Friday, December 28, 2007
Christmas Eve day we spent together. We had a different kind of laid back day. Unfortunately, Ryan was sick before Christmas and Kurtis came down with it Christmas Eve day. We hung out, the kids played and watched some TV as Kurtis wasn't feeling all that great, had naps and laid low.
One other piece of information that some of you may not know is that Tom has a new nanny for the boys. Annette and Tom found Alyssa (hope the spelling is OK) through one of the in-home nurses that came for Annette. The nurse knew they were looking for someone and connected them to Alyssa. The Tuesday before Annette died, she called me and told me that Alyssa had agreed to come and work for them. I could tell that she was so very happy and relieved that they had found somone so quickly, especially since she had phoned me, which she hadn't done for a little while. This was, I believe, one of the final pieces that Annette needed to feel at peace that everything was in place for the boys. Alyssa has many wonderful qualifications, she is able to drive the boys places if needed, she has worked with people with special needs and seems to be a perfect fit. She moved in over the past weekend and is slowly getting to know the family.
Tom and the boys are keeping busy during the time off of school. I think having this time is nice as an adjustment period before jumping back into school and work. I also have enjoyed a slower pace at home to reflect, rest, clean, shop and be with my kids. We continue to covet your prayers.
Wishing you the peace of Christmas,
Sunday, December 23, 2007
There is a poem entitled "Welcome to Holland" by Emily Kingsbury that likens the journey of having a child with special needs to a trip. After Annette had Ryan, she became fond of this poem. She also reached out to an internet group that was made up of women (and some men) from all over North America and even the world and became very close friends with them. Together, they shared their journeys. Two of these special women even made the long trip up from Indianna to attend and speak at her funeral on behalf of everyone.
The poem means a lot to many of them. Annette's favourite flower became a tulip because of this poem. Over 25 women from all over Canada and America each sent one single tulip in a bud vase. Together, they made a beautiful arrangement and I know Annette would have been very touched. That is the story behind the stunning table of tulips, which included the poem. Thank you friends, for that wonderful display of flowers, but more importantly for your love for Annette, which was born from the wonderful journey you all share.
WELCOME TO HOLLAND By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And for some, the pain of that will never go away... because the loss of that dream is a significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Wednesday, December 19, 2007
I have many thoughts and things to share with you about the past six days. However, those will need to wait until another day.
For tonight, a sincere thank you and a wish for God's peace.
Sunday, December 16, 2007
Annette went to be with her Lord at 1:00 am this morning, peacefullly. We are grateful for her peace, though we miss her greatly already.
We will post more details as they are made.
Friday, December 14, 2007
"I know the Lord is always with me. I will not be shaken for He is right beside me." (Psalm 16:8)
This past summer, we received the disappointing news that the trial that Annette was on was no longer keeping the cancer at bay. We continued to hope and pray for a miracle through a new trial. This fall proved to be a tougher time for Annette, and she has become very frail and weak. The cancer continued to progress.
We now find ourselves at this time having to share this most difficult news with you. Annette, at present, is comfortably resting, surrounded by her family who loves her dearly. However, it seems her time here is ending.
We have been blessed to have this time to talk and share, laugh and cry together, and cling to the hope that soon she will be healed in heaven.
We spoke about her blog this afternoon. Annette wanted to wish everyone her love. She is so very thankful for all of you and for all of the support she has received over this time.
She is surrounded by her family at home, which is what she wants. Visits aren’t practical for Annette, but we will keep you updated through her blog.
Thank you for all your support, love and prayers.
Annette, Tom, Gord, Lisa and families
Thursday, December 06, 2007
My legs still are the size of tree trunks (and they look like them too). The doctor decided today that the diuretics weren't doing any good so we agreed to stop taking them. Instead I'm too wrap my feet and legs in compression bandages and see how that works. (Chris - I think you suggested that???).
I'm also needing oxygen regularly. That's something I haven't shared here before. I started using oxygen at night about 5 weeks ago. Now I've started needing oxygen day and night all the time. The oxygen helps so much with sleeep and daily activities.
and finally, the other tough thing is that we're losing our nanny. :( She's heading back to school in January and giving it another shot. I'm happy for her but sad for us. We now need to find another nanny - and soon!!
That's all for now. Sorry it's such a short one but Kurtis just came home from scool and I've got to help getting snacks!
Wednesday, November 28, 2007
It's hard to stay still when you're a Mom and you see tons of things to do, but I have to stay still if I want to beat this fatigue and if I ever hope to get the swelling in my legs to go down.
Thank you again for all your support - it continues to mean a lot.
Peace and love,
Sunday, November 25, 2007
Annette is feeling better today and for that we are very thankful. She is much more alert, talking, walking the halls and eating well. We know she is feeling pretty good when she starts bossing Dad and me around :).
I printed all of your prayers and well wishes and left them for her. She is very thankful for all of them. She hopes to return home Monday or Tuesday. She is not able to come and blog yet on her own, but hopes she will be able to soon.
Please continue holding her up.
Lisa, Annette and family.
Genesis 28:15 "I am with you and will watch over you wherever you go...I will not leave you until I have done what I have promised you."
Friday, November 23, 2007
Well, I wish I could come here and post a wonderful update, unfortunately, Annette is still really struggling with extreme fatigue and drowsiness. They are tinkering with her medication, but it must be done carefully and slowly. It appears that she will be there at least through the weekend.
Please pray for patience for her, and that very soon she will be able to come home.
