Sunday, August 31, 2008

A Lifetime of Care

Gracie wore a lilac gingham dress to mark the special occasion. As we walked into the room, light streamed through the glass. Charlie carried Grace in the safety of her bucket car seat. Several babies were happily playing on the carpet, others were bouncing in chairs, another was receiving a diaper change from Miss Sue, and a few were having a morning nap.

I frantically searched the room for a reason...a reason why I shouldn't be leaving my precious baby, Grace, in their loving care. I knew that this was a normal reaction to the first day of childcare, but it gave me no comfort. Charlie seemed to be a little unglued, too, but he was more stoic than me. My lip trembled and a lump formed in my throat. Most of all, I couldn't believe that I would have to go to work that day. How could I possibly do that and not be an emotional mess? How?

Nearly six years ago this September, we left Gracie in the care of a lovely lady, close to retirement age, who was simply named Ms. Sue. There were several other teachers in her room, but none like Ms Sue. She was a take charge kind of lady. She seemed to be a magician to me. After all, how could she take care of so many babies simultaneously? She did though, and she did it with love. It made leaving Gracie a little easier, but didn't stop me from sobbing the whole way to work.

Nearly two years later, we left Meghan in her loving arms again along with another special teacher, Ms. Paula. Meghan was only about six pounds when she started...but she had come a VERY long way from her 1 pound, 9.5 ounce beginning. Leaving her with Ms. Sue and Ms. Paula was no easier, but we did it again. I somehow made it through that day, but I did end up in tears driving to work.

Somehow, six years have passed, and now we have closed a chapter of full time day care in our lives. On Friday, the girls spent their last day at Pilgrim Child Development Center. It was rather uneventful, yet reminds me yet again how fast time does fly by when you are watching precious miracles grow into young girls.

Grace is starting first grade on Tuesday, and Meghan will be entering K4 too. It has been an amazing journey and I can't wait to see how it all turns out. Enjoy some pictures from their last days at PCDC.

For Lisa: Singing in the Rain Award

Having been the recipient of a very special award called the Singing in the Rain Award from Childlife at In the Life of a Child, I knew I would eventually pass it on to a very deserving parent. Honestly, I wish I didn't have to pass it along because the person I'm passing it along to has had so very much to handle lately...honestly, in my opinion, too much...yet she perserveres and keeps her faith in all things good in life. So Lisa, here it is:

Lisa is an amazingly resilient mother to her very special miracle sons Aiden and Mason. I "met" Lisa online in 2002 at a discussion forum for parents with children who have liver disease. Aiden was born with biliary atresia, received a life-saving liver transplant, developed life-threatening food allergies, and has now been diagnosed with dysautonomia. While his life has been full of medical challenges, I've never known Lisa to waiver in her faith in God and her family. Please consider sending positive thoughts and prayers to Lisa's entire family.

I just love the bible reference she has posted at the top of Aiden's web page: "He will fill your mouth with laughter and your lips with happy shouting." Job 8:21

You can read Aiden's story on his Caringbridge web page. Lisa's post on August 29, 2008 was what made me think to pass the award along to her.

Lisa, I hope this awards brings you a smile even if for only a moment. Many virtual hugs coming through cyberspace to you!


Finding Courage Through Sharing August 2008


This month, Childlife, has a new topic for the Finding Courage Through Sharing blog carnival. The topic for this month is memories and memory markers. Share about something that trips a memory in your journey with your child or children, or just a memory that is special to you. The memory can be happy, sad, or anything in between. If you don’t have time to write specifically for this prompt, feel free to share a post that matters to you from your archives.

For August, I've decided to include a post from my archives, which is really quite devastatingly sad, and profoundly affected me...especially how I respond to my life, my childrens' lives, and how I experience the love provided to me by all my loved ones. This post was originally entitled "I'll Never Forget," which is why I've selected it for this month's topic. Read more here:

In memory of Antonio Jovanni Perez. You are forever loved, remembered, and cherished.

Saturday, August 23, 2008

Testing Newborns for Alpha-1 Antitrypsin Deficiency

I've been asked to provide a patient's perspective at an Alpha-1 Foundation Critical Issues Workshop in September regarding newborn screening for Alpha-1.

