I've never met a metaphor I didn't like....

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 3^rd 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. 

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!

Man enough to handle a pink shopping cart.  

They see me rollin....

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.

Blurred Lines

It’s been almost a year since Max has been diagnosed, and with each day I become more and more aware of the fact that I hate being a PBD Mom. There - i said it.

I hate when the first thing that someone says is “So how IS Max” and I have to fake enthusiasm because it’s 9am on a Tuesday and crying will ruin my eye makeup.

I hate the deep jealousy I feel when I see other people’s 1 year olds mastering milestones that Max struggles with every day.  

I hate that everyone  immediately tells me how tired my son looks.  1.  you’d look tired too if your body was fighting half as hard as his is. 2.  That’s just kind of how he looks and we think he’s adorable, ok?

I hate that the financial security that we worked so hard to establish and secure is now in jeopardy

I hate the doctors appointments and the blood draws and the massive amount of medical equipment we now own.

And of course, I hate that I’m going to lose him.  Something that, despite my best efforts, I think about every single day.  

But with each passing day, I also become more and more aware of the fact that I love being Max’s mom.  The kid is pure joy.  Never upset.  Never angry.  Never whiny.  Just happy and loving.  He has taught me to take each day at a time and to never give up.  He has given me strength and a purpose that I didn’t know I needed.  

But honestly, I still struggle to separate those 2 entities - PBD and Max, because every day with Max is dictated by PBD.  When you’re in the ER for the second time in a weekend?  Or when Max rips out his hearing aid for what feels like the 100th time that day? Or when Max is so constipated that he’s screaming from pain, how do you keep your thoughts away from frustration with Max. Because all that frustration isn’t with Max, it’s with PBD, but the line sometimes feels so blurred.  

The more blurred the line becomes, the more guilt I feel about my constant frustration and sadness. It is only recently that I’ve been able to make peace with the fact that it really is okay to hate being a PBD mom and that does not mean i hate my son.  I hate being a PBD mom because I love him so much.

And how could you not love him....