Wednesday, November 21, 2007
It has been a difficult week for Annette.
Last weekend, Annette began experiencing severe symptoms of extreme fatigue, confusion and disorientation. She was taken by her family to the hospital where she had already had a CT scan scheduled for that day.
Her oncologist decided to admit her in order to run some more tests to get to the bottom of the issues.
Today, the results were shared with us and the news was somewhat encouraging. Fortunately, although the cancer has grown, it has not spread to any other major organs that they could see. The disorientation, confusion and extreme fatigue is likely from too much medication in her system.
Annette had radiation 10 days ago to help manage some symptoms. Apparently, when the tumors shrunk, her body no longer needed as much medication to control the pain. When the meds are not used to manage pain, they can cause side-effects. There is a fine balance between medication and pain. If there is more medication than there is pain, that medication will cause side effects. If there is a balance between pain and meds, there will be minimal side effects. So while she was still on the same dose of medictaion, since her tumors had gotten smaller and therefore caused less pain, the excess meds caused these nasty side effects.
We are thankful for this bit of good news and pray for a good leveling out of her meds. We are hoping that she will be able to return home Friday or Saturday.
Today, she seemed to be perking up, even taking a trip to the cafeteria for a hamburger, fries and hagen daz! When we left at 6:00 this evening, she was sitting in the lounge having a conversation with family. Let's pray together that this continues in the right direction.
She and her family are grateful for all your prayers, support and offers of help.
Love, Lisa, Annette and family
"I know the Lord is always with me. I will not be shaken for he is right beside me." (Psalm 16:8)
Friday, November 16, 2007
On a sadder note, we dealt with the first anniversary of my Mom's passing on October 31. I knew it would be sad, but I didn't expect it to hit me so hard again. Grief takes funny turns every now and then, doesn't it. Mom, I hope you know how much we all loved you and how much we miss you now!!
Now for an update and the reason for my leaving the blog empty for so long. I had an appointment last week with a radiation oncologist, on the advice of my chemotherapy oncologist. The purpose of the meeting was "just to meet him" so that he had a face to put with a name in case I ever need him. But, I've also been dealing with two issues that are related to tumors that are behind my chest wall - I've had trouble swallowing food and my voice has been changing and getting gravelly when I read to Kurtis. I mentioned these two issues to the doctor and he immediately said that he could fix those issues with just one big blast of radiation to those tumors. So, before we knew it, I was booked in for Friday for a radiation treatment as he just happened to have some space open.
Well, although the radiation went well at the beginning, it has taken it's toll on me since. I'm very very fatigued - those arms and and legs feel like they weigh 60 lbs each! And actually, that's probably what they do weigh as I'm dealing with some fluid retention in the legs and I have tree-trunks for legs right now.
I'm also very restless right now - pacing back and forth as I don't want want to sit. That's probably from the steroid they put me on when I had the radiation. BUT.. just received notice from the doctor to discontinue the steroid and to continue the diuretic (in order to reduce swellling in the legs). I am starting to feel better as well now....this post has been written over 3 days and now that we're into day 3, I can finally finish it.
My sister just left after coming over to visit and treat me to a "homemade" spa - mani, pedi and massage... wow - what a wonderful treat! Thank you Lisa!!
I'll try to update more later, but for now, let's finally POST this piece!! I obviously missed National Down Syndrome Awareness Week and the pieces I wanted to write about... c'est la vie. Hopefully I'll find time to do them later.
Peace and love,
Friday, November 02, 2007
Here is a link to the information form. http://wrdss.ca/wrdss/docs/buddy_walk_2007.pdf
It also includes a pledge form - this is by no means necessary. Come out even if you don't have any pledges!
So, if you live in the SouthWestern Ontario area, and are looking for something fun to do on Sunday afternoon, come on out!!
I love you Lisa - you're wonderful!
Thursday, November 01, 2007
Annette is having a birthday today- Friday, Novemeber 2.
Now anyone who knows me knows I am a big fan of celebrating the birthday. Weeks before, I am already letting my family know that my birthday’s coming up and how I want to celebrate. Presents are a welcome affair. I don’t get those people who don’t want anyone to know it’s their birthday. I want to shout it from the rooftop. Why? Because they’re fun. Because they’re reason to celebrate. Because it’s a great time to reflect. Because I love presents and cake.
Annette’s birthday gives us pause to do these things. To have fun, reflect and celebrate the gift of Annette.
Annette is not only my dearest (and only) sister and sibling. She is also my friend. She is someone I admire greatly. So many adjectives come to mind when I think of Annette. Here is the short list that pops into my head:
......and just overall FABULOUS!
Annette has struggled over the years with many hurdles and “bumps” on the road. In fact, at times, I think she’s been broadsided by a transport truck more than once. Yet through it all, I have never heard Annette complain.
Through physical and emotional pain. Through countless procedures and surgeries. Through nauseating (that’s an understatement if ever I heard one) and debilitating treatments. Through times of adjustment and learning. She is the bravest person I know and the person I admire most in this world. Her inner strength is amazing. Her perseverance is admirable. Despite it all, she still cares how others are doing. She genuinely feels badly if someone else is hurting. Amazing. I work towards having a fraction of her positive inner strength.
Many people have come to know Annette through her journey with cancer or Trisomy 21 (Down Syndrome). She is touching many lives. However, she does not let cancer define who she is. It is just like Annette to use this obstacle in her life and turn into a blessing and something that would glorify God.
