As I sit down to write this note, my head is filled with the sameness of our routine. The days turn to weeks often without much change which is a tremendous gift. Chelsea’s care and day to day activity does not waver. Our schedule is as “tight as a drum” with her wake up times, medications, treatments, range of motion exercises, shower, and getting outside for a walk. Our daily routine is almost always accompanied by Chelsea’s sweet lovely smiles which lets me know she feels the love and joy around her. Her sweet demeanor and contentment is what gets me through the days. She is a blessing and is being watched by angels…who I think are watching over me too giving the strength I need to carry on.

I have just reread my update from December 2012 and had to smile as I watched the “wakeup video” of Chelsea. It amazes me how this sweet child of mine, now 23, is filled with so much positive energy…on most days… even though her mind and body have been robbed of so much life.

Overall Chelsea’s general health is good. While that does seem strange to write considering how Lafora has taken all her capabilities away, she, for the most part, remains in stable condition. She has experienced two minor lung infections this past year which were caught in the very early stages, because we monitor her oxygen levels daily. This is just part of our routine. When her levels drop below 90%, for any extended period of time, I know she has some form of congestion brewing. She still has a very strong ability to cough, which does help get the “junk” out of her lungs and with our aggressive use of the VEST treatments done three times a day…this junk is able to be released. A good 5 day dose of Azithromycin kicks the nasty infection quickly and she responds well to it. I think she remains stable because we…her nurses and me, are on top of every little thing that affects Chelsea.

Chelsea has become increasingly more vacant in her being this year. There are times when it appears that she does not see nor hear and has little response…she is lost somewhere. These days are the most difficult to get through in every possible way. It is as if the air has been sucked out of the room…it becomes difficult for me to breathe and be able to think of any hopeful tomorrows. To the flip side of that, however, there are those rare days when she is “over the rainbow” with glee and excitement. I don’t know if it is a random neurologic impulse that creates this mood within her but I will take any day like this.

Just a few weeks ago, we had to make a trip to the doctor’s office because her leg braces created a large bruise across her foot which then became swollen over night. It looked horrible and painful, but Chelsea woke with a huge grin on her face and giggled and wiggled the entire day. Her nurse and I were laughing all day, and could barely contain her in her wheelchair, as she was absolutely hilarious. She even tried mouthing words as though she could speak….and of course all with a giant grin on her face. At times she even gave us the “Elvis lip”…which if you’ve seen Chelsea do this…will crack you up.

I don’t need to understand any of this. I have learned over these past almost 9 years living with Lafora to take what is presented me and to interact with it in such a way that allows me to be empowered. This is the only way I know of to stare down Lafora and say “Back off”. Lafora is the absolute most horrific disease that affects young people, but with all its awfulness…I have learned to see the joy and beauty in it, maybe by accepting that I cannot change this course. I know it sounds crazy, but this is what helps me get through the day and in turn keeps Chelsea doing well and staying as healthy as she can.

This is her life…my life…our life…we are doing the best we can, with what has been dealt. Do I wish it were different? Absolutely…every single day.

By the grace of God, the brilliance of our dedicated scientists, the support of amazing family and friends…we will be alright. It is how we define “alright” that makes the difference…at least for me.

I am filled with love and hope as the New Year approaches. Whatever may cross my path, I am ready for it. I’ve grown these past number of years and realize I am so much stronger and wiser than I ever thought I could be…all of this I attribute to my beautiful and courageous daughter, Chelsea.

Always with HOPE,
Linda