When you are graced with the chance to give birth or raise a child who is medically complex you get to become something you never planned to be (unless you were already one) - a doctor. A clinician.
A saver of lives.
Or in this case - saver of just one life - your child's.
Somewhere along the line - probably about the time Dr Lindblade told me what was wrong with Alexandra at her first fetal echo - I decided I would tear myself apart to save her.
I put my own survival along with hers - because I meant nothing without her.
I had to become medical researcher, doctor, nurse - rarely was I playing the true Mom role. All Mother's are charged with keeping their children alive - but more than anything they were to raise their child to survive in the world - I just focused on keeping her alive for now.
And maybe that's all you really have when you live this life - the now.
Maybe that's what all life is.
I went back to college because honestly we needed the extra grant income to survive - I couldn't work full time and be able to take care of Alexandra and daycare was out because of her condition - let alone the astronomical amount of money it costs.
I've never really been her Mother. I've been her doctor, her nurse, changing her GTube dressings, ensuring she eats enough, drinks enough, ensuring she gets to all her doctor appointments - that she gets the therapies she needs - advocating for her.
I never once advocated for myself. I never once attempted to do something Motherly - because no matter what I would do with her - I always had to have all this preparation. Prepare the meds, get the formula all situated, make sure you've got extra GTube pads and tape, make sure you've got bolus syringes of Gatorade cause you'll be busy at some fun event and she won't drink and eventually she will get so dehydrated she will start to turn bluer than she usually is and now it's become a problem.
I haven't been her Mother.
I became the person who would save her life because in that saving of her life I would save my own.
Here I am - a week away from graduating with my Associates degree and I am waking up to what's around me -
The dust on my blinds is an inch thick, the laundry pile is filling up the hallway, she peed the bed two days ago and she's been without sheets on her bed for the last two days, there's crayons and papers strewn all over her room, toothpaste all over the sinks and vanities, I haven't actually "grocery shopped" in about 3 weeks.
There was a scorpion in her backpack at school.
What I am trying to say is - the moment I heard of this scorpion incident I immediately blamed myself. My house is dirty. They are attracted to the dirt. (Not true but I'm trying to give you a sense of what goes on in my head)
I haven't heard from Chicago yet and I feel like it's our last option of something that can save her life and I keep calling but they don't call me back.
Boston never did that. But they aren't the only doctor in North America who does this innovative procedure for Abernethy Malformation - and we don't even know if he can do anything yet.
My house is a mess. I've either been at school or at work for the last 9 months.
It shows on my face, in my home and on my children.
I am for the first time going to say this in a total this is the real truth real talk - I am depressed.
I have depression. I have PTSD. And that scorpion in her backpack today became a trigger. And I crawled into that hole inside myself that cowers at the thought of her dying.
Because I've invested all myself in her. I saved nothing for me.
And all Mom's do this. And those of us who have medically complex or chronically ill children do it more than you can imagine. We pull ourselves apart. We rip our outsides and insides to shreds over this.
After all - they are our babies.
I don't know what's going to happen. I see the light of the break that this summer will give me and I'm falling apart. I'm falling apart from having to hold it together for the past 9 months.
I worry I will never achieve my dream of being a teacher.
I mean I'm sitting here at the table typing this sitting between grocery bags full of groceries that I have no strength to put away.
I can't go on leave from work, we have bills to pay. Again, I don't have time to take care of myself.
I am depressed. I set the alarm for 5am every night making plans to get up and shave my legs and put my makeup on and look all put together - to push the snooze button for 2 hours. Then to have to literally push myself up out of the bed.
I know we can survive this.
I can survive this.
We can do hard things.
But right now hard things include just standing up.
Happy Mother's Day.