Tuesday, July 28, 2015


Three years is a long time to not see your family. Joakim and Sarah are back in Sweden visiting with some family members they haven't seen in a very long time. Three years is also a very long time in a Mito kid's life. I have learned to say "Mitochondrial disease is a life threatening progressive disorder" without attaching emotions to that sentence. I can say it without falling apart. I also don't see the progression of Jacob's disease from day to day, only over time.

It has been three years since Jacob and I were alone for half a month. It is quite a different story today versus three years ago. This is when I can see the progression of Jacob's disease. It's funny how your memory fades over time. What I remember from that time is many hours at the pool, Jacob and I. I remember putting Jacob to bed and Jacob actually sleeping. I remember carrying Jacob being no big deal. I remember no colitis, no dysautonomia. I had a really good support system in Jacob's nurses Gemma and Libby. I was sure happy to have Joakim and Sarah back home, but it was also a special time to be alone with Jacob.

I have felt really challenged to be with Jacob alone this time. I am limping around the house in this big boot due to a fractured foot. I can't move around fast enough for Jacob, and at the same time I am not able to keep my foot in the boot as much as I should due to caring for Jacob. I don't have a good nurse team in place. I have really high hopes for our new day nurse, but she started three days ago. This means that I am never taking down my guard when it comes to Jacob during the day. I am still the one making sure things happen at the right time, watching for seizures and good breathing. And then we have the long nights following the busy days. The care for Jacob never stops. His oxygen can dip during the night, Jacob's brain doesn't let him sleep, or like last night I was monitoring seizures for hours. I was medicating Jacob close to midnight and then holding his little body, and finally letting the ugly cry out. Tears of exhaustion and this feeling of having Jacob's life on my shoulders. Tears because I so deeply love this boy.

When the morning comes around and you have had a chance to rest a little and your body has gotten some necessary caffeine, things always look up. We didn't end up in the ER overnight, we're still at home. Jacob is breathing, and getting a break from seizing.

We had a couple of doctor's appointments leading up to Joakim's and Sarah's Sweden trip. We saw our Belgian Mito doctor. He left me with three things. Jacob's liver is showing signs of illness but it will take decades before the liver will stop working. Jacob's mitochondrial disease is the bigger monster. Nevertheless, we're adding a liver doctor to Jacob's list of specialists. He also stated that he can see Jacob's disease slowly progressing. There was no "I'm sorry" or words to soften the sentence, just a fact. Because of the way he said it, it sure stuck with me. It got me thinking of our boy, and how he is changing. Lastly, he said that he has nothing to add to Jacob's care, since he is receiving the most excellent care. Coming from a man who fully understands Jacob's disease and all the interventions and management we do every hour of the day, I did take it as a compliment. I also loved how his face turned into a big grin when Jacob decided to end the doctor's appointment by telling his most intelligent Mito doctor: "I am cool and smart".

We also got to spend time with Jacob's endocrinologist this past week. She is growing on me every time we see her. She and Jacob have a lot in common. They are both steroid dependent for different reasons, and she truly understands what it means for you and your body to be dependent on steroids and what little changes to your steroid dose can do to your whole body. She called me after her surgery to tell me how it feels when you wean your steroids too quickly, something that has happened to Jacob on more than one occasion. She also told me she was thinking to call me on Mother's Day. She is managing 21 medications for her disease, always weaning at least one medication. She got to think about me and how I do that all the time. It was a nice recognition for something I just do every day. It is not unusual for us to have daily med changes in Jacob's life.

So where does that leave us three years later. First of all it gives me an incredible gratitude that Jacob is still in our lives. It also gives me an incredible joy to have gotten to know my Jacob through his talker, something we didn't know as much about three years ago. We still will make it to the pool this time - boot or no boot. But it has also made me realize that three years is a long time in Jacob's life, and things change. There will always be more things to manage, never less. And I do need my support system of my husband and my nurses to give Jacob the best life possible. It takes a village.

Jacob three years ago:

Jacob today:

This is to hopes for a seizure free night. Love, Maria.

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