughter Lindsey for the first time, who lives in a neighboring town. Lindsey will be four this summer, and a real cutie patootie. Our little Music Therapy buddy Coleman, 15-months-old, was here as well, bustling about wondering what everyone was doing here, smiling all around. And we had just met friendly little Luke, 18-months-old, who lives in the same town as us. Luke and Brady share their OT. In fact, it was seeing a picture of Clare that brought the idea up to the OT that Luke might have WS in the first place.

Everyone came at pretty much the same time; unpacked the diaper bags and started chatting right away. I felt like there was an instant conncection with everyone; I don't know if it was the common WS denominator or the fact that we are all fabulous people LOL. Tom and Michael were originally supposed to take off to work on Michael's Pinewood Derby Car, but Michael headed off to play with friends and Tom was a helpful pair of hands... in fact I think he held more of the kids than anything! He is a child magnet.
After lunch, we all sat in the living room and sang along with Danielle and her guitar. (There are seven days, seven days, seven days in a week...) Then she sang for us, a beautiful, husky voice that always amazes. She pulled out the shakers and drums for the kids to make music with. They were all enthralled with her and the guitar; Brady is mesmerized when ever she is here. You can physically see a difference in him as he drinks in the music, the beat. Was I looking for this child to have some musical appreciation since he was WS? I don't know, but it is vivid.

Writing this a few days later something has occurred to me: throughout the day, there was not a cry in the house - they were all quite busy playing with toys, eating or enjoying the music class. I can't say with all the playgroups Michael has been in over the years when he was young that there wasn't SOMEONE crying. Not this troop! They were interested in what was going on, they were busy having a good time -- no time for crying! :) It was a fabulous Sunday, hopefully one of many tp come with these wonderful families.
On a sidenote ~yes, that IS a picture of me! Oh my! ~ you'll see my rock bracelet on my left arm. Lisa and I have matching rock bracelets from when we visited them in January. As Joey Tribiani would say, "We're bracelet buddies!" LOL

Sunday, February 10, 2008

Counting My Blessings

1. I am blessed that Brady and I had a fun day with Angela and 1-1/2-year-old James this week - we hit a kid's play area which had a bouncy, ride-on toys and little jungle gyms. James was all over the place, running around and enjoying himself and I am happy to say Brady did partake in some of the toys as well. He sat on a little car for a roller coaster and held tight as it made its way down the track. He bounced his legs up and down on the edge of the jumpy. He sat on the little police motorcycle rocking toy and rocked back and forth (with mom pushing of course). It was nice to do something "normal" ... I am always thinking of things I did with Michael that I can't do with Brady, but he is getting stronger and able to do more every day.

2. I am blessed with a healthy family as I hear everyone around me getting sick with colds, pneumonia, you name it (I hope I didn't jinx anything!). We always joke that besides Michael's peanut allergy and Brady's heart condition, we are a pretty healthy family! I don't envy those who seem to get hit everytime something goes around.

3. I am blessed for my sister, Kathleen, who is donating 100% of the profits of her February online orders to the Williams Syndrome Association for Brady's Walk 2008 for Tastefully Simple products. This unselfish act reminds me how wonderful and generous people are. I know she has already received orders from St. Louis (thanks, Kel!). Her website is

4. I am thankful for the lazy weekend evening Michael and I had... popped some popcorn and watched "Hot Rod" (the humor of "Napolean Dynamite") under cozy blankets. I must admit I might have dozed off one time LOL, but it always makes my day to have some fun one-on-one time with him. He enjoys picking out the movie and cuddlin' up too~

Saturday, February 09, 2008

Mr. Brady has been very active these last couple of weeks. He is not content just hanging out anymore -- he wants to MOVE! He crawls backwards, I think just to move, not to necessarily get anywhere. He is eating food more readily, although we are still stuck at the Stage 2 baby food. He is eating that more than his bottle though, so although he is eating more he doesn't always gain a lot of weight without his bottle too. We'll see how he does at the end of the month at weigh-in.
I had put Brady down on the changing table and after walked away to throw away a diaper -- this is what I saw when I came back (about 4 seconds later): Aah! No more walking away from this kid!!

Thursday, February 07, 2008

Being a mom

I actually have some news to report on the little man.... like he is crawling backwards, he does not sit still, always wanting to move, eating great... but I was sent this story the other day and it sounds like everything I feel and more.

We are sitting at lunch one day when my daughter casually mentions that she and her husband are thinking of "starting a family."

"We're taking a survey," she says half-joking. "Do you think I should have a baby?"

