February 2012

"I know God will not give me more than I can bear.

I just wish he didn't trust me so much."

~ Mother Theresa

Dearest Beloved Friends,

As you know, I love quotes that make me smile but when I read this one I knew just the picture I had to put with it...

"Go forward in life with a twinkle in your eye and a smile

on your face, but with great purpose in heart."
~ Gordon B.  Hinckley

Eme and her proud big sister Adysen.

Now if these sweet daughters of of dear Lani Leonard who is our Chapter Leader in Flagstaff, don't have a "twinkle" in their eyes, I don't know who does! Their smiles remind me that I want to tell you about a wonderful gift I was given but first I want to make sure you know about our wonderful upcoming events...

Flagstaff Chapter Monthly Parent Meeting

Valentine's Day Celebration

Thursday, February 16, 2012  

6:00 pm -8:00 pm

Come out and celebrate Valentine's Day and friendship with us! There will be crafts for the kids and socializing for the adults, and treats for all to enjoy! Hope to see you all for a night of fun and don't forget to speak the word!

St. Pius X Center (Catholic Church)

2257 E. Cedar Ave

 Flagstaff, AZ 86004

Respite Provided (Must RSVP)

RSVP: Lanileonard@sharingds.org

Westside Chapter Monthly Meeting

TRANSITIONS

Presented by Parent Information Network Services (PINS) Specialist

Jill Castle

Thursday, February 16th, 2012 

6-8 pm

RSVP: Jamie@sharingds.org 

It is always a little frightening as our children start transitioning to a new phase of their lives; preschool, high school, and beyond.  You will love hearing from dear Jill Castle who is with the Parent Information Network Services (PINS) who will join us to discuss what transitions will take place with our beautiful children when these changes come to their lives.  You won't want to miss this meeting. Make sure you RSVP to reserve your space for respite care.

------------------------------------------

DOWN SYNDROME RESEARCH PROJECT

East Valley Chapter Monthly Parent Meeting

Javier Cárdenas, MD

Information and Invitation to Participate in a Research Study for Individuals with Down Syndrome, who are ages 18-30.

The Research Study is in Regards to Cognitive Development 

& Medications to Benefit Individuals with Down Syndrome

Thursday, February 23, 2012

7:00 pm - 9:00 pm

Mesa Student Services Building

1025 N. Country Club, Mesa, AZ 

(South of Brown Road)

RSVP: info@sharingds.org

Free childcare provided (must RSVP)

Adorable Bryce Dean

Dr. Seltzer and Dr. Cardenas are two dear doctors whom I truly respect.  They will present information on the latest Down syndrome research and they will give us information on how to participate in the research if we would like to. I know this is a meeting you won't want to miss. 

Over the years there has been much controversy among parents regarding various treatments that claim to enhance the cognitive development for children with Down syndrome. 

For me it began 28 years ago when David was just 4-months old. There were many parents who encouraged Curt and me to use what was then the popular drug therapy for our son.  We were told if we gave these injections to our son, he would improve in his cognitive development. I was still a new parent who was struggling with the label that had been given to my son of "mentally retarded" (The words of that day). It broke my heart every time I thought of what his life might be like because of him having Down syndrome.  I was anxious to do anything I could that might help him.  

David as a newborn

So Curt and I decided to make the long drive from Tootle, Utah, to California, with our five little ones (ages 4 months to 7 years) so we could hear the lecture that was being presented by the doctor from Germany who had invented this drug therapy.

I remember sitting in the room with many other parents and I literally hung on to every single word the doctor spoke.  As he described the effects of what this drug could do for my son, it sounded like a miracle drug and I was so amazed. I could tell this doctor was sincere and heart-felt and I wanted to believe this could be what my son needed.

But although his words were impressive and the parent's testimonials made me want to help my son, the more I learned, the more uncomfortable I became.  The doctor explained that the serum parents were injecting into their children was made from the "fetal brain cells of sheep."  That bothered me.  I also learned that the FDA did not approve this therapy and that made me even more uncomfortable.

I learned that because the drug was illegal in the U.S. if parents wanted to obtain the drug they would have to go out of the country or have it shipped to them. Either way I saw more red flags warning me to be careful.

