I was thinking as I was driving today about our journey. Rare is definitely a way to describe it. We have explored so many different ideas over the years (Jilli's first hospital stay they thought she had a brain tumor and were unsure she was going to leave the hospital...thankfully that was not the case) and so many of them have dead ended. Today I sent a message to genetics asking if they have sent Lydia's blood to the lab yet. Hopefully our next step is NIH. It has been quite the journey!
The other thought that came to mind was community. From online groups, to working with Tubie Friends, to rmh... community is something I am thankful for on this journey and something that I would encourage anyone on a rare journey to seek out.
This wasn't what I thought of when I pictured a family while pregnant with Jillian, however we have learned to embrace the rare. We see how it has shaped them as people. Jilli was asking to Target while in the hospital and I asked her why she wanted to go to Target and said said "so I can buy toys for the magic room at RMH to make other kids happy." I see how this journey has shaped their hearts.
So what does rare mean to us:
It means the most frequent measuring tools in our house are the 4 cup measuring cup (water to make formula) and the 1/2t (Jilli's salt)
It means our counter and sink are both full of syringes
It means there is a section of our cupboards and fridge just for medications
It means oxygen lines across the living room
It means medical supplies lining our hallway and our bedroom
It means oxygen tanks in our front entry
It means special chairs inside and outside of the house
It means getting good at reading medical reports
It means SO MUCH paperwork
It means seeing doctors more then most people
It means a diaper bag full of medical supplies
But what it doesn't change is LOVE
When I was driving today that song Thrive by Switchfoot came on. The lyrics say "A steering wheel don't mean you can drive, A warm body don't mean I'm alive, I wanna thrive not just survive" And another thing I can promise you is that my girls thrive. They don't just survive. They thrive! They are amazing wonderful girls who serve a purpose in this world. I know often in this American view of what life is (where our self worth is tied to sports, jobs, money, fame) that people with health needs don't fit into the picture of thriving but my girls are thriving! Jon Foreman's song Terminal says "Some folks die in offices one day at a time, They could live a hundred years but their soul's already dying, Don't let your spirit die before your body does, We're terminal, we're terminal, We are, we are the living souls, With terminal hearts, terminal parts, Flickering like candles, shimmering like candles
We're fatally flawed" And I see how these girls and our family have a different view on life because of the rare... and that causes for us to search to not just get tied up in yelling at traffic and angry at fading things, but to use this life to really thrive, even if that looks different.
Last night and today I have been messaging with our amazing GI doctor about another idea she had some something off the wall to test... all tests at this point are for "off the wall" things. We are going to try a month without erythromycin because it call elevate her one urine test sometimes, and it is also good to every once and a while to make sure a med is still needed. Jilli has been on this med for 4 years. When she went on it there was still possible thought of oral eating but we are no longer at that place and now we use it to lesson g draining however she gets less then 30ml out a night (many nights closer to 5-10ml) and we don't see a difference between the nights that she is on it and the week a month she is off it, so we are going to see what a month off does. If her drainage goes up then we can talk about going back on. This doctor was also in our Nelson's meeting so we talked a bit about that too.
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