Annette, on your **mrsdionf** (hand covering mouth) birthday, I wish you strength, peace and all the love you deserve. I love you.
So now I ask you all to come out of lurkdom and tell Annette that you love her too! Let’s make this the biggest blogging birthday party out there! Say hello, happy birthday, tell her what you love about her… your choice. Let’s show her how much she is loved!
(the much younger sister – sorry, didn’t think you’d get through a birthday without that did you?)
Tuesday, October 23, 2007
It all happened so quickly.... I had been thinking for a while about finding someone to help out after school - preferably from say 2:00 to 8:00. This was so the person could do a little light housework, help out with homework and the kids and the dinner rush and then help out during the bedtime routine. So, yeah, where do find someone like that? Nowhere... that's where.
Backtrack a bit... Tom's parents were in Austria, visiting family and friends. They were visiting a friend who had a daughter who had been studying in Toronto (early childhood education, by the way) and not enjoying it at all. She wanted to quit that but still wanted to stay in Canada for the year. So she needed a job - where and what kind of job would she get? She didn't want to stay in Toronto and she did have some relatives elsewhere. Did Tom's parents' know of anyone who would hire her? No.. unfortunately they didn't.
Fast forward to the drive home from the airport where Tom and his parents connect and Tom mentions that we're looking for someone to help with the kids after school and hmm... it sounds like a good match, doesn't it? We need someone to help with kids at odd hours; she needs a job and a place to live.
And about 1.5 weeks later, we have a live-in nanny. At first Kurtis wasn't too thrilled about having her here as it meant giving up his bedroom. However, once he saw the bedroom he would be getting (the VERY unused exercise room), he seemed much happier. Ryan has fallen in love with her already.... at dinner the other day, he insisted that she sit beside him.
So, we're getting to know each other still, but so far so good. She is a lovely girl and I think it will work out OK.
Thank you Lord for answering this prayer so quickly and so perfectly!
Thursday, October 18, 2007
Back row: Lisa, Nicole and Marley, Jan and Nash, Tara Marie
Me with Tara's Emma Sage and Nicole's Tarenne...the girls were being silly and just not cooperating with those smiles!
Wednesday, October 17, 2007
THINK OF ME FIRST AS A PERSON
You look at me with pity,
concern or indifference,
for I am a retarded child.
But you only see the outside of me.
If I could express myself,
I would tell you what I am inside.
I am very much like you.
I feel pain and hunger.
I cannot ask politelyfor a glass of water,
but I knowthe parched dry feeling of thirst,
I itch when mosquitoes bite mea
nd run when I see a bee.
I feel cozy drinking cocoa in the kitchen
when a snowstorm blusters outside.
I had a heaviness insidew
hen I left my mother
to board the minibus for school.
My eyes darted back and forth,
seeking escape,but knowing there was none.
When my sister takes me to the
playground and children call me names,
she cries and takes me home.
Then I feel warm and dizzy,
and it is hard for me to breathe.
Mother's eyes are wet; she holds me
and tells me a story, and
I forget the children's jeers.
When I dress myself and Mother
pats my head, saying, "Good job,
Jim!" I feel...big. As big as Greg,
who goes to second grade.
I am a child -in age now, and in ability always.
I find the touch of soft toys
and snuggly dogs comforting.
I love the toys of childhood -a kite, a balloon, a wagon to pull.
I like to let go at the top of a slide
and after dizzy seconds find myself at
I like sleds on soft snow,
the wetness of rain on my forehead.
Though it is comfortable to be babied,
I am less dependent
when people treat me as a big boy.
I don't want their sympathy;
I want their respect for what I can do.
I am slow, and many things
you take for granted are hard for me.
I can hardly understand
what "tomorrow" means.
It took me months to learn
to pedal the tall blue tricycle,
but I was so proud when at last
both feet pedaled in the same
direction and the wheels went forward.
How happy I waswhen I turned on the right faucet
to get a drink of water.
I didn't want to ever turn it off.
If I can learn at my own pace and still
be accepted, I can fit into a world
where slowness is suspect.
Think of me first as a person,
who hurts and loves and feels joy.
And know I am a child to encourage
Smile, and say hello
-even that is enough.
- Rita Dranginis
Monday, October 15, 2007
Monday, October 08, 2007
I haven't been feeling great. I was battling a cold that seemed to be making the rounds. I think it was dragging me down as far as fatigue goes and I was coughing a bit. But I seemed to have successfully battled it without actually getting it! We were also tinkering with the pain medication I'm on and it left me a bit out of sorts and just not exactly excited about blogging. I'm feeling much better over the past 4 days so you just may see more posts from me!
Friday, October 05, 2007
Kurtis joined the cross country running team at his school about a month ago. There are no try-outs or cuts - everyone who wants to run can. I had encouraged him to join - thinking it was the track and field team. With Kurtis's height, I'm thinking he may be good at the jumps. When it turned out to be the cross country team, I told him he didn't have to stick with it if he didn't enjoy it as it wasn't what we thought he had signed up for. But I thought he might like it as he does like to run - playing tag is one of his favourite things to do!
And right from the beginning he surprised me. The very first day of running was hard for him....but he kept going (either walking or running) and forced himself to run more because as he told me.."our coach said that if we run more now, it'll be easier to run next time. So I forced myself to run, Mom, even when I got a cramp in my side".