I'm a little nervous about this, but mostly because I feel so passionate about the subject. I know that this can be a sensitive subject, and as you may have guessed, I support newborn screening for Alpha-1. This is especially based on my own experience with having 2 children diagnosed, but I became quite passionate about it after Grace's newborn screening results. Alpha-1 was not included in Wisconsin's testing in 2002 when Grace was born, and it still is not included. Anyway, that was a pinacle moment for me as a parent. At that point, we were given an "all clear" based on her newborn screening panel. I hadn't yet heard of Alpha-1 or understood its complexities. I remember sighing a huge sigh of relief at the news of Grace's great results only to have Alpha-1 enter our lives about 1 week later.

Obviously, after the initial shock wore off, I've come to respect Alpha-1 in a lot of ways. No, I wouldn't purposefully ask to have a child with Alpha-1, but I honor its force in our lives. It has provided me with perspective and a healthy amount of remembering to live in the moment.

SO, what the heck is my point here? WELL, I'd like to ask that any parents of children with Alpha-1, share their opinions on newborn screening for Alpha-1. Are you for it? Against it? Please tell me why.

I know a lot of Alpha-1 parents lurk on my blog, and that is okay, but I'd love to hear your thoughts through commenting on this entry or by sending me an email to jenchar [AT] uwalumni [DOT] com.

I'd like to prepare myself for the kinds of questions I may encounter while at the workshop. It will be full of medical professionals who have influence and knowledge of Alpha-1. I hope to encourage them to allow parents to have information that is critical to the upbringing of their children.

Thanks in advance for your thoughts. I'm sorry if I rambled...can ya tell I'm nervous? haha


Tuesday, August 19, 2008


Tonight, Meghan, Grace, and I were lounging on my bed watching the men's diving in the Olympics. Grace was interested in seeing how many times each of the divers could spin around in the air. Meghan spent most of her time attempting to distract Grace with tickles and general rough housing.

Suddenly Meghan fell quiet. She sat up, inspected the TV, and noticed a diver gently bouncing on the tip of the diving board. Next, I heard her gasp, and say "Ewwwww boobies!" He can't show his boobies. LOL

Then Grace added this enlightenment, "Meghan! Boys can show their boobies, but girls can't. It is a law."

I couldn't help but giggle.

Thank God for giggling moments. They are saving my sanity. :)

Girl Power

Last evening, we attended a Milwaukee Brewers baseball game. Gracie has never really been interested in attending sporting events, but actually seemed to enjoy it. It did help that she brought along a purse-full of girly items to entertain herself.

About half way through the fourth inning, she says, "Hey Mom! How come it is all boys playing? When are the girls going to play?" After a brief explanation about how the Brewers are all men, she says in response, "Well that is not fair Mom. They need to get some girls to play too."

WOOHOO Gracie. I love how she thinks.

Girl power! haha

Sunday, August 17, 2008

False Alarm for Gavin

Sad to say, but Gavin's transplant didn't happen. False alarms happen, but they are often an extreme let down for the family, who are desperate to save their loved one's life. Unfortunately, the transplant team decided that the liver could not be split between two patients.

Continued positive thoughts and prayers for Gavin and his family.

Saturday, August 16, 2008

Gavin Gets the Call

I just learned that a little baby boy, named Gavin, has been called for a liver transplant due to his progressive liver disease from Alpha-1. Please consider sending positive thoughts or prayers to him, his family, his surgical team, as well as his donor's family.

For more information, see his blog:

Gavin has had a rough time lately, and this is a very much needed blessing to have him receive the call. I hope the surgery is still a go and the donor liver will be a perfect fit.

A Tooth Less...

Yesterday before the girls' bedtime, our nightly routine of lullabies were just wrapping up. I had just turned on the sleepy time music, and began to walk away from Grace's bed. She was tucked in, rubbing her sleepy eyes, and cuddling in for the night. Dani kitty was safely stowed in her arms, and this mama was relieved to have settled her down for sleep. I was looking forward to a planned telephone call with one of my oldest friends, Jen. It had been too long since we had spoken.

As I walked toward the door, I heard Gracie say with her fingers in her mouth, "Mommy, I 'fink my toof fell out."

Feeling rushed and a little bit annoyed because I was still looking forward to an adult conversation, I said, "What Grace? Are you sure?"

"Uh huh, Mom. Well, I mean my tooth feels weird in my mouth. Is it out?"

"Well, let's get the lights back on to check it out Gracie." I switched on her night table lamp, and she sat up in bed. My eyes had adjusted to the very low lighting, and I couldn't see it so well.

