Wow. I feel blessed. Since we have started the fundraiser one week ago, we have raised over $900. We have had friends donate their time and photographs for our son. We have had friends donate financially. Some of the donations have been hundreds of dollars. That’s a lot of raffle tickets!
These generous donations are from people who probably don’t know a thing about HBOT or ABM. They may have heard of hippotherapy or at least theraputic riding. These donations are from friends that don’t even need to know about these therapies because they know us. They love our family and want the best for our son, just as we do. If you are a parent of a child with CP you will know a lot about these therapies and the dozen or so other alternative therapies out there (there are a lot). Because as a parent of a child with CP you do as much as you can to find out ways to help your child. As a parent in general you would know that you want the best for your child, whether he has special needs or not.
We are also not the first to come up with creative ways to help raise money for our child’s CP. One mom over at Better Than Normal makes party hats, crowns and now super hero capes to raise money for her son’s alternative therapies. I would love to create things too, but being in Egypt makes that difficult since I can’t guarantee items will make it through customs! (My mom only received one of her two scarves which I sent her.)
Being in Egypt we are very lucky that we have services for Sebastian. Very lucky considering there are only FOUR occupational therapists in the ENTIRE country. And just as we are thankful we have access to physical and occupational therapy, we feel that is not enough. We feel that there is more that we can do because of the research I have undertaken since coming to terms with Sebastian’s CP.
We are lucky that we have insurance that helps cover the costs of some of these traditional therapies. For some of the therapy Sebastian has received here, we have had to pay out of pocket and risk not being reimbursed. But that’s ok. Because this is what we do; we take care of our son. Our insurance does not cover the cost of any adaptive equipment. So when/if the time comes for Sebastian to need a gait trainer or a walker or even a special tricycle, we will have to find a way to pay for these things too. Our hope is that the therapies we choose will help him do things. But as every child with CP is different, so is the outcome of every patient in each therapy.
Cerebral Palsy is the most expensive disability to treat over a life time. If I can organize a fundraiser to help Sebastian get therapies NOW that can possibly help him sit up on his own, play with toys independently, self-feed, talk, crawl and even begin to take aided steps, then bring it on. I will tell everyone I know and everyone I don’t know to buy a raffle ticket. Going without a drink at the pub or a desert at a cafe can purchase one ticket (ok, going without two drinks or two deserts). And everyone doesn’t even need to feel pressured to contribute financially. Just spreading the news helps too. I have a friend I haven’t seen in over twelve years who has volunteered to work with her church community to help support us.
Thank you to each of you who have already donated your time, support, photos, and purchasing of raffle tickets. We appreciate it more than you can know.
I’ll leave you with this photo taken on his first birthday, nearly two months ago. The outfit is from my Uncle Brian, Aunt Kathy and their kids.
Today has been a long, tough day. Not even just for the day that it is on the calendar; 13 years since Josh drowned. This photo was taken a couple weeks before that tragedy at a friends. It’s the most recent one we have of him. It makes me think of all the crunches he bragged about doing every morning and night to get his ‘rock hard abs’. Teenagers.
It’s a week of remembering for me. Yesterday was also the 6 year anniversary of Adam’s tragic death. Some of you know he was one of my closest friends whom I taught with in Bangkok. He made me laugh a lot. Just about every memory I have with him involved laughing and having a good time with life.
I remember the moment I learned about each death. I remember entering a stage of shock when Josh died but somehow still trying to hold the family together. I remember collapsing on the ground and curling into a ball on the floor, tears streaming down my cheeks, when I got the phone call about Adam.
I remember the phone calls I made beforehand to friends to ask for prayers that my brother would make it. I remember the phone calls I had to make to friends to tell them of Adam’s death.
I remember gathering photos for Josh’s photo board for his wake. Growing up over the years. Posing. Laughing. Playing. I remember watching the slide show during Adam’s memorial at school. Laughter. Memories. I saw my smile next to his on many of the slides.
I remember not painting anymore after Josh died, not for a long time. But I remember painting again in Bangkok. I remember Adam encouraging me to paint, just as Josh had always kept our younger brother, Jake, occupied so I could paint.
I remember talking to Adam about Josh and the loss that I had to accept when he died. I remember them both. I remember these moments so vividly as I think back on them. And I remember the loss of them from this world, but most of all, I remember their LIVES. And our lives together.
Check Sebastian Can Do for two more photographers and their photos. I also have four more photographers photos to upload and post so keep checking back for photos from places such as China, Peru, India, SEAsia, Sudan, Kenya, Palestine, Egypt, U.S., Australia…
A sneak peek at one of the photos from our first photographer, Jessica Bibbee.
Please pass on the word about our fundraiser. Post a link on your blog. Tell a friend over coffee. There are some amazing photo prizes to come, even a couple art pieces, and it’s for Sebastian! Thanks so much.
I am organizing a Photography raffle to raise money for Sebastian’s therapies.
