We left Shriners Hospital for Children yesterday doing a little bit of a jump for joy – Phoenix’s scoliosis has decreased – yeah, DECREASED. Significantly. Un-real. When the Spinal Doctor told me this I thought, “Well of course. This makes sense. She’s become a little pro running and dancing in her walker – she’s built up some core strength and with this strength come’s a greater ability to hold herself up.” But even though it made sense to me, I wasn’t expecting this news. Not at all.
All three of us were very excited when the doctor told us the results of the x-rays. A buzz filled the room. Even Phoenix knew what he was talking about – she pays close attention, like her big brother Isis does. And Isis’ spine was only two degrees different from twelve months ago – nice, very nice. I LOVE going to the doctors and getting GOOD NEWS!! (Because it very rarely, if ever happens.)
Chuck a party!
On this day of turkeys I am compelled to confess what I am thankful for most days of my life:
1. I am thankful for two children who are living and loving and able to genuinely smile.
2. I am grateful they have the best possible dad (and mum hee hee) in the world.
3. I am grateful for old, long lost friends.
4. I am grateful to have one hundred kagillion zillion paintbrushes to create whatever I like whenever I like.
5. I am grateful for inspiring people.
6. I am grateful for Obama.
7. I am grateful that my father taught me to have integrity.
8. I am grateful for beautiful music.
9. I am grateful for honesty.
10. I am grateful for a family that laughs at me and thinks I’m hilarious (at least that is my interpretation of their laughter)
11. I am grateful that my son is able to laugh at himself when people accidently think he’s a girl lately with that long hair of his hahaha (four times in the last two days)
Hi everyone! This is the last call for recipe donations for the Cure Congenital Muscular Dystrophy Recipe Book Fundraiser! Thank you to so many who have donated recipes thus far. Mwah! Mwah! Big kisses to you all!
I have dozens of delicious, mouth watering recipes care of you – thank you. Before I type up the last of them, I wanted to put one more shout out for any family specialties or favorites that you would like to share for a good cause.
Many thanks from me and my children who will directly benefit from continued Muscular Dystrophy research.
xox
(Email recipes to jasmine@glooart.com or post them here on this blog.)
With a house full of sickies the last two weeks, my nursing hat has primarily been on. But strangely, I’ve also been able to write more than 30,000 words for my Nanowrimo November Writing Challenge – Woot! Woot! This is more words than I have ever put together for a story in the past (by a few thousand words) and I’m more than half way to novel status! Woohoo! And, I must add, I am loving it. I am loving the whole process of creating lives and loves and heartaches and triumph over adversity.
And then I woke up to this yesterday morning, so I had to run out camera in hand, blinking the sleep out of my eyes to catch this memory of our backyard in Logan Utah:
I’ve also been able to whip out some new paints I’ve been dying to try out since they arrived by UPS last week. They’re called Claudine Hellmuth Studio Paints and I am loving them so far! I still love the consistency of my Jo Sonja Gauche paints for fine detail, but these Studio acrylics are very fantastic, I must confess. They are definitely my favorite acrylic paints to date. Last night I doodled around with some ideas for online e-cards and print cards for Shriners Hospital for Children. It was fun to have a paint brush in my hand again :) It’s been a little while.
So Halloween was pretty fun, for everyone except for poor little sick Isis that is. His father had worked for over a month on his AMAZING Warhammer Costume, but Isis was too sick to go :( Me? Oh, I’m the behind-the-scenes-person these days – makeup artist and photographer, you know the drill. There’s not enough time in the world to get me ready as well as everyone else – I just take way too long to get made-up to a standard that my perfectionist personality would be satisfied with :)
Phoenix was Mulan Princess Ballerina (in case you couldn’t tell). Phoenix and I got free tickets to the Utah Ballet and everyone loved how she looked like a princess at the performance. Later that night we went and visited Auntie Candice since we were half way to her house being at the opera. We went to a Halloween dance in a big barn with her. Phoenix made more friends than anyone else there combined (seriously), dancing around so happily in her walker, absolutely loving life. (”Mummy, we did SO much FUN today!”)
They love their daddy, the funnest daddy in the world with the coolest real-life mustache with curly edges for Halloween.
