Recently we (and I mean a 7-person collective “we”) attended the 25th MPS Family Conference held in St. Louis, Missouri. Hopefully, we got to meet many of you there. I was also humbled enough to get to speak about the ups and downs of being involved in a clinical trial. Since I only spoke for 15 minutes, hopefully I didn’t bore anyone to tears or REM sleep. I was asked by several people to post the presentation and it is below; also, the entire conference materials and videos will be posted on the National MPS Society website soon.
I find that the annual conference is such a unique aspect of our MPS/ML community. Although for most of the year, we long for an island or other communal living where we can all accept each other’s kids, trade respite and infusion care, provide physical shoulders to cry on, and share and trade equipment, these few short days are the drink in an often too long drought of geographically close MPS families. I often wonder that if we didn’t live so far, would we treasure these days as much?
Meeting and reuniting with other families, to me, is among the top (if not the top) highlight of the conference. But it is also difficult to weigh it against the access we have there to top doctors who specialize in caring for children like ours. And special doctors they are, who revel in the complexities and fascinations of MPS and ML, but who can also see the twinkle in little eyes that many outsiders just gloss over.
The conference also celebrates and embraces the uniqueness of each of our children. Although they may share many characteristics, symptoms, surgeries, and equipment, they are each a sweet soul unto themselves. Discovering and enjoying each child’s special qualities is my selfish activity at the conference. They are all so, so special. No one is phased by hyperactivity, the escape artists, the potty accidents, the chewing, the errant screams and wails, the flailing, the hitting, the tube feeding, the gait belts, the wheelchairs, and all that can accompany our lives. Stares are those of love and inquiry – “Now, are we friends on Facebook? Isn’t that ____?” – when you know the child’s picture better than the parent.
I’ve insisted to my husband that we will never miss a conference. This was our third one – every year since Case was diagnosed. Now, I know that life happens, but as that last night of sharing and commiserating winds down, I always feel like I’ll fight to the death to make sure we go every year. I miss you all already.
My presentation, if you missed it:
A little note is that while the slides are lighthearted, some of what I shared verbally was not. For example, on #7, doing taxes in a hospital room – those photos represent all the things missed while being involved in the trial – birthdays, graduations, baseball games, and the like. Almost all of those photos were texted to me during the missed event. I also shared about how being in a trial teaches you more about fighting for your child and what they need, about how to learn more about the disease from the doctors and nurses who see many of these kids, and about what you can live without (and what you absolutely must have … video players, baby gates, and dry shampoo).