Fractures, fundraising and frustrations....

Over the past few months, I have not been up to blogging and honestly I debated writing this post as I have a feeling it might not make me particularly likable.  However, I realized I’m not going for Sainthood here (that ship sailed in college) and that if I’m going to document our journey, I have to be honest.  These last 8 weeks, I have been filled with exhausting and overwhelming anger.

When Max broke his leg 8 weeks ago, something in me snapped (pun intended).   I felt the wind knocked out of me.  Sitting in the ER as the nurses came in and asked us over and over again how Max broke his leg, I could feel the anger growing.  Knowing that at 2 years old, PBD had already taken such a toll on his little body that the hardest bone in the body to break had broken because he sat down a little wrong - and that the nurses didn’t believe me.  Knowing that all the crawling and exploring that he was finally getting a chance to do would come to a screeching halt only furthered the anger.  Also, he stopped sleeping because of the cast which was not great for the psych either.  

Then, came the fundraising video.  In the video, I state that Todd and I do not like asking for money. This is an understatement - I hate it.  But Todd and I feel passionately about the Global Foundation for Peroxisomal Disorders (GFPD) and what it is truly capable of.  It is truly the shining light of this disease.  The problem when you feel THAT passionately about something and you put yourself out there, when people don’t respond, you get personally offended.  How could that person NOT share the video?  How could they NOT donate to the GFPD??  The rationality of the situation goes right out the window (lack of sleep, once again does not help).

And then someone said the one thing that you should never say to a parent of a terminally ill child: “I believe that any disease can be cured if you believe in God enough.”  Now, I believe in the power of prayer and I realize this statement is made based on hope and positivity, but from my angered self, all I felt was blame.  If Max does pass away, is it because I didn’t believe in God enough?  Do people really think bad things only happen to people who just don’t devote themselves to god?  Perhaps, Max is sick because I’m being punished for my past sins?  It took me two years of working through my own self blame to confidently say I don’t believe this is the case and if you believe this, I beg you to change your mind.  After all, how could it be true when I look around at a GFPD conference and clearly see parents that believe in God and all that he is capable of and their child still passed away.  

Altogether, the broken bone, the frustration of fundraising, and the feeling of being judged was too much.  The anger took over and I became miserable.  I could feel myself laughing less and judging others more.  Dwelling on those that chose to ignore our initiative instead of focusing on the amazing love being sent our way.  

Then, it finally arrived - the total donations we received.  Up until this point, we had no idea who had donated or if anyone had donated at all.  In the words of one of my favorite Drs., my heart grew 3 times that day.  I was floored to learn we had raised almost $20,000!!!  Just thinking about all the possibilities and hope this money brings, I can feel the tears filling my eyes (You: You’re a bit emotionally unstable, huh?  Me: Duh).  Even more amazing is the list of people that gave, which included over 150 people, some which we didn’t even recognize.  I am so thankful for each and every one of these donations and can’t emphasize enough all the wonderful things that the GFPD can do with these funds:

1. First and foremost, it provides medical grants to scientists and researchers specifically focused on PBD (who we have met and are just as kind and brilliant and nerdy as you would want them to be)
2. Provide shipping costs for exchanging medical equipment with other PBD families
3. Provide sponsorship for families hoping to attend the GFPD conference
4. Additionally, the GFPD has no staffed employees, so there is 0% overhead.  

So basically, you are directly helping families affected by PBD and giving them the hope and support they so badly need.  If you haven’t given and would still like to make a difference in the lives of these kids and their families, please visit thegfpd.org and click on “support.”  

But back to being thankful - Every share of the video, every donation, every kind word that has been said - we are really so so thankful.  The generosity and kindness that has been shared with our family is more than we deserve (ok - more than I deserve - Max and Todd are pretty awesome).  From the bottom of my slightly larger heart, thank you.  

Post-broken leg - still breaks my heart

Max hanging out in his favorite place

Part of our PBD family

Cast off, blast off! 

Happy 2nd Birthday Max!