Each ticket costs $10 (and a special deal with two at $15). Photographer friends of mine will be donating a few of their photos for the raffle. These prints will be framed and shipped to the winners all over the world. I will approach local businesses in MI for deals on printing and framing in exchange for advertising, etc. There will be ten prizes and the winners will choose from 15 prints. I will hold the raffle for one month. Winners will be announced online on July 31st. Each winner will be contacted via email.
I have set up a PayPal account for the raffle tickets/donations with a button located in the side bar on both of my blogs. Soon I will post an address in the States (my mom’s in Michigan) for checks or money orders if others wish to do it that way. Once you make a donation, I will email you your raffle ticket number. I will also be keeping track of the numbers so if yours gets lost in the many emails that fill your inbox, rest assured I will have your number on file!
Sebastian Can Do will include detailed information on the therapies we plan to have for Sebastian as well as photos and stories of him and his development throughout the two months he is receiving these therapies so you can see how your donations impact Sebastian. I will also post information about each photographer and the prints they are donating for the fundraiser. My goal is to introduce one photographer a day; however, that is dependent on the speed of receiving their donations. I will post pictures of the prizes and places you can see more of their work! I’m also hoping for a couple of artists to donate their prints.
Please check back regularly as I will add photos periodically which could end up hanging nicely on your wall at home. I will also let you know when all of the prizes have been posted.
Sebastian and I will be heading back to Michigan for two months at the end of July. While we have planned the trip to spend time with family and friends, we are also using it as an opportunity for him to do some alternative therapies not available in Egypt. Alternative meaning, therapies aside from the traditional occupational and physical therapy that he currently gets. I have been researching therapies since his diagnosis. I am a member of a yahoo group called CPmoms and I also keep in touch with some other mom bloggers who have boys with a similar kind of CP as Sebastian. Through all of this I have learned a lot. The biggest thing I have learned is that many alternative therapies can and do help.
The therapies we are hoping to do this summer: Hyperbaric Oxygen Therapy (HBOT) to treat the brain injury, Anat Baniel Method as an alternative to regular physical therapy, and Hippotherapy: riding a horse with aid of occupational/physical therapist to build trunk support. We had also looked into Conductive Education, but our schedules don’t match up this time around.
Unfortunately, these therapies cost a lot of money. Since we live on Ali’s modest trainee income, and I’m still paying college debt, we don’t have much additional funding for alternative therapies. Right now we pay out of pocket for his therapy in Cairo and 90% gets reimbursed only up to a certain amount.
Just to give you and idea, the HBOT therapy is $140 per session, initial requirement is 40 dives (that’s what they are called), which brings us to $5600. The Anat Baniel Method could be similar per session but Sebastian could do one a week, I am still connecting with practitioners in the area to find the cost and availability. I don’t know if Sebastian is old enough for Hippotherapy, but those sessions are around $70 per session. We need to do physical therapy in conjunction with the HBOT, so I am researching ones in the area which our insurance will cover. [This doesn't include our flights for $1000 to MI, thankfully already paid for.]
In order to make sure Sebastian has access to the best therapy available, I am planning a fundraiser to help raise funds to pay for Sebastian’s therapy while we are in Michigan.
Details on fundraiser to follow.
This post has been cross posted with a new blog I have started: Sebastian Can Do. This blog will highlight the types of therapies we are planning to do as well as follow the treatment over the course of the two months we are in MI. It is being set up for the fundraiser so all information about the fundraiser will be posted here. There will be a Paypal Donation button on both blogs.
Sebastian and I made a picture for Ali for Father’s Day last weekend. [Sebastian grabbed onto the marker and held tight. He was more interested in getting it to his mouth that using it to scribble on the paper. So I held his hand with the marker standing and he moved it around. ] It was Father’s Day in America and since Sebastian and I will be in Michigan during the Australian Father’s Day, we decided to celebrate early. Ali was on the late shift which meant he wouldn’t be home before Sebastian went to bed, but he would be able to sleep in a little and enjoy breakfast with us, which was mighty nice.
Since Ali’s new bureau chief has arrived we haven’t seen much of him during the week and even some weekends he is called into work unplanned. Ah, the life of a journalist. During the week he gets home late most nights and Sebastian is already asleep; which can be any time between 7-9pm, depending on his afternoon nap. It doesn’t matter if Ali goes into work early or late, if there is news to be written, he’s writing it. I’m used to it now, but I still wish he could come home earlier. I know that a lot of dads work late, but sometimes it seems tougher since we are on our own here. At least in my mind.
Since he is working so much sometimes he struggles to balance everything. I do my best to help him out, but sometimes he forgets things, and I’m not always able to remind him. Sometimes even after he’s come home, he’s still working. Being a journalist is not a 9-5 job and that’s one of the reason’s he likes it so much. But he also likes to spend time with his family.