On the first race, they took off after the "rabbit".... and I mean they flew. They were running so fast I knew Kurtis (and many others) would hit the wall. Well, he didn't hit the wall badly, but he did slow down significantly and ended up middle of the pack. But, I was so proud of him for even doing this activity and for finishing the race without walking. Considering how fast he had started out, I expected him to be walking to the end. Again, his determination amazed me... "Mom, I wasn't going to walk, no matter how tired I was and I was very tired".
The last race was this past Thursday. And it was hot outside. I felt sorry for all those kids having to run in that heat. I was eagerly watching Kurtis start the race in the middle of sooooo many grade 3 boys! I went quickly to the finish line and waited for Kurtis. They started coming in. The superfast boy won again - he has won all 3 races and was running as fast as when he started out. Some more boys... then the boys from Kurtis's school came in. Hmmm.. Kurtis should be done by now.... he's usually in the middle of the pack, so where is he? Finally I see him approach the line. But something is wrong. He is very upset. After he crosses the finish line and I can talk to him, he is very upset and between tears and huge breaths, he tells me he fell - twice! He shows me his bleeding and scratched up knee, hand and arm. Finally after he calms down he says "but at least I didn't finish last Mom!". Yup - you're right there! And thanks for the laugh kid! In fact, he still actually did quite good. And I think the wounds (emotional and physical) have healed.
As I said before, I was so proud of Kurtis for joining the cross country team. I think a big part of it is because it's something I never did - or rather never could do! When I watch all these little children run and run, I really am in awe!
Monday, September 24, 2007
I was amazed at the number of people who came out and really, really touched by some people who I didn't expect to see there. I was so happy to see my friend, Meta, there as well - and we included her in our prayers. Meta is also fighting this beast and is undergoing chemotherapy treatments.
I am also very thankful to our pastor who did a wonderful job, considering he's never done a prayer service like this before. Our church doesn't normally have prayer services like this, so we were both in unchartered waters a bit.
But, he started off the service with these words to this effect that I thought were very wise:
"This service is not happening out of a spirit of desperation, as if 'well, nothing has worked so far, so I guess we have to pray to God for a miracle'. No....I believe it is the work of God that brings us to a point of expressing our trust in God....We are here tonight to pray to God because he hears and answers prayer. Praying for healing is part of that. Praying for his daily strength, peace and blessing is also part of that. We come here tonight in hope.....
We sang a few of my favourite, traditional hymns. My sister reminded me later that we sang "Great is thy Faithfulness" on the exact same day (Sept 23) at almost the exact same time (7:00 pm) last year - the occassion of the celebration of my parents' 45th wedding anniversary. I'm not sure if believe in people who have passed away "being there" at certain times, but if it happens, I'm positive that means my Mom was there with us in spirit.
I was so overwhelmed by all the prayers that were being said. It was difficult at times too, but I felt great comfort in feeling all that energy. At one point, I even felt called to come up to the pulpit area and kneel on the steps. I don't know why. I'm pretty sure that God doesn't listen to prayer more because you're kneeling than if you're sitting, but I felt the urge to go up and kneel and pray. Tom came with me. I was still fairly emotional from the prayers we had just said, when I felt hands on my shoulders. At first I started crying some more when I felt that emotion of these people (and I didn't know who they were) come through me but then I felt an amazing sense of peace wash over me. Wow - was that powerful. Now, you have to remember that I didn't not grow up in an "hallelujah, Praise the Lord" type of church. This type of service and these feelings were new to me. God really was there with us that night.
Then, after the service was over, I was blessed to receive the hugs, kisses, handshakes and wonderful words of many of my family, friends and fellow church goers. That ended the evening perfectly - receiving love from so many people. This will keep me going for a long while.
My Pastor provided a list of specific prayer requests for those who were there that night. If you pray and would like something to pray for specifically, here's what was provided:
- for healing: physical, we dare to ask for a miracle
- for perserverance: continuing to live fully to the Lord, even in sickness
- for character: for being an example and encouragement to others, to lead others to trust in the Lord
- for hope - for today, tomorrow and forever.
Tuesday, September 18, 2007
Afterwards I got to thinking about this short exchange. I think views like hers are more the norm than not. I know that before I had Ryan I would view families who had a disabled child with a small amount of pity. That was then. I know better now. BUT...how can I work to change the views of other people so that they don't think what this woman and I thought? What can I do so that, when I inform someone that I have a child with Down syndrome, that they just continue the conversation as if it's a non-issue? A huge part of it is living our lives as full participants in our various communities. We won't hide.... we'll treat Ryan like we treat Kurtis... and that means regular swimming lessons, participation in church, eating out at restaurants, etc etc. In other words.... leading a regular life. People will see that individuals with Down syndrome can lead a regular life.
I remember the first time I saw someone with Down syndrome smoking. I have to confess that my first reaction was that someone should take those away from her. And then I gave myself a mental kick in the butt and realized that she is fully entitled to smoke if she so wants - she's an adult and can do what she wants - and that includes smoking. There are so many other things we can do too. Raise awareness by having pictures and stories in the papers. Have people with DS working in places where they see a lot of people (ie grocery store). And very importantly, work with the medical profession - the ones who are, unfortunately, the first line of information to prospective parents AND who unfortunately, mostly have an outdated doom-and-gloom view of people with DS without even knowing anyone with DS. And then today, I read this article.
I know I'm copying a lot of articles here, but I think they are worth the read. This speech was presented at the NDSC Conference on August 5, 2007. It is a long article, but well worth it.
by Patricia E. Bauer
Long ago, my husband and I thought we had the world figured out. We had good educations, good jobs, nice offices, even preferential parking spaces. We thought we had it made.