And look, even though Halloweens all about the candy and playing dress ups these days (as opposed to it’s more darker historical roots), some inspiration for our lives can be found through the gluttonous consumption of said candy:
Recently, a beautiful French woman by the name of Pati (you’ve got to check out her amazingblog) approached me with a desire to help our financial situation due to high cost of healthcare in America. Having two children with Muscular Dystrophy means they need to access that healthcare system on a daily basis. She wanted to offer her artistic talents to help raise funds for our frighteningly large medical bills. Her offer literally brought tears to my eyes – she completely blew me away. I was so touched by her kindness and generosity. Since I have spend a good part of the last twelve+ months finding ways to take care of these huge bills in a way that wouldn’t involve bankruptsy, I felt that we were actually in an ok place right now regarding those bills (sortof) and that the place where additional funding could most benefit our children at this point was The Muscular Dystrophy Association of Western Australia. The NeuroSciences lab there is at the forefront of cutting edge research in muscular dystrophy. Even though the clinical trials happening there right now are for the more common Duchenne’s Muscular Dystrophy, I believe the science behind the trials (exon skipping) the most likely to have an impact on our children at some point down the road.
Look how amazing she is! Pati put together two digital scrap kits: The Love Kit and Merry Christmas Kit just for us. She is amazing. You can download these for free with the hope that you may give a donation – large or small – to the Muscular Dystrophy Association of WA in return. Many thanks to Pati and many thanks to you for supporting a cause so precious to me.
We, the people, sent you to Washington DC to speak for us and to help make our lives better, not to drag your feet in endless healthcare debate. We are counting on you to saves our lives, now. Congress, DO-YOUR-JOBS. Insurance Giants, BUTT-OUT – quit your dirty bullying and the spreading of misinformation (otherwise known as ‘propaganda’, yes that’s right America, you thought only ‘the bad guy’ countries did that didn’t you, but we are victims of it here in the US too…)
A special thanks to this congressman who is doing his job: Representative Alan Grayson from Florida who, after reading the latest adult mortality studies released two weeks ago said, “how can I make this better.” And then the amazing part – he actually set out to do just that. This guy has a backbone the likes of which has not been seen in Washington for years. YOU-FRIKKIN-ROCK Mr Grayson. You frikkin rock… My tears fell as I heard you speak with truth and a commitment for change, sharing the stories from the dead.
Please, write to your congressmen today and ask them to support real healthcare reform, now. The new figures from a Harvard study published two weeks ago show that 44,000 Americans die needlessly each year because of lack of access healthcare (many of those have insurance, as many of you know, insurance doesn’t really work when you get seriously ill because it’s all about maximizing profit thereby minimizing help). This figure is up from 18,000 the last time I researched the topic a year ago. Having been almost completely destroyed emotionally and financially by the seriously flawed excuse for a health’care’ system here in the US, change can not come fast enough for me.
I needed change yesterday; last month; a year ago.
And I have to say that I haven’t felt like my local congressmen have been listening to me and learning from my real-life experiences of having two sick children and living in this once great nation. In fact, I know they haven’t been listening because the form letter response I got from one of them was on a completely different topic than what I wrote him – didn’t exactly instill confidence.
I really hate to say this but America is not as great as it used to be – it’s broken and in my view, so much of it’s mess can be directly related to bad, bad, expensive, non-accessible, highest-reason-for-bankrupsty health’care’. It is an absolute mess here, economically, politically, in many ways culturally and definitely socially.
I need my congressmen to listen to my experiences dealing with the highly inflated cost of medical care, how it destroys families who are already destroyed from having illness in the home and how insurance companies have grown completely unaffordable to most middle-Americans – you know the ones who haven’t had a raise since the 90’s because of how much health insurance is ripping off their employers – and have fine print to get them out of almost anything. The only people that seem okay with the status quo are government employees with health insurance paid for through middle class taxes, people lucky enough to work for huge corporations who can negotiate cheaper insurance because of their size and people who havn’t been screwed over by a system designed to bring the most powerful country in the world to it’s knees – yet. Haven’t been screwed over yet. They are either healthy or have only had relatively short illnesses. And yes, The United States of America is on it’s knees, a country cripped and broken.
