I arrived home this evening to find a letter from the principal at my daughters’ school. It opened by informing me that Sabrina (my 5th-grader) had been missing a lot of school recently, proceeded to explain that her absences would henceforth require a doctor’s note, and closed with a threat to file a petition in county court against myself and my ex-husband if Sabrina missed any more school.
Bring it on, sister.
Sabrina was born 5 1/2 weeks prematurely, before her lungs were fully formed. Do you know what happens to humans when their lungs don’t fully form? They have trouble breathing, and their immune systems are compromised because our lungs provide that necessary oxygen stuff that keeps us healthy… and… well, alive. She spent the first three years of her life sick almost non-stop and I hauled her from doctor to doctor trying to find out what what wrong with my baby. I fought with doctor after doctor who tried to tell me that she “just had a cold.” We finally got a diagnosis — an unusual form of asthma known as “cough-variant asthma.” Most likely not life-threatening in her case, but complications resulting from it could be. And it was definitely compromising her ability to fight off even the smallest cold. Thank goodness we live an hour from the best respiratory hospital in the country; we were so relieved when we finally got the diagnosis. Now, we thought, she’ll finally be okay.
Boy, were we wrong.
Turns out the diagnosis was the easy part. Developing an effective treatment plan proved to be much harder.
I can’t even remember how many specialists I saw, how many tests she was subjected to, how many alternative approaches we tried to no avail. Sabrina and I met with doctors up and down the Front Range of Colorado, from Denver to Fort Collins, looking for solutions. From October until May each year, she was sick on average of 5-7 days a month. She did so many courses of steroids, the doctors warned us she could suffer stunted growth because of them. On too many nights, I bundled her up and raced off the ER, to sit by her bed while they hooked her up to machines and pumped her body full of medicines, while she looked terrified and I choked back tears.
Her poor little body couldn’t fight off anything; every cold, every virus left her incredibly sick. Almost every child gets the rotavirus at some point or other; Sabrina got it and landed in the hospital for three days, hooked up to all variety of monitors and IVs. The worst was an illness that no one was able to identify. Our hospital stay that time was four days, and the senior national expert on communicable diseases was brought in examine her after specialist after specialist and test after test brought us no closer to an answer. SARS? No. H1N1? Nope. Cystic Fibrosis. Thank God, no. The virus — whatever it was — eventually went away, but not before it ravaged her small body.
When she was 3 1/2, I quit a job I loved, in part because I was missing so much work due to her illnesses. Bryce and I decided that it was time to finally figure out her health. I began keeping a binder of everything I could find out about her kind of asthma and what each of the doctors had said. Gradually, I formed a team of doctors around Sabrina and coordinated her care in a manner that finally began to show some outcomes.
We were lucky in some regards. She had wonderful doctors devoted to her. Sabrina is the kind of child that hugs everyone, including the doctors who had just poked and prodded and hurt her. I remember one evening, when she was in the hospital with the mysterious virus, her fever raging and her body expelling liquids almost faster than the machines could pump them into her. It was 3:00AM and I was awake, worried about her, checking her breathing and sponging her fiery body. I went out into the hallway to fight back the tears and discovered her primary care doctor, off-duty, pouring through Sabrina’s chart with a stack of medical journals and references spread out around her, desperately searching for something the experts had missed. I suppose I should have been more frightened, seeing her like that, but I was so touched by her dedication that I actually felt better. How could Sabrina not get well when so many people were working so hard for her?
It has been a long, long road. Every year the doctors adjust her medications, and we now combine traditional Western medicines with Eastern herbal remedies, acupuncture, and chiropractic adjustments to manage her illness. By the time she was eight-years-old, Sabrina had had two surgeries; each offered some relief but she still struggles. Slowly — very, very slowly — her incidents have lessened in frequency, but not intensity. Her doctors have speculated that she will likely outgrow her asthma eventually, and that is our greatest hope. But every time I think we’ve made progress down that road, we have a month like this February, and I wonder if we have lost all the ground we gained….
When people first meet Sabrina, they usually assume that we must be exaggerating her health problems. Contrary to the doctors’ early concerns, she is tall for her age — about 5’1″ at 11-years-old — all legs and arms and long chestnut hair and pink cheeks with a smattering of freckles. But once someone has seen one of her attacks, or seen her when she is sick during one of those periods, they realize what she is fighting. Her asthma attacks are not like the regular wheezing attacks. They start slowly, with a dry cough and escalate over a period of hours. When they are in full force, they can be very frightening to someone who has never seen one. The first time my mom witnessed one, she became nearly hysterical and I had to make her leave the room. Sabrina’s preschool teachers overcame their initial shock and became experts at trying to calm her down and help her with her medicines. Indeed, throughout her school career, she has been blessed with caring and compassionate teachers who worked with us to keep her in school and learning whenever possible. All the educators and administrators that we’ve had the pleasure to work with have collaborated with us and shown Sabrina incredible kindness.
Tomorrow morning, Bryce and I will go into the principal’s office. I am taking Sabrina’s medical binder, with the names of the nine specialists involved in care written in Sharpie on the front. I will ask the principal which doctor she would like a note from. I will show her the peak flow meter — the device that alerts us to when Sabrina cannot breathe. I will tell her how nice it would have been to have received a call from the school asking us if Sabrina was okay, rather than a letter implying that we are poor parents because we are “in violation of district attendance policy.” I will explain to her that the next time she threatens me with a lawsuit over my daughter’s care, she had better do her research. Because if there is one thing in this world that I am sure of, it is that I have been a good mother to Sabrina. I have cried more tears over her and worried more over her and held her hand through more scary times than that principal can even imagine.
But she’ll find out. Tomorrow morning, she’ll find out.
Wish her luck. Because I won’t need it.
Blogger’s Note: It took 9 minutes the following morning to go from a rebuff from the principal (“I’m sorry, but you’ll have to make an appointment.” “Sure. That’s fine. Which of the 9 doctors on her medical care team would you like to attend that appointment?”), to an apology, to a commitment to work with us to develop a district medical plan for her on-going care. After we left, Bryce told me I’d handled it well and that he was glad it was her I was angry with and not him. 😀