Then, a little more than 23 years ago, Margaret showed up, providing us with the most important learning experience of our lives. Our first order of business was trying to figure out this whole Down syndrome thing, of course, but ultimately it dawned on us that the effect of an extra chromosome here or there was the least of what we needed to learn. Over time, we came to reevaluate our core values, and to understand that much of what we had been led to believe – about what makes a family happy, what makes a life worthwhile — was misguided.
I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.
Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it.
Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. All pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge — women to terminate their pregnancies, which is in fact what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally.
Let me just underscore that, to make sure we’re all on the same page. Studies have shown that nine out of ten pregnancies in which there is a prenatal diagnosis of Down syndrome end in termination.
This is a painful topic to talk about, I recognize, and it’s made more painful by the very ironic fact that these recommendations have come at a time when people with disabilities have more legal protections than ever before.
Not only that, people with Down syndrome are in general healthier and having a better quality of life than at any time in history. This is the first generation to benefit from early intervention, inclusion, improved health care and better educational opportunities, and they are blowing up yesterday’s old data. Increasingly, they’re completing high school, getting jobs, living more independently. Some are driving; some are getting married. Imagine: I met a woman with Down syndrome the other day who was part of a relay team that swam the English Channel. These are people who are living full lives and making contributions to their communities.
We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And just the other day, self-advocate Audrey Wagnon delivered the same message in her speech to the full NDSC convention. Here’s how she said it: “I’m having the best life ever!”
But – oddly — we live in a time in history in which the faces of our loved ones have come to symbolize something in the public mind that is very much at odds with our life experience. People see our family members and think what they’ve been taught to think. They think our children are tragedies. Yet we who are privileged to live with them know that, despite some of the frustrations of day-to-day existence, our lives are also filled with possibility and love and joy.
So why the disconnect between our lives and society’s vision of them? Perhaps we should start by acknowledging the obvious: prejudices, biases and fears of disability run deep in our society, nourished by years of history and reinforced among other things by ignorance, gaps in the healthcare and educational systems and negative media images.
Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.
Among other things, they fear that the financial burden would crush them or that they wouldn’t be able to get a decent education for their child. They’re afraid, too, that they would be held accountable for having a child with a disability, and that there would be people who would blame them for failing to prevent the birth of such a child. They are afraid of stigma and ridicule. Sadly, these are not unreasonable fears.
But that’s only one piece of the puzzle we face. Here are few more:
– Puzzle piece number two. Prospective parents are suing their doctors if they don’t get a so-called “perfect baby,” leading to skyrocketing insurance costs and doctors who want to run every test possible to prevent litigation. Not long ago, a Florida jury awarded a couple more than $20 million because their doctor failed to warn them that their son would be born with a genetic syndrome.
– Puzzle piece number three. Physicians, nurses and other health care providers are giving their patients negative, outdated, biased or incomplete information about Down syndrome, depriving them of the ability to make their own informed choices based on accurate information instead of negative stereotypes.
– Puzzle piece number four. Financial demands on doctors mean they have to process more and more patients in less and less time, giving them scant opportunity to discuss tests and deliver diagnoses in a sensitive, thoughtful compassionate way. Women are reporting that these rushed interactions feel coercive.
– Puzzle piece number five. Medical schools don’t offer clinical training about people with intellectual disabilities.
– Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.
All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like ours impose an unwanted cost on society. Somehow, without our knowledge or participation, a cost-benefit analysis has been applied to our children and they aren’t measuring up.
You may be wondering: How did we ever get to this point?
For the purposes of this conversation, let’s start back in the ‘50s. Most of you won’t remember it, but people with disabilities then had not been granted the right to go to public school. Doctors didn’t think that people with intellectual disabilities were capable of learning, and routinely recommended that they be sent away to institutions. During the ’50s in this country, an estimated half a million children were institutionalized, often under the most abusive and degrading conditions.
So when a French geneticist named Jerome Lejeune discovered the extra 21st chromosome that causes Down syndrome in the late ’50s, his discovery caused many to hope that treatments would soon be found. As you of course know, that didn’t happen. A far more straightforward task, from a scientific point of view, was the development of tests that could be used for prenatal diagnostics. Those tests really took off after abortion was legalized in 1973.
Doctors and scientists took a public role in recasting the definition of healthy fetuses and legitimate abortions, and what were called “therapeutic” abortions came to be regarded as a legitimate and desirable way to prevent or eliminate Down syndrome. It was in some ways just an accident of history that these so-called therapeutic abortions became well entrenched before our society was able to see what individuals with Down syndrome, given a chance, could do.
It is, as author Michael Berube has written, a bitter paradox: even though we have barely begun to explore the ways in which we could include people with disabilities in our society, we are devoting precious time and resources to developing better ways of spotting and eliminating these people before they are born.
Particularly troubling is the fact that this shift – to preventing Down syndrome by attempting to prevent the births of children who have it – was largely engineered by members of the healing professions, the very people who are charged with the responsibility of protecting vulnerable populations.
So now we are left with a harsh reality indeed. The implicit message the American College of Obstetricians & Gynecologists seems to be sending is this: even though racial, cultural and ethnic diversity are valued and supported in our society, genetic diversity is not. It seems that it’s more important to be “normal” than to be “human.” Or maybe we should view this as less a philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for business to deliver only babies that the medical profession calls “good outcomes.”
