Hope and Love are key

Weird changes

2010-07-28T20:01:00.000-07:00

It is so strange how a person changes focus once they become a parent. Jeff and I sold our home, then freaked out about the impact it would have on Jackson. I no longer emphasize my charity work to cancer, my passion, but to Down syndrome/special needs. I suppose DS has become my passion now.

I just read a website offering stem cell transplants to cure DS. I wonder what parent would decide to do this? Would their child be different afterwards? For the better or would they be disappointed?

All my best to everyone.

Sunny days

2009-04-26T19:06:00.000-07:00

Yippee! Spring has sprung! A lot of sun and a little bit of rain today. We enjoyed a lovely day lounging around the house this morning and then working on the yard and cleaning the garage. Jackson got to drive his truck, play with our wonderful neighbors and fell dead asleep tonight. I think I will do the same.

Ready for warm weather fun!

2009-01-20T19:19:00.000-08:00

I have been informed we (in Michigan) now have gotten over 50 inches of snow this year. This is the amount we usually get all winter.

After just returning from a week in Florida and going to the beach everyday, this news of the snow fall, is especially depressing.

So I am taking my Omega 3-6-9 that the psychiatrist at work suggested to ward off S.A.D. (seasonal affective disorder) and looking at pictures from last summer and fall. This hopefully will get me through March and the weather.

This picture is of Jackson and me after riding our bikes (ok, Jackson rode on the back of Jeff's bike) about 20 miles. We rode 26 miles that day. I never thought I had it in me! We will have to try to double that this summer! : )

Winter fun

2008-12-16T17:33:00.001-08:00

We really have great neighbors! Everyday Jackson wakes up he asks to go play with one of them.

Here Jackson is with his friend Abby. I will expect more snow of the ground tomorrow morning than what we had as of this picture.

Volunteerism

2008-12-10T20:31:00.000-08:00

I have decided to run for a board position with our local Down syndrome support group. I attended a meeting tonight and came home so excited to get started! I am happy that I have such a wonderful son and want to do all that I can to see that he achieves everything he wants out of his life.

Volunteering has always brought a sense of fullfillment to me and I am glad I have the chance to get involved in this group. Look for me asking for your help and donations in the near future . . .

Cancer Free!

2008-10-27T12:05:00.001-07:00

Another 6 month check up today showed that I continue on my path with a clean bill of health. I understand that I am irrational (a lot of times) but I have had some situations in my life that give me good reason to worry about these appointments. Years ago, a doctor at my work diagnosed a woman with "impending doom". I laughed at the diagnosis and he explained, it is a true diagnosis. For some reason today, I had that feeling of "impending doom". My oncologist gave me a hug, I cried a little, and he reassured me that I continue to be cancer free. I am so lucky to have wonderful people in my life from Jeff and Jackson, to my parents to my doctors. So another 6 months can go by before I have to really worry about cancer again. Yippee!

Four years and counting . . .

2008-10-16T13:21:00.000-07:00

I just passed my 4 years of survivorship after the stem cell transplant and have an upcoming Oncology appointment. This ALWAYS makes me nervous. I am 14 years out of the first chemo/radiation and was always nervous before the recurrence as well. I get this pit in my stomach and feel like everyone is looking at me, wondering why this young person is sitting in the waiting room. I am considering getting more genetic testing done in regards to my future risks for other cancers like breast cancer. But knowing what a worrier I am, this may make things more scarey each time a doctors appointment comes up. It is much easier to forget about it and not worry which is how I live most days.

I watched the Bucket List last night. I would highly encourage everyone to make your "bucket list" if you haven't already. I already have some of mine marked off: go to Costa Rica, marry a man who is my best friend, become a mom, sing Karaoke, and so on. Next one to mark off is travel to Africa (September 2009). It is a work in progress and ever changing. : )

Big Jack!

2008-09-03T13:25:00.000-07:00

Jackson went back to preschool this morning with his Cars underwear on and came home on the bus in the same clothes - potty training success! I am so proud of this kid. Nothing holds him back. We were jumping off the diving board and going down the big slide at our neighbor's house on Labor Day. Anything you can do, I can do better! I guess is Jackson's motto. I am all for this! I want him to want to do everything the other kids are doing. Life is good I tell you!

More Summer Fun

2008-08-21T19:04:00.000-07:00

Summer in Michigan is short and we try to make the most of every moment. Here is Jackson running through his Cars sprinkler pad in our front yard.

Summer Fun

2008-08-21T18:50:00.000-07:00

We are taking our second trip in our motorhome with our neighbors and my mom. It is almost September and FALL and we are only on our second camping trip. It is exciting that my mom is coming along! We never get to do things like this together.

Here are some pictures from our camping trip for the Fourth of July. We got a TON of candy at the parade and went on an 18 mile bike ride to a not-so-nearby lake. That made me realize, I am no where near ready for biking in one of those 3 day events. I have a lot more training to do before I am ready for that!

YMCA

2008-08-21T18:39:00.001-07:00

YMCA! Yes, today I taught Jackson how to do the YMCA. The song came on the radio and he LOVED it! He asked for me to play it again and weirdly, I had a CD with the song on it! I wonder what that says about me? Hmmm. But we got our exercise in tonight dancing around the kitchen. These are the moments that make those long days at work and hardly ever being home on any given day, worth every bit of it!

