Blogoversary?

Well, Renee is having one at Life With My Special Ks. AND she is giving away some cool gift baskets. Check it out!

'tis the Season

A biotech company called me the other day. They wanted to make certain that they have current insurance information for Ralph. You see, cold and flu season is fast approaching. Ralph's pediatrician wants him to have monthly Synagis shots again this year.

Synagis protects against RSV, a respiratory virus that can cause life-threatening illness in premature babies and those with lung disease. The series of monthly shots begins in October and ends in March or April. The good news is that our insurance will normally cover Synagis if the doctor writes a letter stating that it is medically necessary. The bad news is that the co-pay is $250 per month, at least it was last year. Probably more this year because Ralph is bigger. We only managed two shots last year.

Ralph DID end up in the hospital with a respiratory virus last year, but it wasn't RSV, it was adenovirus. I'm not sure what to do this year. Ralph seems to be so much stronger and healthier than ever before. But, babies and children with Down Syndrome are especially vulnerable to respiratory viruses. Is spending $250 each month to protect against ONE virus a wise move?

Oh, and the flu shot...what to do?

New Old Friends

Last year at a local DS Society meeting a woman came up said, "Stephanie?" Yes! It turns out that we went to school and graduated together 20 years ago in a little town 3 hours away from here. I guess I haven't changed much because she recognized me right away. Her little boy is 4 months younger than Ralph and is a cute little butterball!

My friend and her husband and 2 little boys came to town this weekend for the Buddy Walk. We were privileged that they joined up for church this morning. They even took our larger than average family out for lunch! The two babies sat side by side in their high chairs and studied one another. So cute!

So, is it a coincidence that this girl I went to school with has a baby with DS about the same age as Ralph? Is it a coincidence that we bumped into one another? I don't believe in coincidence! We were meant to have babies with DS. We were meant to be friends. Life is really rich!

A beautiful day - not just the weather.

Today was the DSSW Buddy Walk. That is the Down Syndrome Society of Wichita. The weather was a bit breezy but comfortably warm and sunny. For my children this is the highlight of the year! There were well over 1,000 people registered this year, the 5th year of the Buddy Walk here.

Yesterday we all took a road trip to my hometown for the homecoming parade and to visit family. We had to make a detour to deer camp on the way home so we didn't get home until 11pm last night. I committed to bringing 5 dozen cookies for the buddy walk. They didn't get baked yesterday. They didn't get baked last night. They got baked this morning! I'm sure they were still warm when we arrived at the walk!

I was so worried about getting the cookies done that I forgot to grab the camera on the way out of the house. I'm very thankful for the friends we met at the walk who agreed to email us some pictures. The DSSW makes signs out of pictures of our children to place along the one mile course. We all had our picture taken next to Ralph's sign. Brian and Kellie from KFDI were there as emcee's and handed out the medals to the children with DS. I thanked them for being there. They seemed to be genuinely humbled and pleased to be there, in fact I think I heard Brian's voice crack just a bit. Good people.

After the walk, the kids played carnival games until the lunch line got a little shorter. I'm not one for waiting in a long line with kids who would rather be playing! All the little kids got tattoos, including Ralph. Somehow Rose wandered off and went through the lunch line on her own. I wonder how she managed this.

Leroy, Rose, Jordan and Thomas each went home with a bag full of prizes, little toys and trinkets. They all said that the games were the best part of the day. But I say, that the very best part of the day was watching all the kids (kids of all ages I should add) play together. There was an authentic atmoshpere of acceptance and respect. I wish you could all experience this. It was a beautiful day.

I dare you!

My son Ralph is amazing and Down Syndrome is just another part of who he is. As a result, I've developed a rather large soft spot for children with DS. It is sad that 90% of babies diagnosed pre-natally with DS are aborted. But did you know that that babies born with DS are routinely abandoned and institutionalized in many counties around the world? There is no future for these children, unless...

There is an organization that is committed to changing hearts and minds about people with Down Syndrome around the world. It starts with proving the beauty and worth of babies and children with DS through international adoption. It continues with developing special education and parental support opportunities around the world. If services and support are available, parents won't feel compelled to give up their disabled children.

In honor of Down syndrome awareness month in October, this organization, Reece's Rainbow, along with many in the blogging community commit to post once each day about Down syndrome awareness. Reece's Rainbow with be posting a DIFFERENT AVAILABLE CHILD each day this month for 31 days! That's 31 different children that will be here for you to see, pray for, and share!

Click on the button above to see all the beautiful children featured this month. I dare you!

Ralph

Within minutes after Ralph was born the midwife said, "I think your son may have Down Syndrome." He was having difficulty breathing, so this didn't seem terribly important at the time. However, James and I have known people with Down Syndrome and we were totally OK with it right from the start. We had faith that our sovereign God placed him in our family by design.

We have had more heartache than I can describe in the past 17 months since Ralph's birth. I've seen him overdosed. I've seen him crash more than once. And as terrible as the difficult times are, nothing outweighs the joy that he has brought to our family.

Here he is at one month of age.

And again, one year later.

I often wonder what my pregnancy with Ralph would have been like if I had a pre-natal diagnosis. Would we have been encouraged to abort? Would we have been devastated? Would we have worried? I don't know.

I do know that 90% of women with a pre-natal diagnosis of Down Syndrome abort their babies. In my opinion there is a poverty of thinking in this. Must we make it through our lives without difficulty and pain to be fulfilled? We end up sacrificing authentic joy and meaningful life lessons. I could go on, but not today.

I've heard many wonderful things about people with Down Syndrome - they are so happy, they are angels and so on. These are generalizations. I'm certain there are elements of truth in these sayings but above all people with Down Syndrome are individuals with unique gifts, talents, hopes and dreams.

I'm so very thankful that Ralph is a part of our family. I am just getting to know him, but here is my take: He has taught our family all about acceptance of people with and without disabilities. He holds no grudges. He knows how to celebrate. He loves without fear. He takes his time. He makes people happy. He is so many things that I wish to be.

Rose and DS Awareness Month

She has her own sense of style - dig those tights! She was sitting with me as I was reading the blogs on my list today and she noticed the Ban the 'R' word button. She got a little bent out of shape about this since her name starts with R. I tried to explain, but she is still not happy about it!

I'm so happy that it is now October - the best month of the year! I love the cool crisp mornings and the warm sunny afternoons. October is also Down Syndrome awareness month. I am accepting a challenge to blog everyday for the month of October to raise awareness of Down syndrome (a.k.a. Trisomy 21). The challenge is called 31 for 21! So check back each day to see if I am still on the wagon.