Somehow, along the way, the professional organization representing these doctors has failed to notice that they have embarked upon the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.
I know we empathize with today’s young parents. Their finances are limited. They have grown up in an era of fear, taught to be afraid of strangers and wary of the strange. In the obstetrician’s office they trade their fears for the illusion of control — but in the process they are giving away much of what defines America at its best: a society that assumes responsibility for those who are vulnerable, a society that accepts those who are different, a society marked by generosity, liberty and freedom of thought.
These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem unfriendly, whether we had “the test.” Or even why we didn’t have “the test.” When medical professionals look at our beloved children and say “that shouldn’t have happened.”
Let’s face it: people with Down syndrome have a catastrophic PR problem. The doom and gloom talk has gone largely unchallenged for far too long.
It gives me great pain to tell you all this, because I know you love your family members as much as my husband and my son and I love Margaret. I know, too, that you share our vision that people with Down syndrome are valued, contributing and vibrant members of our families and our communities.
We come together at reunions like these to affirm the value of our family members’ lives, secure in the knowledge that their extra chromosome is NOT the most important thing about them. They belong; they dream big dreams; they contribute; they deserve respect. What makes their lives difficult is not their genetic makeup; it’s the uninformed attitudes of others.
We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.
Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:
–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.
–Building relationships with hospitals, and talking with families who have a fresh diagnosis.
– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.
These are great steps, but let’s not stop there. Let’s dream even bigger.
It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.
1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.
2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.
3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.
4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.
5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.
6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?
7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us.
I talked earlier about people who sometimes ask us about whether we had “the test.” Here’s what I think they really want to know. Did you, or would you, choose this person to be in your family? Let me tell you my answer to that question.
When my husband and I decided to have children, we were kids. (Okay, we were in our early 30s. But viewed from a distance, that sure looks young now!) Sure, we had lots of education, degrees and experiences, but there was a lot we didn’t know:
– We didn’t know what it meant to be a parent.
– We didn’t know that there was no such a thing as normal.
– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.
Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned
– No child is “normal” — and neither are we;
– We, like all parents, need to get over the notion of our children meeting some arbitrary standards of perfection that we couldn’t possibly achieve ourselves; and
– We choose our children, and each other, over and over, every day of our lives.
In short, my husband and I have been privileged to share our lives with someone who is a constant reminder of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points are not a good predictor of personal happiness or quality of life.
As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.
But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.
A couple of years ago, a newspaper running a piece I’d written asked for a family photo, including Margaret. I gulped, feeling exposed, and called my husband to ask his thoughts. He said, “Stand tall; run the picture.” We did.
That is my message to all of us: Stand tall; get out the message.
People will listen.
We can do it.
The article talks about what happened, but I'll recap it briefly:
- a woman in Italy was pregnant with twins
- via tests, they found out one of the twins hand Down syndrome, the other did not
- the woman opted to have the child with Down syndrome aborted but leave the other one alone
- due to some medical oversight or mistake (they say the twins shifted positions in between the ultrasound and the abortion), the doctor aborted the "normal" twin and left the one with DS living
- the woman was furious, upset etc etc
- she then had the remaining twin (the one with DS) also aborted
As she was in Italy, the Vatican responded to this situation, calling it what it is: eugenics.
'Culture of perfection' destroying us
Sep 08, 2007 04:30 AM Helen Henderson
An Italian woman who sought to abort one of the twins she was expecting is at the centre of an international furor over society's attitude to children with disabilities.
When she was 18 weeks pregnant, the 38-year-old from Milan was told that one of her twin baby girls had Down syndrome, characterized by an extra chromosome and intellectual disability. She asked doctors to abort that fetus. By mistake, they aborted the other. Subsequently, the second fetus was also aborted.
No surprise that the pro-Vatican L'Osservatore Romano censured the abortions, which were performed in June but made public only last month. But the newspaper also encapsulated the crux of the debate when it said the story exposes "the culture of perfection that imposes the exclusion of all that does not appear beautiful, glowing, positive, captivating.
"What remains is emptiness, the desert of a life without content, though perfectly planned," the newspaper continued.
And there you have it.
In a world where biotechnology and genetic engineering strive for the smartest, the strongest and the most conventionally beautiful, there is less and less room for diversity.
Yet until society embraces diversity, until it willingly and unstintingly makes provision for those who are not cast from the common mould, we will never achieve peace, inwardly or outwardly.
And without peace, we will simply self-destruct – all of us, and sooner rather than later.
Twenty-two years ago, Toronto's Ruth Halperin gave birth to twins. Her daughter Daniella has Down syndrome. Daniella's twin brother Jesse does not.
"It is society that needs to be changed, not the child," says Halperin.
Daniella, who says she loves to dance, is helping at a daycare centre, a work placement that is part of the vocational course she is taking at Seneca College. Jesse is in Holland, doing a semester overseas as part of his training to be a lawyer.
Halperin counts both her twins as blessings.
"Daniella has such a full life," she said in a telephone interview last week as her daughter got ready to welcome friends for a barbeque. She said she is shocked by the news out of Italy, where a fierce public debate is dominating news.
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," one Italian senator is quoted as saying, referring to the philosophy, commonly associated with Nazi Germany, that humankind can be improved through selective reproduction.
Kids with disabilities are experts in wisdom and beauty and fortitude that come from deep inside. They nurture their nurturers against the fear, ignorance and closed minds that seek to block them from belonging.
