Thursday, October 29, 2009

One for Down Syndrome Awareness


October is soon coming to a close and I have yet to post something to contribute to Down Syndrome Awareness month.  I have been thinking about what I might say... so I started looking through the many articles I have collected over the years that had anything to do with down syndrome.  Some make me so angry and others put a smile on my face. 
In March 1995 there was an article in our local newspaper about the advancements in dectecting down syndrome in the unborn fetus.  I read the article which began like this...

"A Utah doctor has pioneered a technique for safely determining whether an unborn child carries the genetic burden of Down syndrome.
Down syndrome is a frequently severe form of mental retardation. Often accompanied by physical debilities, it is often linked to the age of the mother. The older the woman, the more likely she is to have a Down syndrome child.Because Down syndrome is one of the great tragedies that can strike a family, many pregnant women want to know whether their unborn children have the disorder. But until now some - even high-risk women in their 40s - were reluctant to use the only technique that could give them answers."

I have highlighted the part that got my blood boiling.  I seriously called the Deseret News and asked If I could please speak to Joseph Bauman.  I let the guy have it!  I told him in no way was my daughter a tragedy! That she was the best thing that had ever happened to me and my entire family.  He continued to disagree with me.  After arguing with him for about10 minutes I decided he was not worth my time.  Unfortunately, his perception of down syndrome is shared with many as our little angels are being aborted every day. Sad.

On a more upliftiing note... I am sure you have all read and heard about Gene Stallings, former Alabama football coach, who had a son with down syndrome.  He is a great guy and has many uplifting stories.  Here is a link to an article in People Magazine from 1998  http://www.people.com/people/archive/article/0,,20124379,00.html
Since then his son Johnny passed away.  Gene has since shared many more stories of how Johnny has blessed his life.  He has done radio interviews that are worth listening to.

 23 years ago my beautiful baby girl showed up with a little something extra...a simple little chromosome. Kristen has taken us on a journey, one that wasn't planned or even expected.   There has been obsticles and trials each of which Kristen has met with bravery and dignity.   We know that Kristen was placed in our home and in our hearts for a very special purpose.  Our lives have been enriched by all the special gifts Kristen has brought with her.   Kristen is brave and she is beautiful.  We are forever changed for having her in our family.   Her presence has filled our home with much happiness.

The picture is Kristen at 2 1/2 years just a few months before her first leukemia diagnosis.  It was a sad day when that beautiful blonde hair began to fall out.

Friday, October 23, 2009

and life goes on....

Kristen and I are home tonight. We have been spending most of our days and some nights at my mother's house.  We have been rather busy the past 2 weeks.  Not hardly time to even gather my thoughts and realize what just happened.  Since my dad passed away unexpectedly 11 days ago, everything has been almost like a dream.  I seriously wish someone would pinch me and wake me up.  We are all almost like walking zombies.  When we get the chance to sleep, we can't.  Our minds quickly fill with thoughts and memories and wonders of how we really need to find a "new normal" but we just can't.  My dad was such a big part of our lives.  We would talk to him at least one time and sometimes 2 0r 3 times every day.  We would visit him or he would come visit us once or twice during the week and every Sunday at 4pm you would find us there at his house.  He truly loved Kristen and would do anything for her.  I remember calling him a little over a year ago to tell him that Kristen's leukemia had returned.  First he said a few swear words and then the phone went silent and I knew the tears were flowing.  My dad worked for the county sheriffs office for almost 30 years. He was well respected in the community and at work.  It was always a treat as a young girl to get in his police car and turn the sirens on.  My dad taught me many life lessons of which I will always be grateful for.  He was a tough guy and not just demanded respect but expected it.  Not only did  I need to respect my parents, but that my kids respected me and that we respected the grocery store clerk or the waiter or waitress.  He never thought he was better than anyone else.  He could have lived in a larger house or driven a more expensive car, but he chose to share what he had with others.  You always knew where you stood with my father.  He taught me toWork before you play and save before you spend.    Although my dad died unexpectedly, I believe he had no unfinished business, no regrets and he lived a good life.

Kristen was taken back by the death of her grandpa.  I told her that her grandpa had died.  She keeps asking the question, "Why?" She asks me several times a day, "Where's Grandpa?" I tell her and she says, "Oh!" Then an hour later the same questions are asked again.  As we entered the mortuary she pulled back.  I held her hand and asked her if she wanted to see her grandpa.  She said NO! She could see the casket across the room and she quickly ran the opposite direction.  I found a couch for her to sit on that was across the room.  She was comfortable there and was looking from a distance.  Kristen sat quietly during the funeral.  As we proceeded to the cemetery she continued to ask the same question..."where's grandpa?"
I hope she is ok.

Life goes on... My youngest granddaughter turned one this past week. We took her and her brother to Build a Bear. Of course Kristen chose the Jonas Brothers dog.




Saturday, October 17, 2009

Still no words...But a few pictures



Kristen and her sisters after the funeral

The "Honor Guard"

21 Gun Salute

The Pallbearers (grandsons) paying last respect

Tuesday, October 13, 2009

I really have no words...

Kristen and her Grandpa



My dad, Kristen's grandpa unexpedly passed away yesterday.  I am so thankful we were able to visit with him yesterday morning.  We picked up my mom to take her to the store and my dad walked out to the car, like he always does, gave Kristen a dollar and a high five.  A few hours later he was just gone.  At the moment it appears he had an Abdominal Aortic Aneurysm.  I really cannot even speak, so I thought I would post a couple of pictures for now and just say that I love my dad and I seriously don't know what I am going to do.

Wednesday, October 7, 2009

Another Blood Test

And finally...we have some numbers! Kristen had her monthly blood test today.  I have been waiting for 6 months since she finished treatment for her numbers to start getting into the normal range. Today they are finally there.
For those who get the whole numbers game:
WBC             2.8
HCT              45.3 (I think hers is better than mine)
Platelets        152,000
ANC             2000

Now I just need to keep the little princess well through the winter.  I am a bit concerned about the flu so if you are sick, I really love you and all, but don't come over.  Rude, I know.
Since October is Down Syndrome Awareness month I have been thinking of some things I would love to share.  I have some stories to share, but I will save it for another day. 

Friday, October 2, 2009

"Light the Night"

Tonight was the "Light the Night Walk." Funds raised support the work of hundreds of the world's best and brightest researchers in their search for better therapies and cures for leukemia, lymphoma and myeloma. We had tons of fun!