Vote YES on 51
Please, please vote yes on 51. Now I’m not telling you who to vote for Barak or McCain, either way I will still love you the same, but please take the time to read what Amendment 51 is all about. To break it down there is a wait list for people with developmental disabilities; it can take months and many times years to make it to the top of the wait list. Which means when people are waiting on the list they are not receiving any medical coverage or any therapies.
The fact that Noel ended up with a trach and vent was not what we ever thought would happen, but honestly in some ways it was a blessing in disguise. Otherwise she would have had to be on the wait list for at least 18 months, she would have had no medical coverage for that period of time; Scott and I would have had to pay out of pocket more that $3,000 a month for her feeding supplies alone, that is almost twice as much as our mortgage. So that would have meant in that time alone we would have had to pay $54,000 just for her to eat! In all Noel’s medical bills cost more than $80,000 a year and that doesn’t even include doctor’s visits, therapies or hospitalizations. The things is that Noel does receive the funding she needs for her medical costs, but there are thousands who do not because they are waiting. Don’t you agree that the government should help those who through no fault of their own were chosen to lead special lives?
Now to show you the actual cost: a $12 lunch would cost you $12.02; 2 cents could help those with developmental disabilities. If someone asked you to donate 2 cents wouldn’t you? Well that is all that Amendment 51 is asking so please respond with YES!
"Amendment 51 is a small price to provide vital services for children and adults who, thorough no fault of their own, face tremendous burdens every day just getting by.”
For more information please visit:
www.endcoloradowaitlist.org
Tuesday, October 28, 2008
Thursday, October 23, 2008
To my "Sisters"
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Sunday, October 12, 2008
Please Pray
Please pray for dear Emerson, she isn't doing good today. She has another infection and she coded (her heart stopped) today. She is stable now, but she is still not out of the woods. I just ask that you will lift up Eme tonight in your prayers, she is such a fighter and she has come so far, she just started walking on Friday. Also please say prayers for Erika, Eme's mom, I can't even imagine what she is going through right now, so please pray for strength and grace for both of them. We also need to pray for the whole White family in this very hard time.
Friday, October 3, 2008
Home at Last
For those of you wondering, they're home? What about Kids Street, well it turns out that in theory Kid Street was going to be great, but in real life it was just too hard. We had to drive two hours a day, load up all of Noel's equipment every day, and wake up at 5 am and not get home until after 5 at night. It would have been wonderful to take her there if we lived closer, but with the housing market so horrible we realized that we wouldn't be able to move for a long time.
We decided that it would be best for our family if we moved back home for now until the housing market picks back up and we can move.
So we finally made it back home, it was only a nine month trip to Denver! It’s amazing how things have changed from then to now. I feel like I left home with a baby and came back with a toddler. We originally went to Denver for a fundraiser walk for the MDA; we never made it there because the first morning of our trip we were in the E.R. of Children’s. I still remember when the triage nurse went to take Noel from me to weigh her and I had to warn her let me do it because Noel was like a rag doll.
Then she was 14 months old and just barley 16 pounds, she couldn’t sit on her own, she couldn’t bare any weight on her legs, she couldn’t make noise, cry or even talk, we were working on two signs with her: More and all-done, neither of which she knew how to say, she was so complacent with life and now looking back she was barley able to interact with the world around her.
Now she is almost 23 months old, over 22 pounds, she sits all by herself and she even spins around in circles, she can standup all by herself for short intervals, she can talk around her trach, she knows more then 25 signs, and she is so interactive with the world around her.
When we first found out that Noel had MD, I came to terms with the fact that she may never walk and honestly from how weak her muscles were I never thought it would be possible. Now it’s not if she will walk it’s when. I know it was really hard on Noel and all of us when she got RSV but honestly it really was a blessing in disguise, it enabled her to be on a vent (something that her body could have probably used all of her life) which provides her body with the oxygen and ventilation needed to grow, develop and even heal her muscles. I can’t even imagine where Noel would be right now if she never got RSV, she would probably still be barely making it to survive. All I know is that God defiantly has a plan and a purpose in all the things in our lives!
We decided that it would be best for our family if we moved back home for now until the housing market picks back up and we can move.
So we finally made it back home, it was only a nine month trip to Denver! It’s amazing how things have changed from then to now. I feel like I left home with a baby and came back with a toddler. We originally went to Denver for a fundraiser walk for the MDA; we never made it there because the first morning of our trip we were in the E.R. of Children’s. I still remember when the triage nurse went to take Noel from me to weigh her and I had to warn her let me do it because Noel was like a rag doll.
