Well, I missed posting about Down syndrome on Friday.....I have an excuse. I am busy doing the last minute details for the UDSF Conference so I have been immersed in stuff related to the topic. One of the best way to honor Down Syndrome Month is to hang out with awesome people and learn how to advocate and parent our children better. I am grateful for the friends I have only met because our children share the same extra little something!
Oct. 10
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| Jena and Kaitlyn Richardson at a state Special Olympic Swim Meet |
It's Day 10 of National Down Syndrome Awareness Month (don't count my posts because I am not going to hit every day.)
One day when Jena was 13 or so, she told me there was a new boy in her class that had a certain syndrome. After we talked about the new boy, I asked her if she knew anyone else who had a syndrome. She gave me a funny look and said, "Of course, Down syndrome". So I asked her what it is like to have Down syndrome. She told me "it was good, because..." and then began to list her many friends with Down syndrome and all of the activities she liked like bowling, swimming, basketball (yay, Special Olympics) and reading and theatre. I then asked her if there was anything hard about Down syndrome and she immediately said, "Yes, tests!" And there you have it, folks, life is good and tests are hard. That is a peek Jena Hall's life with Down syndrome.
Oct. 11
I reposted an article about Facts about Down syndrome
Oct. 17
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| Her "missionary" picture |
Not keeping up well with the National Down Syndrome Awareness Month......
I am sure one of the things I thought Jena would not do when I held her in my arms 20 years ago is serve a mission for the LDS Church at 19 years old. I knew that we might be able to take her with us when we served as a LDS senior couple but not at 19.
How proud we are of her determination to serve at 19 years old, the youngest young women can serve! It has been and continues to be a great opportunity for her and for those she comes in contact with.
Can't find a picture of the DI but she works hard there too and loves the many friends she has there.
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| First day last year at the Church History Museum Her smile says it all |
Oct. 17
Twenty years ago today, Gary and I were told that Jena's birth parents had selected us to parent this sweet baby girl. We were in Texas and she was three weeks old living in Las Vegas. We hadn't even seen a picture of her.
The next day or so we received a packet of health information about her (still no picture). The state of Texas required that we meet with our own medical provider and review all relevant health information prior to allowing her to come into the state of Texas for adoption. Now remember at this time we had four children ranging in ages from 6 to 13. That alone was fairly unusual in our area of Texas (outside members of our Church). Our youngest daughter had just had major hip surgery 7 months prior to this and our youngest son had severe asthma and allergies and was consistently developing lung infections. We saw our family practice doctor OFTEN usually after nights of no sleeping and days of coughing and running noses, etc.--you know--motherhood at its best.
In contrast, our family practice doctor who I loved was married to a cardiologist and they had one teen age son who attended a very prestigious private school in the Dallas area. So I assumed he would think we were nuts--
Dr. Henry knew that we were planning to adopting again and had told us that he would meet during his lunch on any day that we needed his review of paperwork. He was as good as his word and I met with him the next day in his office and simply handed him the file which he began to review. He would stop and explain bits and pieces of her history and also the small hole in her heart. He tested what I knew and then gave me more information. Then he closed the chart and said he felt comfortable signing that I understood....without making one comment about her having Down syndrome. I wondered if he had missed that page! So I asked, "What do you think about her having Down syndrome?" (He was the first person we asked told we were adopting a child with DS.) and he said, "Judy, I have known you long enough to know that you wouldn't bring a file in without having done a lot of reading and thinking about something like that. Do you have any questions?" He was right, he didn't really have the answers for all the future worries and fears that I had. And then he said something that I will never forget, "Judy, I can't decide if this is the right child for you and Gary. Only you can decide that. But I can promise you if you do decide to parent her, whatever you give to her she will return threefold to you and your family....and I and my staff will be there for the whole thing. She will quickly become one of our favorite patients.
He was right. Jena was a office favorite and if I brought a another child in without Jena, there were complaints. When we prepared to move right before she turned 2, there were tears from all of the nurses and office staff who said they felt jilted as they won't see her grow up.
And he was also right about Jena--everything we have given to her , she has returned to us threefold and more. I wish that every new mom got to hear that message from their doctor along with the diagnosis. It won't take away the shock and fears but it would allow a place for hope and that is all you need to start.
(And this is the first year I really put the connection between National Down Syndrome Awareness Month and it being the month we heard about Jena, were selected by her birth parents, got to meet her in Las Vegas as well as her birth parents and then four days later got to bring her home. That makes October a very special month.) AND STILL WE HADN'T SEEN A PICTURE OF HER!
Oct. 21st:
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| Jena in fourth grade |
During the days we were considering whether adopting Jena was the right thing for our family, I read a lot about Down syndrome--everything I could find. Of course, I didn't find the answer there but in my heart and head came many bits and pieces of revelation and the absolute conviction that she was the child meant to be our daughter and she happened to have Down syndrome. One feeling that was very strong was that we would not have to parent her alone but there would always be angels helping us along the way. It was a very profound feeling and for many years we gave angel statues to teachers, therapists and others who we felt were part of that force. But sometimes those angels were 10 year old boys.
The story as I remember it: Jena had the privilege of attending Bluff Ridge Elementary School, our neighborhood school for her three years of preschool and her 7 years of elementary school. Most of her experiences with classmates were great. Her classmates knew her and she was part of them.
One day in 4th grade, the teacher stepped out of the room on a errand while all the students were working at their desks. A boy new to the school got out of his seat for some reason and happened to notice the work Jena was doing was different than the rest of the class. "Hey, Jena is doing baby work." and other things. The teacher in the hallway heard some unusual sounds and walked into the room to see one young man had backed the boy against the wall and three or four other young men were surrounding Jena's desk comforting her. She heard the young man say something like"Don't ever say anything to her again. She works harder than all of us to do her work."
These were 10 year old boys and they were her angel protectors that day. They have grown up to be great young adults--no surprise--and continue to value their friendships with Jena.
No one likes to have their child made fun of and it was a hard experience for Jena. The teacher cried when she shared it with me and I cried--both in sadness and hurt for Jena but with gratitude for classmates who stood up and defended her. That is how life can be when you love someone with Down syndrome--there are some hard things but the amazing moments are ever present and life confirming.
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