Welcome

Welcome to our blog. Our purpose is to keep family and friends updated regarding our family, and especially regarding our sweet baby Lauren.

Lauren was born with Williams Syndrome. Williams Syndrome is a small deletion of genetic material on chromosome #7. It happens randomly, occuring in around 1 in 7,500 births. So it's very rare and most people have never heard of it, including lots of doctors. People with WS have many similar problems and characteristics. Here are some of the main ones:

Characteristic facial appearance
Cardiovascular problems
Learning Disabilities
Hypercalcemia (elevated blood calcium levels)
Feeding problems
Dental abnormalities
Kidney abnormalities
Hernias
Hyperacusis (sensitive hearing)
Musculoskeletal problems
Excessively social personality
Developmental delays
Attention Deficit
Marked gross and fine motor difficulties
Marked visuo-spatial difficulties


How WS affects people can vary greatly. Lauren won't have every problem, but she will need lots of care throughout her life. So far, we are very fortunate that Lauren is doing very well. She does have moderate pulmonary stenosis, which is a narrowing in her heart that may require open heart surgery. This is very common in people with WS. She also receives physical therapy and occupational therapy twice a week. Her gross and fine motor skills are showing improvement.

I guess the good news is that people with WS tend to be very happy and friendly, but because they are "different," they have trouble having true friends, and I worry about her being teased and being lonely. She will most likely not marry, have kids, home, career-all the things a parent dreams their kids will be able to have. She will probably not be able to live independently, although some can work and live alone, but with support and supervision.

Tuesday, May 27, 2008

God Doesn't Fix Problems, He Changes Perspectives

So I have been thinking about what I wanted to post next for some time now, I just haven't found the time to post anything. I need to learn to let the dishes and the laundry go! I would much rather blog anyway, even though it doesn't seem like it, since my posts are so infrequent.

Anyhow, we went to Florida over Easter, as we usually do. It brought back so many memories of our trip last year at the same time. We had just recently received Lauren's WS diagnosis, and we were going through so much emotionally. We had known long enough to not still be crying every day, but we were still sort of numb and in shock a little, trying to be positive and still very much adjusting to the information. Throughout all three of my pregnancies, I had prayed so much for my babies. I just wanted each to be healthy, with no problem that can't be fixed. I begged God, told him I would do anything, just please let them be typical healthy kids, but if anything has to be wrong, please let it be something that there is a cure for. Well, there is no cure for WS. I thought the bible says "Ask and you shall receive"? Why are some people's prayers "answered" but not others'? Well, that's a pretty deep discussion, and I was a little mad at God for awhile. But I kept praying, asking for Lauren to have the mildest case of WS ever known. He may have answered that one, at least so far.

We have been so fortunate with Lauren's health and so many other issues. She eats literally everything, poops great, sleeps through the night, no hypercalcemia, etc. She has her developmental delays, and her moderate (but stable) pulmonary stenosis, and that's pretty much it. For now. WS symptoms can vary so much it's crazy. We know she will have difficulties learning, health issues, may never be independent, and so on. But we are immeasurably grateful for how well she is doing so far.

During this year's trip, while walking through a flea market near Daytona, I was reminded of someone I met there the previous year. A woman working there struck up a conversation with me about babies. She was so happy that Lauren has the same name as her newest granddaughter, she handed me a penny cut into the shape of a cross, and told me it would always keep Lauren safe, if I kept it near her. It is still taped to the underside of her crib. I am not superstitious, but the woman had no idea what we were going through, and it was very touching.

So, it seemed like everywhere we went on our trip, I was thinking about the difficulty of the previous year and how we were feeling, and how far Lauren had come. I really try to be a very positive person, and difficult as it is to accept that our beloved daughter will be "different," my husband and I both know things could be so much worse. We have come so far emotionally. It is still very difficult, and I still cry for her and worry about her future. But we have learned to make the absolute best of it.

I am not a terribly religious person, but I do have Christian beliefs, and I enjoy reading so many of the clever signs I see in front of churches, trying to get people's attention. For example, "Sign broken, come inside for message," or "CH CH What's missing? UR." Well, guess what a church sign said driving home from Florida, after all these thoughts running through my head?