How dare a diabetic with a life-long daily illness have to pay $600 a month for the medicines to keep him alive and then have to ask the pharmacist which one is the most important and skip the rest.
Is America too arrogant to look to the rest of the world for ideas on how to make this better? Is American too consumed by greed and the culture-of-suing to not see how it is breaking this country?
Suing a doctor for not being God – I mean, how dare your doctor be human - oh, you have a bill that is going to bankrupt you after a delivery that turned complicated ending with a two week stay in hospital? Well, that changes things completely. Okay then, I guess you have no choice but to sue otherwise you will end up on the streets with no home and even less access to healthcare for your sick child; self; parent; sibling; loved-one.
Can you see how the current system encourages the suing culture?
A Canadian lawyer said it beautifully on my friend Loralee’s blog – “…as a lawyer who has defended physicians in medical malpractice suits north of the border… With a single payer system as in Canada, if I break my leg when I slip on your sidewalk (which may be due to the icy sidewalk, or to the fact I wasn’t paying attention), I go to the hospital and my leg is taken care of without any cost out of pocket. I could sue you and we could fight about whose fault it is for years, but unless I have lost any income, I probably won’t. Similarly, if I have an infant who needs substantial medical care, in the US I may have no choice but to sue my OB/GYN for any number of things: issues with the delivery, failure to diagnose before birth, even potentially the failure to advise me so I would have the opportunity to abort the fetus or not get pregnant in the first place. When people have significant medical costs they often have no choice but to turn to litigation. With “socialized” medical care, the costs of caring for that child are covered, thus turning to litigation becomes less of a necessity.”
Many doctors have to pay $100,000+ each year for malpractice insurance. How do they pay for that do you think?
It most certainly is the most vicious of cycles.
Do you know how encouraging it is to see a congressman stand up strongly for serious healthcare reform NOW and not back down from Insurance Company bullying tactics and Republican backlash? Please ooz some of this vibe onto my Utah congressmen… please…
Life was all dandy. The sun was shining, the bees were humming, the apples were falling. The children discovered how they could have mustaches like daddy by folding leaves in half.
Leaves were dropping all at once like that funny cartoon on youtube and it was so nice to be outside enjoying the last of the warm days. The sun was so relaxing and warm that soon, the children were napping in their soft bed of golden leaves.
And then the next day the virus clenched it’s awful fist and said, “Your son shall me miiiiine. Mwa ah ah ahhh.” And so the virus took him and our house converted into a hospital and I converted into a doctor and a nurse. My son became bed-ridden with a breathing machine to help him breath and a coughing machine to help him cough. The virus thinks he can beat us, but I know better. We are going to kick that virus’ butt and in fact, five days on, it looks like we’re definitely going to win.
Yay! Obama, Obama, he’s our man, if he can’t do it… well… that ’s too depressing to think about.
I can’t be happier hearing the most important politician in America talking this way. He is pretty much giving the bird to powerful insurance companies trying to kill reform at any cost. I feel like jumping up and down with pom poms cheering him on towards the finish line of real health care reform in America.
I have been asked to help collect delicious recipes for a massive Cure Congenital Muscular Dystrophy fundraiser. They are putting together a classy recipe book and need mouth-watering recipe donations. Can you guys email me or post your favourite recipe(s)? I know that some people have ’secret’ recipes, but think about sharing those too for a really good cause (except for you Kelly, I still think you should be packaging and selling your brownies world-wide – you would dominate the world brownie market. Keep that recipe a secret for sure ;)
But for the rest of you, please share!
I will be sharing my Fudgy Yummy Carrot Brownie Cupcake Recipe and my mum’s Caramel Slice Recipe. Oh, and her Carrot Cake TO DIE FOR Recipe. Oh and DEFINITELY Cyndee Hamilton’s Lasagna from my days working at the Perth Mission Home… How about you guys? Anything delicious come to mind? I would love to see recipes flooding in from my friends all around the world. What a diverse bunch of deliciousness that would be!!