"Come on, Grace. Let's go to the bathroom and check it out in there."

Meghan excitedly sat up and whined, "I want to come too. Please Mommy. Please."

"Alright, we'll all go see what is going on."

I flipped the light switch on, and we all winced in the brightness. Grace opened her mouth, and I immediately noticed that her front, left baby tooth was laying sideways within her mouth. I laughed at it, and she frowned at me. I thought to myself, "Whoops. Keep it positive Jen."

"Grace, you can pull it out if you want now honey. It is ready to come out." She stuffed her index finger and thumb into her mouth, but came away empty handed.

Meghan gleefully didn't notice Grace was still without a tooth in hand, and shouted "Yay Gracie! The tooth fairy is comin'. The tooth fairy is comin'."

Grace shot her a knock it off kind of look, and whined, "Mommy! I can't get it. Can you pull it out for me? Please. I can't get it. It feels weird Mommy. Please."

"Alright. Alright Grace. I'll help you." I really didn't want to pull it out though. I vividly remember how it felt to yank my own baby teeth out and honestly, thinking about it makes me feel a little nauseated and well squishy inside.

Dismissing those feelings, I pulled a tissue from the tissue box, and said, "Are you ready Grace?"

"Yes Mommy. I'm ready."

"Okay, here goes."

The first tug yielded no results, and I was right. I felt squishy in response to my actions, but I didn't let on. Grace stood patiently as I attempted another time.

Success! There it was in the palm of my first born's first tooth. Tears pooled, but I suppressed them. Meghan applauded when I said, "Here it is Gracie. Careful. It is tiny. We don't want to lose it."

Gracie smiled with pride, and a new hole where the tooth used to be appeared within in her one less tooth smile. It was not bleeding, though. I was glad for that since Gracie seems to overreact to blood a bit. Whew! Meghan continued to jump up and down, and said, "I want to see it. I want to see it. Mommy, I want to see it."

Meghan immersed her face within my palm to inspect the tooth. I quickly thought I'd better find the digital camera to take some pictures, and a quick movie. I glanced toward Gracie, and there before me was a young, beautiful girl.

She was no longer my baby, but still very much my heart. How fast the time has passed. I want to capture these moments, and deposit them into my heart forever. I know that memories fade, but one thing is for sure. She will always be my baby, and her existence changed me forever. I'm so pleased to see her growing, experiencing, learning, and wanting to be more. I'll take "her" anyway I can, and hope that our future together will be fulfilling and complete with even better memories. Hopefully, I'll help to nurture her basic nature for the betterment of her life.

Enjoy her new "a tooth less" smile. I know I do. :)

Tuesday, August 12, 2008


Today, I felt the sun on my skin
The breeze on my face
The grass crunch beneath my feet
The earth between my toes
The toasting of the mid-day sun
And then, the coolness of shade

Today, I felt acknowledged, accepted
Free to be my true self
Without a mask
Worthy and understood
Needing, experiencing, wanting

No longer marching routinely
No longer engrossed in items of no value
No longer missing out on colors or joyful thoughts
No longer forgetting to giggle until it hurts

Today was a gift
A gift to myself
The smiling and laughing me
Heart, body, and soul
Amazing me

Monday, August 11, 2008

A Glimpse into the Mind of Gracie

"Mom, I'm pretty clumsy."

"Yes, sometimes Gracie."

"Well, even though I'm pretty clumsy that isn't bad. Right?"


"Cause Mom, we all can't be not clumsy, right?"

"Yes, Gracie. All of us are different and unique in our own ways. That is what makes us special."

"Yeah, we don't all want to be the same cause that would be boring."

I guess she does listen to me afterall. :) I love that girl so much. I'm so proud that she can accept her strengths and weaknesses together.

She also happens to now have 2 very, very wiggly front, lower teeth in her mouth. She is so excited, and I'm just amazed by how quick the time has gone by. I vividly recall when those baby teeth erupted. Where did my baby girl Gracie go? She has grown up into a young girl now. Wow.

Me? Really?

