Well, it's been on tough year as you can tell by my lack of blogging for the past 11 months. I've started to write a least a dozen times over the last year but have really struggled with what to say.
My life over the last year feels like it's imploded and all I can do is watch it unravel and fall to the ground in pieces. I keep trying to hold it all together but I realize that I can't control what is happening, all I can do is keep focusing on the future and the positive things in my life. As I lay here having a moment of self pity, I'm snapped back to reality as Kayla's oxygen levels just dropped.
It's 1:00 am now and I'm sitting here with Kayla in my bed listening to the sound of the oxygen concentrator humming and sighing in the background and the pulse oxymeter alarms going off every few minutes, I wonder, how did I get here to this place in my life? I remember years ago when life was simple and the biggest decision I had to make was something that I would find so silly and insignificant today. Now my life is full of doctors, machines, alarms and lots of sleepless nights. The sound of the alarms bring me back to a time when Kayla was on a ventilator so how can I feel bad about where we are now? Now my life is full of battles with the school system who believe that kids like Kayla don't deserve to go to their home school but instead belong in what the school district calls the "severely handicapped" class. As a mom, all I want to do it protect and fix what is happening to Kayla but tonight I sit here feeling helpless.
Tonight, I let my mind wander to a forbidden place; a place where I usually keep the door locked with ten padded locks. I tend to be a hopeless optimist but as I lay here watching Kayla struggle just to do what all of us take for granted, breathing, I wonder what the future holds for her. All of my other problems pale in comparison to what Kayla goes through everyday. I wonder if my friends who are busy coming and going from Italy understand what families like mine go through every day in Holland. ( Welcome to Holland ) But then I think, I wouldn't exchange the lessons I've learned over the last 5 years for anything in the world, unless of course, I could trade it for Kayla to have a healthy life. Then I remember all of my friends who have lost kids and think how can I be so selfish to think like that. I feel so lucky to have Kayla here beside me teaching me lessons about life and unconditional love. Tonight I've been thinking about dear friends of mine and what they are going through with their beautiful daughter who has Down's Syndrome and who has been in the fight of her life this year going through chemo therapy for a brain tumor.
My mind is racing in a thousand directions right now but I force myself to stop and remember the things I'm thankful for. I think about how lucky I am to have been born into the most loving and supportive family ever. I've been exposed to so much by the work my parents did while I was growing up helping under-served people around the world. I have supportive siblings and a sister-in-law that I consider good friends. I have amazing friends and family who would drop anything to be there for me. My cousin Leigh came down from Lake Tahoe last night to help me pack up my house to prepare for a move. I have to sell my home and although it's just a material thing, I feel like I'm also packing up a dream. I imagined moving into this house 6 years ago and having 3 kids and being a soccer mom and volleyball coach to my kids. The reality is a little different now and I'm finding a way to gently let go of that dream so that I can live in the present moment. It's so much easier to do with people around me who I adore. Leigh, you are incredible.
In the last five years, I've met some of the most dedicated, loving people in the world, nurses, doctors and therapists who specialize in pediatrics. Kayla's nursing agency, Action Home Nursing, has the most dedicated staff ever. I called the on-call nurse, Roxanne, tonight with some questions about Kayla's pulse oxymetry readings. After discussing Kayla's situation, she took the time to stop and ask how I'm doing and to send a giant hug through the phone. The employees there, Yolanda, Roxanne, Terry, Karen and so many others have also have become family and have supported me through so many life changes over the last 5 years.
I think about how lucky I am to be able to have a job where I can help people and impact their lives, even if it's in a small way. My work at the Myotonic Dystrophy Foundation is incredibly rewarding and helps me to continue to make sense of the craziness that the last 5 years has brought into my life.
I think about how much Kayla's language has taken off in the last year. Kayla is talking so much now and sometimes as I sit and listen to her I think about how lucky I am to be able to have a simple two-way conversation with her. I know that I need to treasure these moments as they may slip away someday. I feel blessed that Kayla is so funny and incredibly gentle and sweet. She melts my heart at least a few times every day.
Well, it's past 3:00 am and I know if I don't get some sleep, tomorrow is going to be difficult. I'm putting the padded locks back on the door and hope that I don't come back to this place for a visit anytime in the near future.