My husband Curt is a dentist and he has a more clinical and scientific way of looking at things, but I tend to go by the feelings in my heart.  Yet even with all of this, I so wanted to believe there was something I could do to help my baby. And the testimonials sounded so convincing. My heart struggled, trying to know if this would be right for my son.

At the end of the lecture, came a time for questions and answers, so I raised my hand and asked, "Have you ever lost a child, due to this therapy?"  The room became silent as if everyone wanted to hear the answer to that question.

The Doctor looked at me and calmly said, "Just one."   He then went on to tell how great he felt this therapy was as it benefited children with Down syndrome. I do not know what the other parents there that day did, but I knew I had my answer. I knew in my heart of hearts "just one" was "one too many" for me.

That was in August of 1984 and in the 28 years since that time, I have seen many popular "therapies" come and go. Some were vitamin therapies, while others therapies urged parents to give their children the drug, Peracitim to aide with memory. (Peracitim was a drug used in Germany to treat patients with Alzheimer's and Dementia, but not one used in the U.S. for that purpose.)

The one thing these therapies all had in common was they all claimed that if used, they would enhance cognitive development of children with Down syndrome. The second thing they had in common was they had not been tested or approved of by the FDA (Federal Drug Administration).

Now I tell you all of this because I truly am excited to have these two dear doctors come to share with us. I believe this current research is exactly what needs to be done. That way, if they are able to create a drug that will enhance the learning capacity of our children we will know that the research was scientifically monitored in a controlled environment, using a double blind study. 

It will also have been done where the safety of the participants who had Down syndrome was of the utmost importance.  Then, if and when they do come up with such a drug, parents will know it is safe for their children to use.

Again, Dr. Seltzer and Dr. Cárdenas are two physicians for whom I have the highest respect and I know they will answer any questions you may have regarding what outcomes they are seeking. Again they are specifically looking for individual's ages 18-30 who have Down syndrome to be considered to be participate in this research program.  So come to the meeting to learn more about this research program, both about what they have discovered so far and how to participate if you would like to.

Who could have thought that it would be one tiny little extra 21st chromosome that would be the reason I have completely fallen head over heels in love with my son?  David is truly my finest teacher. But I know that as we learn more we will know in our heads and in our hearts what is right for our children.

Well, anyway...I have rambled on for long enough, but before I close I did want to tell you about the sweetest gift I have ever received. At Christmas my children gave me a book I call, "Then and Now."

What they didn't know was that December had been an especially depressing month for me. I was missing my mom and my beloved mother-in-law. I hated getting old, knowing I was turning 60 in January. It was obvious to me how it seemed Old Father Time and Mother Nature were ganging up on me bringing changes to my body I neither wanted nor liked.

Sugar Mama (my mother-in-law) and David

My mom and me.

I loved that I had inherited some good things from my late mother including her faith in God and in the power of prayer. She also gave me my enthusiasm and love for life and all people. She is the one who taught me to serve. But I also inherited some things I was not as crazy about, namely my double chin and those pesky chin hairs that seem to spout up where you least want them.

As if that was not bad enough then some weeks later I ran into a sweet boy who was now about 9, but whom I had also taught when he was five-years old.  He was cute and gave me a big hug and was chatting with me. But then he stood as if he was staring at my head. I felt that old uncomfortable feeling, wondering if he too had spotted one of those rogue chin hairs.

But his comment to me was different. But he too sounded confused when he innocently stated, "Mrs. Johnson...when you were my teacher, your hair was brown!" (Thanks Brandon!) 

I share this with you because there is something you should know. That one day you too will grow old like me. You will feel young in your heart but others will see the age. It might make you sad but then one day per perhaps then your children will give you a gift like my children gave me to me.  It is a book I call, "Then and Now." It will remind you that the gift of Time is the most precious gift of all and you will be thankful for each day of your journey.

Happy Valentine's Day and know you are loved!

With all my love,                      

"David's Mom"

      (aka Gina Johnson)

Time is a gift, given to you, given to give you the time you need,

 the time you need to have the time of your life. " 
~ Norton Juster

The Johnson Family

"Then and Now"

                                    Jonathan Parker Bradshaw