The potty saga continues . . .

2008-08-06T14:29:00.001-07:00

Jackson told me he had to go potty! Finally! We are trying the big boy pants these days and have lots of success. Wish us luck!

Lucky

2008-07-26T19:10:00.000-07:00

I thought for many years that I would never be able to just sit and watch Jackson play. For the first few years of his life, I had to chase him around, try to keep him safe or help him walk (or carry him). Today at my niece Lindi's B-day party for the first time, I was able to sit back, watch him interact with other kids and the adults and play ON HIS OWN! I have had this conversation with a friend/neighbor who has children with special needs about this. It was WONDERFUL to have an adult conversation while watching Jackson play and socialize. I guess I just wasn't patient enough. Now that he is four, he is spreading his wings. I love it when he teaches me something - and it happens all the time.

I have read many stories of kids & adults with Down syndrome that surprise and teach people. One story I love is a child with Down syndrome was grocery shopping with her mom and their was a homeless person in the store. The mom saw the man as filthy and definately someone she would not approach. Before she knew it her child ran up to the man and hugged him! The mom began to apologize for her child but stopped. She noticed that the man was crying! He told the mom that no one had hugged him in a very long time and it felt wonderful.

There are many times like this that Jackson has taught me to stop and think about life. He is my blessing.

My friend Randi

2008-06-24T19:28:00.000-07:00

Here we are the day before they loaded up for FLA. Lucky bums!!!

Friends

2008-06-24T19:21:00.000-07:00

Today I got to see my girlfriend Randi and her son Jack. Randi is the ULTIMATE friend. Despite having 2 kids and one on the way, Randi spent a week with me in Nebraska during the time of my stem cell transplant. Randi took wonderful care of Jackson while I was running from doctor's appointments or tests. I was honored that when the time came to name the baby she carried while we were in Nebraska, she asked if she could name him Jack. Of course I said YES! To top it off, her Jack was born on Jeff's Birthday! In December, Randi and her family moved to FLA. I miss her terribly. Here is a picture of my Jackson and her Jack last December.

Books

2008-06-24T19:15:00.000-07:00

My extent of reading these days is either a catalog (which I love to read) or kids books. Some of the kids books are so cute! I am in love with a book I got for Jackson at a library sale called "Hugs and Kisses". It is about a little puppy, Hugs, who goes out one day to find something out. He asks a bunny, a duck, a butterfly, a horse, all for a kiss. When he gets home his mom tells him that she was so worried about where he had gone. She then kisses him. Hugs proclaims to his mom, "that's it, now I know. Those other kisses were soft, tender, etc but YOU give the best kisses!" Having Jackson in my life brings SO many wonderful things. Including time to experience kind, gentle situations like reading him a book at night. Ahhh, life is good.

The potty

2008-06-23T13:25:00.001-07:00

Jackson is now 4 years old. We have had our share of potty training successes but mostly failures thus far. The therapists and teachers tell us he is not ready. But we (Jeff, our daycare provider Kim, and myself) think he knows exactly what he is doing. Sure he gets busy and will forget like any kid, but he is aware of himself and can do this! It is so frustrating to have him sit on the potty, say he is done, get up and go in his pull-ups. Help! Any suggestions? I feel like we have tried it all!

Welcome to my blog!

2008-06-22T19:31:00.000-07:00

You must have found my blog! Welcome! I hope we can keep in better touch using this new (to me) technology. Good night!!

Jeff's Birthday Celebration

2008-06-22T19:11:00.000-07:00

For Jeff's 50th B-day I would have thought he would want a HUGE BASH! But he chose a laid back weekend in Chicago where all of our activities centered around Jackson. I have come to realize that once you are a parent, everything, including your birthday revolves around your child.

Jackson and I took Jeff to Shedd Aquarium and out for dinner. Then we took Jeff swimming in the pool at the hotel which was on the 4th floor of the building next to ours so it was a rooftop pool. It would be soooooooooooo cool in the summertime. As you can tell Jackson is really enjoying dinner with us - eating a Dove Bar! Like I said, life revolves around his wishes and wants now! ; - ) Ahhh, the life of an only child.

New friend

2008-06-22T18:51:00.000-07:00

Today, I met a 28 year old with a sadly, familiar story. She was just diagnosed with Hodgkin's Lymphoma while pregant. We have been talking via phone or email and she asked that we meet face to face! First of all let me say that all bald women are beautiful! She is even cuter being pregnant and bald. I have to admit, I got teary eyed feeling for her and her family. Especially her husband. I thank my lucky stars everyday that I had Jeff there for me. He was (is) my ROCK. Yeah, you could say he rocks! ; )

This girl will be induced tomorrow at her 36th week of pregnancy. It is just not right to have this beautiful, thrilling time ripped away from you to be diagnosed with cancer. Keep her in your thoughts and prayers.

On with technology

2008-06-22T18:49:00.000-07:00

My girlfriend, Natalie, has been trying to get me to journal for years. I have always wanted to journal but have never gotten around to it. This is my idea of how to share photos and journal (Ok, not my deepest, darkest secrets, but some thoughts) at the same time.