God Doesn't Fix Problems, He Changes Perspectives

Wow, how much my perspective has changed in a year. Life is what you make it, so make it happy.

11 comments:

Tes & John said...

Thanks for the blog update. Our Lila is 5 and believe me we still take in the "signs". Our existance is a blessing, a little flawed but no less beautiful.
Hugs
Lila's mommy

Penny said...

So glad to hear that Lauren is doing well. She is just beautiful and sounds like she is making great progress!

Laura said...

Sounds like she continues to do well. It's great to hear!
She is just adorable!!!!

Nicole said...

Hi Connie, Lauren is just beautiful and is doing great. I very much agree with you that life is what you make. You've got one shot here so you might as well make it happy. It is a choice.

I find I no longer mourn the fact that Emerson has WS. She is doing well and is a complete joy. As time goes on though and as she gets older, the acceptance helps because her having having WS becomes more evident. It becomes less subtle, her look, her walk, her behavior. Thankfully, we adore her for who she is and can wait to see how far she goes.

Take care and keep posting! I love hearing about Lauren. Nicole

Heather said...

I always seem to come across a church sign that seems to be speaking directly to me. Funny isn't it?
I really think there is a bigger picture than we can see at this point. We catch a glimpse here and there but never get the whole picture.
Someday this life of ours will all make sense.
glad you have a better perspective this year. :) Heather

Tara said...

Amazing what one year can do, isn't it? Lauren sounds like she's doing wonderful!!!!!!

Every minute counts.... said...

Sounds like things are going well for your family. I do really like that church sign. So true. I know that my perpective has totally changed since Abi was born.
Noel

Julie said...

Glad to hear from you again. Your story about the woman with the penny brought tears to my eyes. God allowed for that to happen just when you needed it.

Ginneh Akbar said...

Your girls are beautiful and that was a great blog post.

Dawn Low said...

Thank you, thank you, thank you for your post. My son, Sawyer, was diagnosed with WS just two months ago (although now it seems like a lifetime). Coming to terms with the question of "Why did God do this to my baby?" has been one of the more difficult pills to swallow. But, if I am to believe in a God at all, I have to believe that he doesn't purposefully make some people sick or poor or disabled. We can pray for strength, but the rest is up to us and a whole lot of luck. I am glad you saw that sign and passed it on.

mich said...

Hi Connie

I found your blog about precious Lauren. She is so pretty. Your blog struck me with so many similarities. We have 3 boys. Jake is 8, Matt is 5 and Adam is 15 months. Adam was a surprise blessing. At 2 months we found out he had Williams Syndrome. We found out due to his heart issues. He has aortic stenosis and pulmonary stenosis. We are just learning our way through the William's world and the balance of normallcy for our other two boys! I am so glad I have found your blog. I have been trying to get one started also. I am glad to find new information and read about other families like us! Thanks!

About Me

My photo
Jerry and I have three daughters: Katelyn is 6, and in the 1st grade. She is in her 5th year of ballet. Kristen is 4, in pre-school, and switched from ballet to gymnastics and loves it! Lauren turned 2 years old on January 8, 2008. We live in Holly, Michigan.

DONATIONS ACCEPTED, NEVER EXPECTED, ALWAYS APPRECIATED

Lauren's extended family has graciously created a mutual fund for Lauren's future. We will care for Lauren as long as possible, but inevitably there will come a time when we are gone. We never want anyone to feel obligated to help Lauren, but there are many people who like to make donations to various causes, and would like to be able to help someone they know. Please know all donations are immediately deposited directly to Lauren's fund, and will only be used for her needs once we can no longer care for her. Donations can be made in any amount, at any time, by anyone, to the following address:

Edward Jones Investments
P.O. Box 395
New Baltimore, MI 48047-0395

Checks can be made payable to Edward Jones Investments with a note indicating it is for the Lauren Stark Fund. Questions can be answered by our Edward Jones Investments Representative, Pat Dorcey, at 586-725-6445, or
post a message and we will get back with you promptly.