The Cure CMD team is working so hard to get more funding into research and raised awareness for the plethora of Muscular Dystrophies that fall under the congenital (from birth) umbrella. Isis and Phoenix fall under this umbrella and I was approached by the foundation after they stumbled across my blogs last year. Many of the people behind the scenes of the CCMD foundation are parents of children with CMD themselves and are, in my view, supermen and women. As many of you know, having a sick child and living in America is a financial nightmare on top of the heartbreak of having a sick loved one. I tip my hat to these amazing people who find the time and emotional strength to do so much more than look after their precious children.
So will you guys email me something delicious to pass on? Let me know if you don’t want your name on the recipe.
Thank you!!
Love Jaz xox
PS Have a look around their beautiful site. To make a donation, click the donate button below or visit the Cure Congenital Muscular Dystrophy site. Every dollar counts, whether large or small. Much love and appreciation xox
Credit Card / PayPal
To donate to CureCMD via credit card or PayPal account, please click below. Note that if you wish to pay via credit card, please follow the “continue” link to the left of the Paypal login box on the next screen. The blue “continue” link is under the heading “Don’t have a PayPal account?” On the paypal screen after entering your credit card information, there is an additional line on which to add a Donor Message if you would like to make your donation in an individual’s name. To set up recurrent donations, contact pat.may@curecmd.com
Since moving back to the US, we have had to make difficult decisions based on the cost-of-care, that has compromised both the short-term and long-term health of our two children. Due to the inflated health insurance premiums we were paying – premiums that provided less than 5% of their daily healthcare needs – coupled with the providers expensive deductibles, co-pays and ‘out of pocket’ fees, major stress and worry for our future compounded the worry already felt in a home that has two children with a rare disorder. The compromises we have had to make in the last year may have saved money initially, but ultimately, cost more down the road. For example: My three-year-old daughter was eligible for the RSV shots last winter because of the high risk of respiratory failure the virus posed to her. Unfortunately, we had to literally turn the deliveryman away at the door upon discovering the cost was $3,300 for three shots. Her deductable was almost as high, so even with insurance and having the shots ‘approved’, we would have had to pay the full amount ourselves. My stomach churned at the thought of having to turn the shots down, as my son almost died of RSV when he was three. Several weeks later, she was admitted to intensive care with Respiratory Failure and was ventilated for two and a half weeks. The cost was almost her life, and a $100,000 hospital bill.
Our Previous Medical Care Issues:
There is no roadmap for the family or physicians where rare illnesses are concerned.
We very quickly became the doctor and nurse to our children. We learned to fight for the care they need and suggest possible treatments because the doctors just don’t know what to do and what to expect. As young, new parents, our days saw us writing the book on RSMD. Figuring the disease out, alone, the hard way. Imagine the worry of seeing a beautiful baby waste away without a clue as to why; Seeing his file put in the too-hard-basket; Living in a dark cloud of fear and worry because there are no answers why and no clue what was to come.
Multiple hospitalisations, traumatic resuscitations and ventilations – our lives became something we could never have imagined. These beautiful children, with amazing talents and personalities, typical in every possible way other than their bodies refusal to work properly.
It took five years to find a diagnosis and even then, there were no research papers, doctors or specialists that could tell us that our children will most likely die before their prime, or will develop crippling scoliosis as they grow needing multiple spinal surgeries before they even hit their teens. There are no roadmaps for us or for our doctors. We have had to write it, map it out, from hard, sometimes near-death experience; through trial and error. And more recently, through meeting a family who had all four children with the same disease. I understand that this is the way of rare diseases. But it is very difficult to live through.
My Hopes For The Future
I used to wonder if my children would be able to marry, have children, lead relatively normal lives as adults. Even the doctor who knew most about this disease in the world couldn’t answer these questions for me. I know now. I know that they may not live long enough, or have the independence, or the strength. They will hope for it and wish for it though, just like we all do.
I don’t think about this anymore. Now my thoughts are consumed with how on earth we are going to pay the next hospital bill. I fret over how we are supposed to pay for their tube-feed supplies when it costs more per day to feed them than the average middle class salary earns.
I wish I didn’t have to think about this side of things, but it is the reality for us at the moment. I would like to be thinking about loving them, caring for them, keeping them as healthy and as strong as possible. I resent the amount of time trying to get them the healthcare they need has been taking me away from them. I wish for less worry in life, for continued research about this disease and the gene affected and I wish to see them grow up happy and content in their own skins.
