Drinking Out of a Fire Hydrant....With a Straw

We must be willing to let go of the life that we planned 

so as to have the life that is 

waiting for us.

 - Joseph Campbell

Things are beginning to settle into a routine for us. Oliver is being privately tutored three times a week as well as getting speech, occupational and physical therapy at home. We are now trying to tackle a system for charting his every move with our 6 (about to be 8) weekly caregivers. Some patterns are already emerging that are helping us understand how the muscle weakness, eye issues, GI problems, clumsiness, aspiration issues, respiration challenges, etc. all fit together. 

It is not like it is bad for him all day, everyday. There are so many smiles and dance parties and joyful frolics on the beach. If you are lucky, you may get a head leaning towards yours and he'll let you kiss him. But his symptoms are like a moving target. Yesterday we saw: wandering eyes, dizziness, fatigue, cold hands, hot body with no fever, sweat beads on his face, intermittent heavy breathing, dilated pupils and some aggressive behavior midday before he got a pain med. That was a sample day for us and was only 4:00 pm. 

I have been taking a deep dive into understanding Mitochondrial Disease, and I'm wishing I was a stronger student of microbiology. I wonder if I will ever feel like I am reading English again? In the event Oliver gets a MNGIE diagnosis in the next few weeks, I have been hunting down clinical trials and treatment options. 

We've kept Oliver mostly at home the last week or so. Not only does he prefer to be at home (autism), but managing illness and infection is much more involved with Mito. We have an IEP meeting scheduled with the school on January 30th to discuss our plan moving forward. We don't want to make a decision about full time school transition until we hear about the results of the genetic tests. 

I feel in the past we were not sensitive enough to how much routine, stability and environmental control Oliver needs to thrive. I have not been in our house for 24 hours straight, willingly, in my adult life. I would have to been super sick or snowed in to stay here that long. It has taken this rather extreme extrovert (who loves to bee-boop around town) a long time to understand her house-cat son, who has a temperature comfort window of 68-78 degrees. I frequently get sad thinking about how house bound my motherhood journey has been. 

Until the end of February (when our 11 follow-up appointments and procedures will be over and we'll be 6 weeks post operation on the g-tube), we will be sticking close to home base. We want to keep illness at bay and get rested. Since none of us have slept well since September, we all have lots of of catching up to do. Andrew and I are going to bed early, but rarely make it through the night. Our dreams are haunted by this world we are living in with so many unknowns and bleak realities. It is unsettling to know that the most difficult days of your life are ahead of you. We believe our best days are too, but you know what I mean, right? These are emotionally depleting days.

The Gofundme page that our friend set-up for Oliver's trust has been such a blessing. It is a huge encouragement to know that we have additional resources to cover Oliver's needs, which have grown exponentially. We have been deeply moved and touched by the generosity we have experienced. We have never felt alone in all this, and it is a credit to each of you. You have lightened this part of our load and for that we are so grateful. 

The talented Will Page took these pictures of our family this week at The Arboretum, which is fun since that is where Andrew and I got married 12 years ago! Will has a really cool project he is working on called I AM ILM, in which he featured our family's story (and love affair with Wilmington).

All of this still feels like drinking out of an exploding fire hydrant with a tiny straw. We will get the hang of it eventually. How are we going to do that?  We'll keep showing up with our good attitude (and a HUGE cup of coffee) every morning, grateful for each day (which we do not take for granted). We know all our days are numbered. Each new day that comes we savor, we snuggle, we love so much it hurts, and we vow to keep giving everything but up.