Then she was 14 months old and just barley 16 pounds, she couldn’t sit on her own, she couldn’t bare any weight on her legs, she couldn’t make noise, cry or even talk, we were working on two signs with her: More and all-done, neither of which she knew how to say, she was so complacent with life and now looking back she was barley able to interact with the world around her.
Now she is almost 23 months old, over 22 pounds, she sits all by herself and she even spins around in circles, she can standup all by herself for short intervals, she can talk around her trach, she knows more then 25 signs, and she is so interactive with the world around her.
When we first found out that Noel had MD, I came to terms with the fact that she may never walk and honestly from how weak her muscles were I never thought it would be possible. Now it’s not if she will walk it’s when. I know it was really hard on Noel and all of us when she got RSV but honestly it really was a blessing in disguise, it enabled her to be on a vent (something that her body could have probably used all of her life) which provides her body with the oxygen and ventilation needed to grow, develop and even heal her muscles. I can’t even imagine where Noel would be right now if she never got RSV, she would probably still be barely making it to survive. All I know is that God defiantly has a plan and a purpose in all the things in our lives!
Here are some pictures of Noel from our recent trip to the Zoo!
Above: Noel is looking at the Monkeys
Above: "Wow Mom that Monkey is really Big!"
Above: Noel and "Aunt" Kat saying Cheese!
Above: Mommy and Daughter enjoying the day!
Here are some other pictures of our recent trach picnic:
The Trach Family (unfortunately we are missing some members!)
Noel and Marissa sailing away at the Children's Museum
Milo and Noel, she's in awe that he has a trach too!
Friday, September 5, 2008
On the Road Again
Well Noel is traveling again... not alone of I'm with her of course. This time we have traveled almost 650 miles to Kansas City, unfortunately we have come for a funeral. My cousin Matthew, who was a year younger than me, lost his life early last Sunday morning in St. Louis, MO. He left behind a wife and a beautiful daughter who is only six months old. So we came to be with our family in this very hard time. (I have to say as far as traveling with a trach vented baby I might be becoming quite the expert.) I would truly appreciate if you would keep my family in your thoughts and prayers this weekend.
Thursday, August 28, 2008
Kids Street
So Noel is scheduled to start Kids Street (a special needs day care) in a few days, up till now I have been really excited. I’ve been thinking of all the great things she’ll be able to do, she will get to socialize, get therapy and have experiences that don’t just include me. Well last night I could barely sleep because I was overcome with such a feeling of worry. What if she gets sick, what if the nurses don’t suction her and she plugs off, what if she is crying and she get’s ignored because no one can hear her? I suppose that some of the worry is the same any mother would feel, but for me it’s hard to let someone else be responsible for Noel. Since the day she was born I have been her primary care giver, sure there have been times when I left her with people I really trusted, but that’s only been four people in her whole life (thanks Alissa and Heather!). I hope these are just jitters and not my motherly intuition telling me that this isn’t where she should go. I was thinking we just have to take it one step at time, if it doesn’t work for us we can always try something else.
Tuesday, August 12, 2008
It's amazing the feeling that comes with being understood. We had a picnic on Sunday with some amazing families who's children also have trachs. I felt so normal for those three hours, I didn't have to explain anything to anyone I was just understood. All the kids had lunch together, tubes and formula was on the menu. I was even able to share my homemade formula recipe with the other moms, something that is usually useless in any other conversation. This was my first experience of a support group and now I understand why they are so important:
1. Sometimes it seems like not even doctors, the ones who are suppose to know everything, don't truly understand what you go through or what you're trying to tell them, but when you get around other people who live what you live day in and day out they can't help but understand you.
2. I think it helps to ground all of us and help us reflect on the journey we walk everyday. I looked around at all the other families there with so much respect and I feel honored to be a part of such a unique group of people. I also feel so blessed to be able to meet all these incredible children, they truly are special and you can't help but notice when you get to be around their sweet spirits!
1. Sometimes it seems like not even doctors, the ones who are suppose to know everything, don't truly understand what you go through or what you're trying to tell them, but when you get around other people who live what you live day in and day out they can't help but understand you.
2. I think it helps to ground all of us and help us reflect on the journey we walk everyday. I looked around at all the other families there with so much respect and I feel honored to be a part of such a unique group of people. I also feel so blessed to be able to meet all these incredible children, they truly are special and you can't help but notice when you get to be around their sweet spirits!
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Steps for Noel
My feet were burning, the sweat started to drip into my eyes and my throat was as dry as a desert; but I didn’t even care. No pain or discom...
