I seem to have developed multiple personality disorder. I have always had different roles: mother, sister, daughter, friend, neighbor etc., but now I think I’m developing two separate personalities. I’m not sure of my North Vancouver’s personality name, maybe it’s Deb. Deb has many roles, like above. I do, however, know my North Carolina name. It’s Mother Bear. Above is a picture of my Pyrrha neckalce of a Mother Bear which symbolizes strength, ferocity & the protection of one’s children.
At home I’m organizing playdates & hockey games, meal planning, mediating sibling squabbles, life learning…. at times my mother bear personality comes out, when Trey has surgery or when someone is mean or rude to my children, but with two other kids and life, most of the time, that life is relatively mellow. At least compared to down here.
In North Carolina, I have one child and LOTS of MPS. Sure, I still meal plan, but even that is dominated by MPS: what meals are easiest to eat cold in hospital or transfer from hotel to car to long walk from rental car to hospital best. I think MPS (I’ve been waiting to read ‘Under Pressure’ by Carl Honore, but instead find myself reading about antibody development in intrathecal therapy in MPS I dogs), talk MPS and hang out with MPS families. And MPS is dominated by strength, ferocity and the protection of my child.
In the past week and a half, we have hung out with more MPS II families than I have ever hung out with in my entire life. Last week a 7 YO got dosed with us and a 4 YO went through qualifications for the trial (that was emotional!). This week, a 9 YO who qualified for the trial, but randomized to no drug, was here for baseline testing. Another boy is in the hospital getting his 2nd dose of drug. And yet another man, who is not in the intrathecal trial, but was the first person to participate in the ERT trial for MPS II, who relocated to NC for the trial, has been hanging out with us, whether in hospital while getting his weekly ERT or coming for dinner to the hotel.
It’s indescribable, being here. It’s like I’m a completely different person. It’s really intense and really wonderful at the same time. The intense part is pretty straight forward. Our kids are dying. I’ve met kids and men at all different ages and stages of the disease. Toddlers losing their skills and language, kids Trey’s age who are non-verbal, adults who are cognitively fine and doing well. All of us, fighting for life. This trial may just save them. At the very least it buys us more time.
The really nice part is that I don’t have to explain. At home I do a lot of explaining. Here, I don’t have to. Ever. Not why Trey did this or said that or has hearing aids or ANYTHING. It is SO relieving. It reminds me of being a new mum. You’d go to the park and get personal with someone you’d just met about diapers or sleep or feeding and the list goes on. There’s an instant connection and immediate relief, probably because of the intensity of being a new mum. I don’t get that connection with MPS at home.
In addition, not only do these MPS families already know my life and I don’t have to explain, but they love Trey. I LOVE that. All of Trey’s quirks and differences, well down here, they make Trey even cooler. Trey is a rock-star and it feels great. Here Trey can be free and do his thing and I can relax. Because the other kids are doing the same thing and the other mums and family members don’t even bat an eye.
At home I connect with my friends over similar values and beliefs. Here I connect with my friends over MPS. At home I have many layers. Here, I am a Mother Bear.