If biotechnologists were smart, this is what they would be tapping in their race to "enhance" evolution.
The Italian mother-to-be is a victim of the cult of ignorance, spread in language that speaks volumes about attitudes. She is reported to have told the Corriere della Sera that she and her husband are "desperate over this terrible mistake" and were consulting lawyers.
The twin with Down syndrome is variously referred to in stories about the incident as "the sick fetus"and "the wrong twin."
"We must create a different emotional environment, a culture of hope," says Keith Powell, executive director of Community Living Ontario, which advocates for the full inclusion of people identified as having intellectual disabilities. "We need an affirmative action campaign to advance the gifts of people with disabilities."
Let's start right now as individuals to do the right thing.
Helen Henderson's column appears every second Saturday. Read more of her columns at thestar.com/access.
Saturday, September 15, 2007
Sunday, September 23, 1997 at 6:30 pm.
It will be held at First Christian Reformed Church in Guelph
If anyone needs directions, just email me at firstname.lastname@example.org or call me.
This isn't a prayer service just for me, although that will be one of the main reasons for the service. We will also pray for Marisa, and Meta - two women I've met on this journey. We will also focus on expressing our trust in God. As I said, there will be time for individual and small group prayer, but if you're not comfortable speaking in public, don't. (you definitely won't be required to pray in front of the whole congregation up on the pulpit.)
Thursday, September 13, 2007
I knew when I married you that life would never be dull - and it hasn't. It's been an amazing 10 years - some highs and some lows... lots of good times and some bad times. You've made life fun - and we have had some adventures, haven't we? We've been blessed with two wonderful, spirited boys and I thank you for being a good father to them.
I love you Tom! I pray that we have many, many more anniversaries together!
Wednesday, September 12, 2007
Thursday, September 06, 2007
And.. as for the reason for Ryan having two aides.... that was also for a very valid reason and after hearing the reason, I just couldn't argue with it! Anyone who knows Ryan knows that he is a very busy boy... and requires a lot of energy to be with. So, they didn't think it was fair that one EA had Ryan for the entire day while some other EAs had a very "easy" child. The EA we had over the past two years was a bundle of energy and apparently could handle Ryan for the entire day - but not all people can. So, I really couldn't argue with that logic as I know all too well how busy Ryan is - that's the reason he needs an EA. Ryan gets distracted very easily and just has a TON of energy and doesn't sit still very well. So far I've been very impressed with the dedication of the two EAs that Ryan has... I mentioned something to one of them and the next thing I knew, it had already been addressed and the supplies brought to the classroom!
So, after all that, I'm feeling much better. There's still going to be a lot of work between both kids, but I think we can manage it. That glass is looking a bit fuller now! :)
Tuesday, September 04, 2007
The reason I was worried was because Kurtis was placed in the one class I DIDN'T want him in. He was placed in the 2/3 split (he's in grade 3). There are a number of reasons I didn't want him in this 2/3 split - the primary one's being that I was worried about him not getting adequate coverage of the grade 3 curriculum and being bored by being with grade 2's and "doing" grade 2 work again.
Then when we arrived, things got even worse (according to me):
- Kurtis's class ended up with two teachers - one in the morning and one in the afternoon
- there are only 5 other grade 3's in Kurtis's class
- Ryan has two EA's (educational assistants) - one for the morning and one for the afternoon
Well, after talking to a few parents AND talking to Kurtis, who did enjoy his first day, I have a feeling things will be OK.
The two teachers that Kurtis has are both highly respected and liked. They'll be each teaching different subjects so there's no worry about overlapping there. And, as my sister pointed out, the second teacher will likely have more energy and enthusiasm as she didn't teach in the morning. And since grade 3 is a testing year (for the government), the teachers will have to stick to and teach the curriculum. There are a few other things I am concerned about, but we'll have to keep an eye on those and see how things develop. In any event, Kurtis told me he had a good day, so that's a great sign.
And I'm still not thrilled with Ryan having two EAs. Ryan tests every new person he meets and knows exactly how to do this! So, he really needs consistent discipline and every new person he interacts with decreases that consistency. It also means I have to work with two EA's instead of one - more work for me! I know they are both wonderful EAs - I just wish we had one of them for the whole day! I doubt things will change so we'll just have to work together closely - perhaps setting up monthly meetings to discuss how things are going.
So...my mind is alot lighter now. I'll have to keep working on the glass 1/2 full thing!
Although one of the key purposes of this service is to pray for healing for me, it is not the only purpose. Again, the details are to be worked out, but we will focus on God's leading through our lives, our trust in Him, and joyfully praising our God. Ultimately, it will be a service of hope. We will pray - together and individually, we will sing a few songs, and we will read some Scripture and some poetry or stories.
So, if you are so inclined, feel free to come out to this prayer service. You won't be asked to pray in front of the whole audience, so don't let that scare you off. If you want the details, email me at email@example.com.
Wednesday, August 29, 2007
I am imagining along with them - for both of us. I imagine for my friend Meta as well who is a wonderful, compassionate woman who works with individuals with developmental disabilities.
I imagine...and pray... and trust.
Hallelujah! Hallelujah! Hallelujah!
Imagine there was a young wonderful mother of three [two] who led a good, kingdom furthering life and then cancer hit her, her family and those who love her?
Imagine that her family, friends, and church stormed the doors of heaven with prayers so that somehow this beautiful woman could live to see her kids grow old?
