Coping in Caregiving

Our entry into the world of special needs parenting was sudden. We had experienced the occasional ear infection, chicken pox, broken bone, bronchitis, etc., but serious illness had never been a part of either my husband’s life nor mine. In fact, I was brought up in a “non-medical” household (in which we prayed, rather than taking medicine or going to the doctor). Our kids had each vomited once or twice in their lifetime. We were blissfully ignorant of what it was like to care for a critically ill child.

When Katie became ill in the autumn of her 6th grade school year, we were not prepared to move into the hospital full-time, but that is what we did. We were even less prepared to be discharged to Ronald McDonald House with all of Katie’s post-chemotherapy needs, knowing that she had a large tumor in her abdomen (encasing her kidney, adrenal gland, in a lobe of her liver, filling her inferior vena cava and entering her heart). We had been told that she could die at any time from this tumor. To be discharged to Ronald McDonald House meant more togetherness, a more comfortable environment for the four of us, but it also meant a frightening degree of responsibility for Katie’s physical well-being, when she was very fragile indeed. We knew NOTHING about how to prepare and give injections, maintain a PICC line, maintain the nasal-gastric tube feeds and pump, treat severe nausea…but we learned, quickly.

My way of coping was a little bit OCD and artistic, as I am. I began with a small spiral-bound notebook in which I wrote down every medication as it was given, her temperature 2x a day, how many cans of formula she took in - how much she lost if she was sick - and the time when each thing occurred. I made a “map” of the medications and tools needed for morning and evening. I created a color-coded system for this, as well, and later, I used Microsoft Outlook to track and record the more complex matters that arose. Temperature, line flushing syringes, injections (2 or 3 per day, depending upon the chemotherapy cycle), antibiotics, anti-nausea meds, liquid nutrition – we were taught by the best professionals to use and administer these, and we did it all.

At first, I strongly resisted this role of home health care nurse. I felt that Katie was sick enough to deserve a professional caregiver. We even called an agency and interviewed one. But the important thing – which surprised us greatly - was that Katie preferred our non-professional, sometimes bumbling, care-giving to that given by anyone else. Even when she was an inpatient in the hospital, she preferred to have her dad give her injections, rather than a nurse! Her dad, who used to become faint at seeing his own blood drawn, became the man who gave Katie her shots. I was the one who drew them up, prepared the ice bag (to numb the spot), sterilized her skin, held her hands for comfort while the shot was given, and put on the band-aid afterward. We shared all of the care-giving responsibilities, becoming a sort of relay-medical-team, and it worked for us, as a family.

When Katie relapsed and needed hospice care, we learned more. We were able to take care of her, here at home; she never had to go back to the hospital, but was able to stay in her own familiar house, sleep in her own bed, with all of her favorite things around her. She had us, her family and friends, and our cats with her. She passed away peacefully in her room, with me, her dad and her brother by her side.

Katie was sick for 10 months before she passed away. Our time as parents of a child with special needs was relatively short; our "special need" now is grief. Some of you have been taking care of a child with special needs for many years, and you know more about this calling than I ever will. I can only try to imagine how tiring, how discouraging, and how frustrating it may be on some days, with insurance issues, medical issues, fatigue, sadness, the hopes and dreams that are not coming to fruition, the need for respite care. You are doing a great work, every single day that you get up, advocate and care for your child, go to bed, and then get up and do it again.

I want to salute you for the job that you do every day. You are giving your child love, tenderness and comfort EVERY time you give a medication, a feeding, a shot, or hold her hand while it happens - every time you make a phone call to find the right treatment, doctor, therapy or the best school placement for him. Every single act of caring translates into love. The memory of giving that loving care to Katie during her illness is precious to me now. And love is the best medicine we have to offer each other.

Blessings to you and your children!

You can also read this post at Hopeful Parents.