While I was on vacation last week, one of my bloggy pals, Childlife, gave me an award that deeply touched my heart. She wrote a bit more here if you are interested:

Thank you Michelle. I will certainly pass this along when the time is right. :)

Sunday, August 10, 2008

For my BFF

The Best of What's Around, by Dave Matthews Band

Hey, my friend
It seems your eyes are troubled
Care to share your time with me
Would you say you're feeling low and so
A good idea would be to get it off of your mind

See, you and me
Have a better time than most can dream
Have it better than the best
And so can pull on through
Whatever tears at us
Whatever holds us down
And if nothing can be done
We'll make the Best of What's Around

Turns out not where but who you're with
That really matters
That really matters
And hurts not much when you're around
When you're around

And if you hold on tight
To what you think is your thing
You may find you're missing all the rest
She ran up into the light surprised
Her arms are open
Her mind's eye is...

Seeing things from a
Better side than most can dream
On a better road I feel
So you could say she's safe
Whatever tears at her
Whatever holds her down
And if nothing can be done
She'll make the best of what's around

Turns out not where but what you think
That really matters
That really matters
That really matters

See, you and me
Have a better time than most can dream
Have it better than the best
And so can pull on through
Whatever tears at us
Whatever holds us down
And if nothing can be done
We'll make the Best of What's Around

Turns out not where but who you're with
That really matters
That really matters
That really matters
And hurts not much when you're around
When you're around

Saturday, August 09, 2008

Disneyland, USA

After some time in Phoenix, we drove to Anaheim, California to visit Disneyland. The girls were ecstatic, but the adults were not so thrilled with the crowds and hot, humid 90-degree weather. We all agreed it was magical to see how the girls responded to it all, though. I suppose the five hour drive to get there was what "did us in." :)-

We rode rides and ate bad theme park food, but we survived. :) Grace seemed to have sensory overload and ended up in tears quite a bit. She was thrilled with a story book canal boat ride though. She loved seeing real ducks swimming along the way. All-in-all, it was a bit nostalgic for me. I remember how I felt as a child looking up at all of the blissful child-centered experience.

A very magical part of the day was when the girls got to watch the Parade of Dreams. Gracie kept telling me that "those" were the real princesses. She was simply stunned by seeing them atop the floats. She asked me to take pictures of all of them. Here are a select few from the parade:

Darkness fell, and we purchased some light-up Minnie Mouse ears for the girls.

It all ended with a surprise run-in with the old mouse himself: Mickey Mouse.

And then there was this very magical view...

Followed by a tram ride back to the parking lot...

So two little girls' dreams were fulfilled, and like these balloons, both were on cloud 9. :)


Well hello my old pal, blog!

I’m back and really not very rested at all so this entry won't be my usual narrative-style of writing. We’ve just returned from a week long whirlwind trip to Phoenix, Arizona to visit with my mom. I felt like I was on fire in Phoenix…hot doesn’t quite begin to describe the heat there. I’m also a bit “toasted” by the sun. Guess what! This red-headed fair skinned gal burns through SPF 50 sunscreen in one half hour. I guess I should have gone for the zinc oxide. Haha Ouch!

I thought I’d post some pictures of our vacation, which started off with lots of swimming in Grandma Sherry’s backyard pool.

Grace learned how to swim under water on this trip...

Then, we went to Phoenix's wildlife zoo, which is pretty close to Grandma Sherry's house. The girls were ecstatic when the zoo train took them up close to the animals within the enclosures.

Next, we headed for Sedona, Arizona for beautiful scenery and to experience what Grandma Sherry calls the spiritualness of Sedona. I didn't quite know what to expect until I saw the red rocks jutting out of the toasted dessert sand. These pictures really didn't capture the true experience for me, but they did turn out beautifully.

I'll post some more pictures soon of the rest of the trip. This one is long enough now.

Saturday, August 02, 2008

Stitches Out

On Wednesday, Gracie had two external stitches removed from each end of the incision, and also had the steri-strips removed. Unfortunately, Grace's sensory issues overtook her ability to control herself. Two nurses, one doctor, and Charlie had to restrain her to have the stitches and strips removed. I missed out on the "fun" because of work. I was hoping that wouldn't happen, but she really was "overdue" for an episode of explosive tantruming. I'm not exaggerating either.

She has been through a lot in the last few weeks, and we are quite proud of her. She did well overall, and that counts a lot in the world of girl with sensory processing issues. Way to go Gracie!

Otherwise, the incision looks great. She is a little bruised still, but now we have the task of keeping the sun off the scar for the next year.

I'll be on a bloggy break for a little while. We need some family fun time. Enjoy what is left of summer everyone.