Sometimes I feel normal. I pick weeds from our garden peacefully or sit and flip through recipe books with curiosity or chat with a parent at a birthday party about parenting, and the conversation feels genuine. Real. I’m fully present and interested, not just going through the motions.
But MPS never fails to remind me I’m not normal. It never fails to remind me of the fragility of life. For the past three monthes, someone in our immediate family has gotten sick the weekend before Trey’s monthly intrathecal (IT) dose (every fourth Tuesday). Two doses ago in early April, Sadie woke up Saturday morning with the flu and a fever of 103. For the next three days, Sadie was not allowed to leave her hotel room and I spent my time washing hands and sanitizing every wall, door handle and countertop Trey may possibly touch. Trey got his dose, but four hours later came down with a high fever. Last month, Avery got a cold the Saturday before Trey’s dose. Trey got the cold by Sunday/Monday, but I was able to keep it at bay enough (with supplements) until Tuesday, so that Trey got his IT enzyme.
This past Friday night, Ryan came home with the stomach flu. He was supposed to leave with Trey and my mom for UNC Sunday. I spent Friday and Saturday contemplating if I could find last minute childcare for Avery and Sadie so I could fly with Trey instead of Ryan, if my mom could go to UNC alone with Trey (I’m not sure if a parent needs to be there for consent and dose), if my mom and Trey could fly as scheduled and Ryan could fly down Monday, if we should spend our savings and send Ryan to a hotel until Trey left for UNC…
Instead, Ryan promised me that if he flew with Trey, he would not touch Trey or anything Trey would touch (suitcase, his hotel room etc). My mom would sleep in Trey’s room, brush his teeth, take him to the bathroom, grocery shop etc. I sat there (and sit here) wondering if that was good enough.
Until they left today, Ryan was not allowed to leave his bed other than to use the washroom, and the washroom was cordoned off so the kids could not enter it- they got to pee in a bucket and wash hands in the kitchen. When Ryan had to get out of bed Saturday to pack, I made him wear surgical gloves and I followed him around, bleaching everything he touched. At one point, I asked him to go wash his hands. He said: ‘I just did.’ Me: ‘Did you notice that you scratched your nose about a minute ago? Please can you wash your hands again?’ Ryan is not quite as OCD (or crazy) as me.
Over the past years, during the first monthes of Trey’s IV Elaprase infusions, then for IT trial qualifications, and now for IT doses, I have sanitized airplane trays, windows, head and armrests, rental car doors, handles and booster seats, hotel room counters, phones, remote controls, and more. We have skipped play dates and birthday parties… far more than I can count.
The thing is, first IV Elaprase was saving Trey’s life. Now this intrathecal drug is REALLY saving his life. IV keeps his body in check, IT keeps his brain in check. I cannot even describe what the IT enzyme has done for Trey, and for our family. Most of you won’t know what a big deal this is, but Trey, with my help, typed two letters to his cousins this week. They were short, only two sentences long, but a year ago, Trey wouldn’t have been able to do this. He was losing patience, concentration, language, letter recognition and never would have been able to complete this task. Every skill that Trey maintains and/or gains from now on, is because of this intrathecal drug. Without it, Trey would be losing- EVERYTHING. So when someone gets sick, which literally threatens the life of my child because if Trey is sick he can’t get his IT dose, I go into mother bear mode.
And this mother bear mode reminds me that life is fragile. And that even though I have never been calmer and more amazed by life than now, since Trey started receiving this intrathecal drug, no matter how fabulous the drug is and how much it does for Trey, I won’t ever be calm for long and my life will never be uneventful. I will always be fighting for Trey’s life. It is those moments that make me ever so grateful for the MPS community who truly and completely understand, and for those of my friends and family, who although they don’t understand, are there for me completely, with full hearts, and who don’t walk away when things get tough. I love you!!
Now that Trey, Ryan and my mom are off, I have done everything I can. Now I wait for Tuesday. Maybe then I can begin gardening again with peace. At least until the next dose…