We have a trip to the beach planned in a few weeks time. Unfortunately a few days were eaten up by the need for him to cover a conference, but luckily for us it’s in Sharm so we can tag along and go from there on our mini-holiday. We wanted to have some quality time as a family before heading to Michigan. Sebastian and I will be there for two whole months. We will skip out on the extreme heat of a Cairo summer (it’s well over 100F today) and even miss Ramadan. Sebastian’s therapy center will be closed for August so we decided to take this opportunity to spend time with family and friends in Michigan AND dive into some alternative therapies. More on that to come.
As for now, I heard a rumor my husband was going to be home early today (maybe home by 6pm?), so I’d better go. Sebastian had a bit of trouble napping today and has fallen asleep late this afternoon and I need to get into the kitchen and make some food for him as well as our dinner.
…from Sebastian…inspired by Anthony Browne’s book My Dad.
My Dad, he’s alright. He can work a long day and still come home and help me fall asleep. Sometimes I’m already asleep and he sneaks in to look at me. I know he wants to pick me up for a cuddle. But he waits til morning so I can keep sleeping.
My dad always makes me laugh. He likes to pretend there is something on my shirt and when I look down he gets my nose. It makes him laugh too. He also makes funny noises. I really like it when he sneezes.
My dad is really strong. I love riding on his shoulders. I can almost touch the ceiling! But instead I like to hold on tight to his hair and sometimes I even try to chew it.
My dad always makes me do ‘tummy time’. I don’t like it but I know how much he loves me because it’s really important for me to do it. And every time I get stronger so I can be strong like him when I grow up.
My dad loves music. Sometimes he sings really silly songs and I don’t know what the words mean but my mama asks him to sing something else. He is so cool, my dad. He also likes to dance with me and I laugh a lot when we dance.
My dad is a good teacher. He tells me about the world and sometimes I don’t understand what he’s talking about but I know it’s important and I’m glad he’s telling me.
My dad gives great baths. Bath time is one of my favorite times of the day and my dad always sings songs to me and we splash the water all over the bathroom. He also likes to squirt water in my face. I like that too. It reminds me of swimming under water.
My dad combs my hair after my bath. He always makes it look really cool. Sometimes he spikes it up like a punk rocker and sometimes he combs it back like a greaser. I like looking in the mirror when he combs my hair.
My dad always reads books to me before bedtime. One of our favorites is Hop on Pop. I like the funny words and bright pictures. But mostly I love how my dad reads it to me. He makes me smile.
My dad rubs my back when my tummy hurts. It helps me burp and then my tummy feels better.
My dad plays with my toys with me. His favorite is the xylophone I got for my first birthday. We both like to hit the keys but he plays songs. Someday I hope I can play songs like he can.
I’m so glad he’s my dad. He loves me so much and you know what, I love him too. I always will.
Thanks Dad for being the best dad ever.
Love, Sebastian
This week I was sifting through hundreds of emails in my inbox (dating back to Christmas) and so I’ve been a bit behind in blogging this week. Only now catching up on my favorite blogs, I was pleasantly surprised to be tagged by one of my favorite blogging moms, Bron.
“It’s really simple. I love how every photo tells a story. Some short stories, some long tales. I want to know what is your favourite photo of yourself. Everyone has one. The photo they look at and smile. It reminds them of something, some time, some place. A moment in time. So share the photo, share the story and then tag three other people. I want to see photos and stories all around the blogosphere.“
So I started the task of looking through photos to choose my favorite one of myself. Myself! Can you believe it? Have I had a photo taken of me without my son in my arms since he was born? I don’t know. He is such a huge part of who I am now. Mid-post he roused from slumber although he hadn’t even been asleep an hour so I was able to help him fall back asleep (breastfeeding magic!). As I sat there with him in my arms I began to think about photos of myself that stuck out in my memory. I thought of one from when Ali and I were traveling in Nepal. When I came back to my computer I went to my flickr account and found the Kathmandu, Nepal set. Although I originally had one of Ali and I together in mind, instead I chose this one:
We were sitting in a cafe on Freak Street playing cards and writing in our journals. It was August 29, 2004. We had been backpacking/traveling in SE Asia for a couple of months and were now in Kathmandu. During our stay there were several ‘bandh’ (strikes) in which sometimes we had to stay in our hotel and the streets were quiet; no one dared to go out. The strikes had been ordered by the Maoist insurgency (before they were in government). This was not one of those days and we found our way to the ‘hippie’ haven called Freak Street. When I look at this photo I remember how young and carefree I was. I am smiling at the man I will marry two years later. Did I know this then? Maybe. I’m tanned. Thin. I have my short, bleached blonde, funky hair. I’m wearing the necklace he bought me on an island off Thailand while he was traveling his way up to me from Malaysia, where we had met a month earlier. I am happy. I am living the dream of exploring places I never imagined I’d visit. I have no worries. Only an unmapped future before me. Which I embraced. Which brought me to where I am now. With my family. My beloved husband and son.
Sebastian’s first birthday. I am happy. All that I have experienced to this point has helped prepare me for this life. For this place. For this happiness. For this love.
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