"It will change your life," I say, carefully keeping my tone neutral.

"I know," she says, "no more sleeping in on weekends, no more spontaneous vacations."

But that is not what I meant at all. I look at my daughter, trying to decide what to tell her. I want her to know what she will never learn in childbirth classes. I want to tell her that the physical wounds of child bearing will heal, but becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable.

I consider warning her that she will never again read a newspaper without asking, "What if that had been MY child?" That every plane crash, every house fire will haunt her. That when she sees pictures of starving children, she will wonder if anything could be worse than watching your child die.

I look at her carefully manicured nails and stylish suit and think that no matter how sophisticated she is, becoming a mother will reduce her to the primitive level of a bear protecting her cub. That an urgent call of "Mom!" will cause her to drop a soufflé or her best crystal without a moment's hesitation.

I feel that I should warn her that no matter how many years she has invested in her career, she will be professionally derailed by motherhood. She might arrange for child-care, but one day she will be going into an important business meeting and she will think of her baby's sweet smell. She will have to use every ounce of discipline to keep from running home, just to make sure her baby is all right.

I want my daughter to know that every day decisions will no longer be routine. That a five year old boy's desire to go to the men's room rather than the women's at McDonald's will become a major dilemma. That right there, in the midst of clattering trays and screaming children, issues of independence and gender identity will be weighed against the prospect that a child molester may be lurking in that rest-room.

However decisive she may be at the office, she will second-guess herself constantly as a mother. Looking at my attractive daughter, I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give herself up in a moment to save her offspring, but will also begin to hope for more years, not to accomplish her own dreams, but to watch her child accomplish theirs.

My daughter's relationship with her husband will change, but not in the way she thinks. I wish she could understand how much more you can love a man who carefully bathes the baby or who never hesitates to feed, change or play with his child. I think she should know that she will fall in love with him again for reasons she would now find very unromantic.

I wish my daughter could sense the bond she will feel with women throughout history who have tried to stop war, prejudice and drunk driving. I want to describe to my daughter the exhilaration of seeing your child learn to ride a bike. I want to capture for her the belly laugh of a baby who is touching the soft fur of a dog or cat for the first time. I want her to taste the joy that is so real it actually hurts.

My daughter's quizzical look makes me realize that tears have formed in my eyes. "You'll never regret it," I finally say. Then I reached across the table, squeezed my daughter's hand and offered a silent prayer for her, and for me, and for all the mere mortal women who stumble their way into this most wonderful of callings.

Sunday, February 03, 2008

Simple Sunday Thanks...

1. I am grateful that Brady has been on an eating and moving surge this week. I am finally feeling like a parent of a two-year-old instead of a newborn who just sits there. We've always been a little boring over here, but now he is not content just hanging around too long without something to do.

2. I am grateful to meet our new friend Lucien, an 18-month old with WS, who lives in our town. He is so adorable and lovable, and we were able to hang with him and his triplet sisters this weekend. I am hoping to get together with his mom often, as she is such a nice NORMAL person LOL (Hopefully she thinks I am!). Lucien is doing great, crawling around like a caterpillar.
3. I am SO grateful we had Music Therapy this week with our friend Coleman. Brady does so well in Music Therapy - you can see his excitement and he seems to have such a great day after. Having Coleman here is also fun, I love for Brady to be able to hang with peers. I know he will get so much input that way. The therapist, Danielle, does such a great job entertaining the boys with her sultry voice and musical instruments. I am SO lucky we found her!
4. In fact, I am grateful for my whole Saturday -- meeting Lucien, playing with Coleman, Grandma and I hung out and had lunch; we had a relaxing day and then Tom and I went to the movies alone (gasp!) and had appetizers after. Brady and Michael were left in the capable babysitter's hands without a worry in our heads. Ahhh....
5. I am grateful we had a great visiting priest this morning at church. We have had some bad times over here... our beloved Pastor has been removed from our parish and there seems to be a dark cloud over everyone's hearts. I know it is for the best, as he is a recovering alcoholic and needs to address that addiction illness -- he can't take care of his congregation if he can't take care of himself. I almost feel guilty being so sad and feeling lost. Father Dennis has such a magnetic personality I worry about who they will replace him with come March. I can only hope and pray that we are able to have someone as blessed as him. But being able to say that I am grateful we had such a good priest today gives me hope that we might find someone wonderful.
6. Last but certainly not least... I am grateful for the PATRIOTS going to the SUPERBOWL tonight! Yahoo - Go Pats!!