Adapting

River has been home for more than 6 weeks. It feels like it's always been this way. We have many things to be grateful for including our team of care providers. Excluding overnight care, most of River's needs are covered. We even have one respite provider (we could use another). We have an amazing community of friends and acquaintances bringing us meals to help with the adjustment. However, raising a River, is hardly relaxing. I always have an ongoing To Do list in my head or my notebook. I hope that there is nothing I forget (there always is) and I hope what I do forget isn't critical.

One of my projects is an advocacy project. I'm hoping to collect videos and pictures to put together a movie of River. I'll use this video in our appeal process. As it stands now we don't have enough funding to maintain River's in home supports for the rest of the fiscal year. I'd also like to have some overnight care.  We made a similar video more than 7 years ago when River was a wee little guy.  (I just watched it again and cried.)

And here's a bit of what else... We're fighting insurance companies for coverage of medication and formula.  I'm coordinating appointments, including an upcoming MRI where they'll also do a spinal tap and take pictures of his retinas. We're communicating repeatedly with local and state agencies to sort out why all of his funding isn't available (so much red tape, not to mention overworked employees and inefficient systems). We're trying to stay on top of the school system to make sure he gets his FAPE (free and appropriate education - do I really need to do this people? Isn't this the law?). All this while training new providers, coordinating staffing schedules, keeping medications and supplies stocked, working full-time, raising another child, maintaining adult relationships and maybe, a little self-care.

We're all adapting to this new life together, growing and making memories, loving each other. I couldn't do this without my partner, my friends, my community, my neighbors, my work. Every bit helps.

Appeal

I have an energizer bunny brain. It never shuts off. So it's 10:15 at night, I've had one of the hardest weeks in a long time, am fighting off a cold, yet my brain is still churning, processing. I'm thinking about the appeal process.

Before River was discharged from residential care we requested specific (financial) support in order to care for him at home.  Without getting into all the details, we were given some of the requested funding, but not all.  With the budget we were given, we cannot afford any overnight care.  

The state's reasoning for this decision was that the type of supports we requested, "are designed to support not supplement care by family for minor children." Does that feel like a dig? Are they trying to tell me that I'm asking for too much? That not getting a decent night sleep is part of my responsibility as a parent... of a 10 year old? Most of my friend's 10 year olds are sleeping pretty well, aside from the occasional stomach bug or rowdy sleep over. In fact, they get to sleep at other people's houses. They get up to go to the bathroom on their own, and definitely don't wear diapers. They can get their own snacks.  They can cough without aspirating. They don't need to be monitored for sleep apnea. They can call for help.

I'm fuming. And I'm afraid to go to sleep tonight because I know that River has something going on. He's been coughing more and his breathing doesn't sound good. I would listen to his lungs, except I left my stethoscope at work, and I don't want to be his nurse, I want to be his mom!  

We are appealing the state's decision, but the fact that we have to go through this process, is beyond ridiculous. It's just not what we need right now. 

River's Mummy

Here's a pic from little (big) brother's play tonight. River got to be there, but it was a little overstimulating for him. 

Connection

There's a lot swirling around in my head these days, and making lists does not seem to be enough. I need to write these thoughts down, share them with others. Raising a River can be so isolating, or it can be connecting.  I need it to be connecting. I need to be surrounded by my village. I can't live this life without all of you beside me in some form or another. This week it means posting some of my darkest thoughts on facebook, and knowing that you are accepting them, and loving me regardless.  It is asking for help, and having others show up when I most need it.  

This week, has been so much harder than I thought it would be. Truthfully, I didn't really spend much time thinking about what it would be like. Just like when you have a new baby, you can only do so much to prepare. This was it. Except it was also attached to grief. Almost 10 years of grief that I've been carrying around with me. The grief of giving birth to my first son, a child I dreamt about for most of my life, with a brain malformation. The dream that I had, would not be. In fact, it often felt like a nightmare. 

We spent so much time in survival mode, just trying to bring River comfort. To understand why he was screaming at 4am and why was a bath the only thing that wold calm him? Why wouldn't he take a bottle without me bouncing him and running the vacuum cleaner nearby? Even then we had to feed him every hour for him to (barely) gain weight. Failure To Thrive. Microcephaly. Intractable seizures. Don't google any of those, especially when you're alone, holding your baby boy, wondering what the future holds. 

This is where I have been this week. The grief and desperation and broken dreams. 

This week I've also been on the phone with insurance, nurses, school, pharmacies, lawyers, social workers, case managers and physical therapists while trying to work full-time, re-learn all of River's medical needs, train new care providers, attend to our 7 year old (whose world has also been turned upside down) and our relationship. It's just not possible.  I was pretty sure we were going to fail.

And then there was an offer of a meal, and a playdate... a glimmer of light. A dear friend encouraged me to consider starting a meal train (an organized way for people to provide meals or financial support) to help us get on our feet. It's hard to ask for help, especially when I don't feel like I've been able to help others when they asked. But it's working... not only did I get a tremendous amount of emotional support on facebook, but people are actually signing up to bring meals for the next couple weeks. We feel loved, we feel nurtured. I'm still exhausted, but a little less overwhelmed. Suddenly, it feels like this might be possible. We'll find our routine, our care providers will become independent, little brother will adjust and we'll (eventually) find time for a date. 

Signing off for now,

River's Mummy

Inclusion

Happy Boy!

Natural Inclusion

Entourage

Picture Day!

Mr. Sunshine

River and Barbara Miles

This is a snapshot from River's recent visit with Barbara Miles from the I-team. She is a specialist in deaf-blindness and was able to make a great connection shortly after meeting him.