As a special needs parent, I often find myself on “Can Island.” Can Island is an amazing little island where you are able to focus just on what your child can do – his sweet laugh, his cute deliberate crawl, his ability to make any box into a hat.
Unfortunately, as Max approaches his 3rd birthday, I’ve been having to make more and more trips to “Can’t Land.” Can’t Land is where your positivity and dreams go to die. Picture Los Angeles with more standardized evaluations.
By far, the hardest thing for me about being a special needs
parent is those mental comparisons to “normal.”
When I’m on Can Island, the joy of Max is so apparent. But lately, I feel as if I’m one trip to the
park or one birthday party from falling into the despair of “Can’t Land” where
it all just feels so hopeless.
I’ve decided the only way that I can stay positive is to
keep fighting for Max on all fronts. Not
just to make sure he gets the services and care he deserves, but more than
that. If I believe I can fight PBD, each
day feels a little less discouraging.
Over the past few months, we have continued to give it our best shot. Our Tee It Up! golf event was an amazing success raising close to $100,000 for research towards Peroxisomal Biogenesis Disorder (PBD). Two weeks after our event, we took off to Baltimore for another Global Foundation for Peroxisomal Disorders (GFPD) fundraising event (the Ilan-A-Thon 5K). While in Baltimore, I was able to tour the National Institute of Health (NIH) which has partnered with the GFPD to conduct a high-throughput drug screening to see if we can uncover any potential therapies for PBD.
Over the past few months, we have continued to give it our best shot. Our Tee It Up! golf event was an amazing success raising close to $100,000 for research towards Peroxisomal Biogenesis Disorder (PBD). Two weeks after our event, we took off to Baltimore for another Global Foundation for Peroxisomal Disorders (GFPD) fundraising event (the Ilan-A-Thon 5K). While in Baltimore, I was able to tour the National Institute of Health (NIH) which has partnered with the GFPD to conduct a high-throughput drug screening to see if we can uncover any potential therapies for PBD.
Scientific side note for the nerds out there: Essentially,
the National Center for Advancing Translational Sciences (NCATS), a subsection
of the NIH, tests various compounds already approved by the FDA to determine if
any of them have a positive effect on a cell's peroxisomal function.As newly appointed treasurer for the GFPD, I was also invited to attend the Annual GFPD Scientific Advisory Meeting, where PBD researchers from across the U.S and Canada gathered to discuss recent advancements and possible upcoming projects including the use of metabolomics technology, natural history studies, and gene therapy. It was amazing to see exactly where the Tee It Up! dollars raised are going – totally fulfilling, exhilarating and also totally terrifying. It was like one of those dreams where you show up to class and there’s a test, but you haven’t gone to class all semester and they use the word “metabolomics” a lot. (Metabolomics: the scientific study of metabolites present within an organism, cell or tissue).
Now, after things are all over, I realize I was riding on a bit of a “let’s cure PBD” high. As the dust settles, the reality has started to set in a bit. Max is doing great health wise, but the milestones we all want so badly, continue to evade us. And, although we are so much closer than we were even a year ago, we are still a few years and a few million dollars away from making gene therapy a possibility for PBD kids. So I take it day by day, but here is the favor(s) that I ask of you –
Stay, Pray,
and Play.
Stay: We are so
grateful for the support we have received so far, but this is a long
journey. I truly believe that the research we are sponsoring will not just
benefit Max or PBD kids, but society in general. There is so much left to learn about
peroxisomes that when you donate to the GFPD, you are actually helping guide
leading edge medical research that is likely to have many different benefits for many different diseases and disorders. We hope
you will join us in championing this amazing work. #yearoftheperoxisome
Pray: Every single
one of your prayers is appreciated. I
know the first instinct is to pray for a cure, but that is so very far
away. What we really need is strength
and guidance – 2 things that I believe only God can give us.
Play: I know there
are many people that read our story that we’ve never met or who have never met
Max. If you see us out, please introduce
yourself and take a moment to meet Max.
I guarantee you will fall in love and instantly understand why we fight for Max even on our most frustrating days.
Thanks again for your continued support!
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Man enough to handle a pink shopping cart.
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They see me rollin....
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| Laughing with Daddy on the 4th of July |
Last but not least, Max LOVES head rubs.
They're like Pringles - once you start, you can't stop. |
Max is so super adorable and I'm thrilled, not only by how much money your raised, but that you were able to see how it is being used to advance research in such a meaningful way.
ReplyDeleteCongrats and cheers to you for taking on the challenge of serving as treasurer for the national GFPD. You are remarkable.
I love the photos, especially the super sweet one of Max with grandpa Alan and your Pringles analogy. Thank you for sharing your experience so eloquently.
Dear Chapmans,
ReplyDeleteI've followed your journey through Max's life with PBD since Alan first began sharing your open and honest essays. First of all, I just want to give you all hug. But more important, I want to share with you an incredible lesson I learned while my wife was living for almost 4 years with a cancer that a few doctors thought would take her from us in less than a year. It was her second affair with cancer (she dealt with an entirely unrelated cancer 13 years earlier.) I had to stop myself from writing that she had a previous BOUT with cancer, precisely because I learned well the lesson from my wife that I want to share with you. And, given the content of your most recent essay, it would seem to be right up your alley -- it has to do with metaphors.
Immediately after her first cancer diagnosis, I jumped into that fighting mode so typical of my generation of men, and so rampant in the discourse of dealing with cancer and other life-threatening illnesses. But Keiko (my wife) absolutely hated fighting of any kind and simply refused to let the mind frame of fighting take over her life, especially at such a crucial time in her life. As I experienced her through those years, there were clearly 2 controlling metaphors in how she managed her life and her affairs with cancer. First, it was a matter of tending gardens of various sorts. One garden was full of flowers in our back yard, but there were quite a few others full of the people she cared for and whose love for her kept her blossoming far beyond her doctors' expectations. She was ruthless in weeding out the unwanted elements, but it was always with steadfast focus on the beautiful gardens of her life.
The second metaphor was that of a dance, with not only movements of harmony with a partner, but also elegant movements that depend almost entirely on harnessing powerful counterforces. Keiko was a master of that dance with her cancer.
Corinne, there may be times when you simply don't want to fight anyone or anything. I just want to know that there are other very useful metaphors you can adopt in your powerful efforts to protect and grow that beautiful family of yours.
Love,
Bruce Hawkins