A couple of months ago, my widdle guy Isis saw some people making magical cakes in the shapes and colors of all sorts of amazing things on TV – this rocked his world. He thought it was as cool as Transformers and superheroes – it was right up there with the coolest things in his little world. He was watching Reading Rainbow on PBS kids hosted by Jordy from Star Trek :) (We love that show!) When he saw these cake creations, his eyes lit up and he said excitedly, “I want to do that!!!!” Now, given that he is tube fed and has very little appetite due to his Muscular Dystrophy (and generally loathes food), I was more than stoked to hear this! Anytime either of the children exclaim excitement towards food of any kind, I get so excited! There is nothing quite so cute to me as the sight of their cute widdle mouths chomping up and down on something – a sight so rarely seen in our house, but taken for granted by just about every other parent on the planet earth. It brings a tear to my eye each rare time they eat something willingly, and more than just one painful, bribery-induced bite.
So naturally, I made it my life’s mission to book us into the next available cake decorating class at Michaels Arts and Crafts! And here we are, week two, and loving it! He loved it so much that he spent fifteen minutes after our first class eating more cake than he has in his whole life COMBINED! (Is that worth the Transformer Mellenium Falcon mum?) (This is an awesome toy that mum has been saving to give to Isis when he eats a whole slice of pizza, but I am thinking he may have finally earned it :)
In the hectic busyness of life, I realized recently that I have not been spending enough one on one time with Isis and it has been subtly effecting our relationship. Us humans need friendships in our lives and the feeling of being able to open up to someone when needed. I had noticed that Isis had been confiding less in me, to a certain extent, because of my busyness. After all, it is difficult talking to someone who is racing around constantly, thinking of all the things that need to get done. (Time to slow down and relax Jasmine.) As a result, it is really, really enjoyable sharing this cake decorating class with him, my widdle guy xox
I can’t stop crying. This was the absolute last thing I was expecting from a politician in a position of power when I watched the President’s press conference from yesterday. I reluctantly clicked the link, expecting the typical transparent excuses so often heard from the lips of politicians regarding real healthcare reform in America. I have written letters to every congressman in the state of Utah and also to the President and had grown so discouraged by standard political response, I had to stop talking about healthcare change. It was too painful to see and hear ignorance all around me. It filled me with complete hopelessness feeling like I was one of the only ones who could see what was really happening with US healthcare. I felt thoroughly discouraged. I had to stop sharing the struggle that we face on a daily basis having sick children and living in America. It is too real of a topic to us and until congress had walked in my shoes, I felt there would never be change.
As I sat on the couch this afternoon, looking out the window and wondering how on earth we were going to make it here in the US with already more than $100,000 in medical debt [and having just received a facebook email from someone vehemently against 'becoming communist' (eyeball roll)], I noticed a message from Obama linked to his press conference of yesterday. After 15 seconds I began balling and continued for the other 54 minutes. And I almost didn’t watch it. I was sure there would be no good news for us in there….. oh how I was wrong. Thank you Mr. Obama. Thank you for reading the letters we send you and for actually listening. Thank you for being open minded enough to review the facts, not the fears. Thank you for rising above the ‘Ignorant American’ stereotype. Thank you for being smart enough to distinguish HMO propaganda from reality and for not buying into the Republican back lash. Thank you for putting us ahead of your career – something very rare in politics despite it being the job description. Thank you for lifting some of my despair. Thank you…. for standing up for those of us who are too sick and too tired to have a strong voice. Thank you thank you thank you thank you thank you… xox
I can’t stop crying. This was the absolute last thing I was expecting from a politician in a position of power when I watched the President’s press conference from yesterday. I reluctantly clicked the link, expecting the typical transparent excuses so often heard from the lips of politicians regarding real healthcare reform in America. I have written letters to every congressman in the state of Utah and also to the President and had grown so discouraged by standard political response, I had to stop talking about healthcare change. It was too painful to see and hear ignorance all around me. It filled me with complete hopelessness feeling like I was one of the only ones who could see what was really happening with US healthcare. I felt thoroughly discouraged. I had to stop sharing the struggle that we face on a daily basis having sick children and living in America. It is too real of a topic to us and until congress had walked in my shoes, I felt there would never be change. 