Imagine the much hopeful news about the growth of the cancer, the CT scans, the nuclear medicine tests didn’t reveal good news?
Imagine then after almost all hope was gone, after more than 8  months of sickness, fatigue, frustration and against-the-odds-positive-attitude, after the laws of science and medicine were turned on their head, after the oncologists said that this was the last medical chance for healing, it was revealed that the cancer was gone?
Imagine then that God and Jesus were talking over a cup of tea (surely they wouldn’t drink coffee) about this inspirational servant that they spared only to see that the good work that was begun in this woman would be carried out until completion?
And that, because of the good work that could continue, it would send a ripple of hallelujah’s throughout the land that would resonate with those who really need to hear it?
Imagine? I am.
Tuesday, August 28, 2007
What's not easy is the (little bit of) worry I am experiencing about Ryan entering GRADE ONE! I cannot believe my little guy is already in "real" school. Tom and I debated about holding Ryan back - but after discussion with various people in Ryan's school life (ie. teacher, EA), we decided to put him in grade one. If it is too much, we can always hold him back and have him repeat grade one next year. In any event, he's going! There's so much worry in my head:
- will going to school all day, every day, be too much for him? I wonder if it will tire him out too much. And Ryan's not exactly overly cooperative when he's tired. In fact, the more tired he is, the more active and "busy" he becomes. It's almost as if he feels that if he stops for one minute, he'll fall asleep - so he CAN'T STOP.
- how much curriculum adaptation will we have to do? I know that we will have to do some, but how much and how are we going to do it? We haven't had to do any curriculum adaption yet, so this will be a learning experience for us. In the school system, the IEP (Individual Education Plan) isn't actually finalized until late October (give or take a few weeks), but I want to be "on top" of things starting right in September so I know I'll have to work with the teacher quickly and meet with her early in September.
- how will his new EA interact with him? Ryan has a new EA this year. He has had the same EA for the past two years and we're going to miss her a lot. But I also think it'll be good for Ryan to have a change. But Ryan is very good at challenging someone new - so I'm worried that we will see a lot of negative behaviour in the first few weeks.
- how will his new teacher interact with him? Thankfully, the teacher already knows Ryan as she was Kurtis's grade one teacher. She also has had a student with Down syndrome in her class. So I know that there won't be any major issues like some people encounter. But there's still always some worry in the back of my mind about how they will interact. I am working on writing something up that describes Ryan, his strengths and challenges, how to best work with Ryan, and our ultimate vision for him. This is a LOT of work and I haven't done much on it yet.
This is one of the things about having a child with a disability that I DON'T like. I can honestly say that there aren't too many things that bother me about having a child with a disability. This is one of them. Learning how to manoeuvre within the school "system" is hard work - and a lot of it. It ticks me off that so much of this ends up falling on the parents' shoulders. I know teachers and others in the school system work hard - and for the most part, I have been very happy with the people we've had to work for (no horror stories like some other people have had) and they have been good for Ryan. But it still bugs me that the parents really need to keep on top of it or it can fall by the wayside or not be appropriate for your child or just not done. You really need to learn to advocate for your child. And one thing you learn: not to be shy. You really need to stick up for your child because no one else will. And honestly, I'm lazy. Like everyone else, I'd rather not have to learn the in's and out's of the special education act. I'd rather not have to learn how to adapt curriculum so that it's useful for my child. I'd rather not have to learn how to complete IEPs. Enough about this. And as Tom says, don't worry - it'll all work out OK, it usually does!
Kurtis and Tom did a lot of fishing together. Although they didn't manage to get us a fish'n'chips dinner, they did manage to impress the kids at the cottages!
Connor, Kurtis, Ryan and Sarah show their nice (but very sandy) side.... and then their silly side. I do think the silly side was 95% out on this holiday!
More fishin' pics:
Thursday, August 23, 2007
I started my vitamin C therapy a few weeks ago and just had my 3rd treatment today. I've connected with a naturopathic doctor that I really like and trust. He was a medical doctor in the past so he has a lot of experience and knowledge from that point of view. My blood work showed significant deficiences in many areas. I guess this isn't surprising as I went through 16 months of chemotherapy and it would have worked some damage in that area as well. So I have to take a few supplements to help get myself back to normal. The vitamin C treatments have been fairly uneventful. They hook me up to an i.v. via my port-a-cath (I am sooooo happy I chose to get the port. It makes life re: i.v.'s soooo easy - especially when your veins are as horrible as mine are). Then I read and rest for the next hour and a half or so. The two nurses there are wonderful - they make sure I am comfortable and have everything I need (drinks, blankets, warm bean bags, reading material, etc). So far I'm not feeling anything from the vitamin C - either good or bad. I'll keep you posted!
We had a good week at the cottage last week. I'll be editing this post to include some pictures from our week. I found the week to be a great way to recharge my batteries. I even managed to read the latest Harry Potter book! Too bad we could only stay one week.
That's all for now folks.
Saturday, August 04, 2007
So, in lieu of posts, here are some pictures from the past month:
First of all... my silly boys!
Enjoying the new boat and swimming off the dock:
Visiting friends in Indiana:
Ryan adores dogs of all shapes and sizes. If there is a dog to be found, Ryan is usually not too far off. So, Ryan had a lot of fun with our friends' 3 dogs. This picture is almost enough to make me want to get a dog. ALMOST...but not quite.
Spending the day at African Lion Safari:
At the beach in Grand Bend: