Originally Published on www.brfcf.org on October 25, 2012
The alarm clock rings, it is a distant sound in my vivid dream. I begin to rise into consciousness. It seems unfathomable that it is time to get up…I just went to sleep. The fall and winter months are kryptonite for CF. No matter how sanitized and isolated you reluctantly allow your child to become, colds are inevitable. Those simple colds become coughing fits for the child and night time panic attacks for the parents. Three AM treatments are commonplace during the cold season — they make the cough settle but the mind race. How can we maintain all the balance during the day when our nights are so unbalanced and full of stress?
I found myself in Maylie’s school meetings, trying to explain the hurdles that we have to jump through as everyone else sleeps soundly and nighttime disturbances are just the beginning.
Once the alarm clock brings me to the highest level of consciousness that I will be obtaining on such little sleep, I run downstairs to lay out the morning vitamins and antibiotics. I put the compressor on the stool, grab the latest Junie B. Jones book, the fuzzy blanket, hypersal, sputum cup, acapella, and cayston. I run back upstairs wake Maylie from the first peaceful sleep that she had all night and shuffle her downstairs in the dark to start her day. The struggle begins. Treatment is difficult, compliance is low and “Mom” is not the hero in this story. We finish treatment to move on to our next battle–breakfast. Food does not sound good after the respiratory marathon that May just endured. I accept a deal of drinking a glass of half and half–my choices are slim at this point. I have the 5% BMI cloud hanging over my head. The girls grab their scooters as I throw May’s lunch in her bag and we run to school. I hear the bell ringing a block away. I give May a quick kiss goodbye as she runs in the door. I am left to wonder how I could make it more smooth tomorrow.
I walk home feeling the sadness of the morning overtake me. Why is everything always a rush? Why do we not have more moments to really relax and enjoy each other? I spent the only hour and a half that I have with my daughter before school being her nurse, dietician, and respiratory therapist. I just want to be her mom.
I try to imagine what it would be like to homeschool. I always imagined homeschooling my kids, it seemed connected and involved, the way a parent/child relationship should be — the part I often feel like I miss out on being a CF mom. As soon as May was diagnosed at 3, I felt like it was verboten to even consider homeschooling. I would be the “bubble mom” and I would be asking my daughter(s) to be social outcasts. While none of this is true, we all have to admit that, in the CF community, homeschooling has a negative connotation. It does not hold the same meaning and justification as it does for kids without CF. It is simply one more attempt toward complete isolation from viruses or bacteria.
I bring the stroller when I pick Maylie up from school. It is her “on” month for Cayston and we walk downtown while she does her antibiotics. We stop by the park on the way home — airway clearance in disguise. It is almost five o’clock when we arrive home. Time to start dinner and treatment. She sets up all of her colors and coloring books on the counter as I set up her nebs and PEP. We spend the next 45 minutes working together to “take deep breaths,” and “huff,” over and over and over. It is a script that is so heavily embedded in my head that I don’t even think about it anymore, I am like Pavlov’s dog. We finish nebs just in time for dinner. We finish dinner just in time for Cayston and we finish Cayston just in time for bed. We give our hugs and our kisses and I go to bed with the same heavy heart I did last night and the night before. I ache for our time to be more valuable, more connected. I can count moments on my hand per day that our interactions were not CF related. I want more than that. So, despite the taboo, I start to revisit the idea of homeschooling.
The first week of homeschooling I questioned myself endlessly. Did I do this for the right reasons? Did I take on yet another battle to fight with her– treatment, pills, feeding tube and now school? Will she suffer socially? These concerns, while all valid were moot by the end of the week.
Last year, Maylie missed 76 days of school. Kindergarten was Maylie’s first “consistent” school experience and she had the most unbelievably supportive classroom. I was in awe of how understanding and forgiving they were of her frequent inability to control her GI system as well as her lack of awareness of the how “uncouth” it is to spit mucus on the playground. I never once saw a child make fun the many hurdles that CF places in front of our children, I saw a genuine spirit of sweet acceptance. Leaving Bozeman and this school was a difficult choice and had we stayed my consideration for homeschooling may have turned out differently.
I believe in the public and private school systems, I love the feeling of community that is formed in a classroom, but I also saw the valuable moments that I had with May just slipping away when I sent her off to school. We are now a mere two months into our first year of homeschooling. We awake on May’s schedule when she is sick, allowing her body more time to heal. We have a peaceful and productive treatment and a relaxing breakfast, all of which foster a new relationship for us. We have circle time, language arts, science, math, music, arts & crafts, social studies and relevant fieldtrips. After seemingly endless research on home school programs, I chose a program that is through an accredited private school, so the syllabus, books, crafts, etcetera are all pre-developed for us, her assignments are sent to her teacher and she is graded on her projects monthly. Homeschooling has allowed us to have a lot of flexibility, but I know that she is also receiving a really reputable education here at home. While homeschooling adds more responsibility, the additions of time, memories and overall contentment for us as a family override those initial hesitations.