HOSPICE: Not what you think it means!
For over two years now, we have been living with the reality that our sweet, precious little boy will not live long enough to get his second set of teeth; double digit birthday cakes; or even kindergarten pictures. In late Spring we will celebrate his fourth birthday and everyday the realization that he is declining is slapping us in the face. You see, when the diagnosis of Leukodystrophy is given to the family, since all the family is affected, you reset your priorities. Comfort, smiles, laughter and downright silliness are the things that we pack in the day. We know more about medications and comfort measures, than first year med students. There is an unspoken routine that is followed by everyone involved in his care. The complexity of Stephen's care is not unique for other Leukodystrophy families, but we are one of the exclusive club that watches milestones slip away and in their place come feeding tubes, communication systems, constant monitoring of respiratory and digestive systems, as well as the normal daily care of a toddler who depends on someone for everything. Anyone can wonder how we manage and that is the purpose of this article. I would like to point out that NO ONE could be on this journey alone. Without intelligent, compassionate support, Stephen would have already earned his Angel wings. That intelligent, compassionate support for our family is Hospice of South Texas.
Hospice of South Texas has been taking care of our whole family since last fall. The day that my daughter concluded that school was too energy draining for Stephen, was the day that she enrolled him in the Hospice of South Texas program. We had believed that a person had to have only a short time to live, in order to receive services, but we were wrong. The law has changed to include pediatric patients without any time constraints. (Even though I had been trained as a volunteer years ago, this fact was something I wasn't familiar with, because after all, who wants to think of pediatric hospice services? )
Admittedly, in the beginning we cried a lot, because the mortality of the disease is quite breath-taking. We were also a bit overwhelmed with all the "new" people in our lives. It was difficult to keep everyone's names straight, and jokes were made about certain people, like, "Oh, yeah, that's the nurse we like," when in fact, we absolutely adored all the nurses. All the nurses are unique in their own ways, with a very important factor that ran through each caregiver; each one kept our family's best interest in the forefront of their hearts. We have always wanted Stephen to have as much comfort and laughter that is possible.
Some situations have called for house calls from the doctor and medication was adjusted. These were very scary times, because the little guy seemed to be so miserable and slipping away in leaps and bounds. No heroic measures were done, just a tweak of medication, more respiratory activity (nebulizer and chest repercussions) brought back happy days for Stephen.
Since Hospice of South Texas has been in our lives, other life events have added stressors to our already complex situation and our support staff have stepped up to the new challenges laid before us. My Heart (daughter) and her husband wanted to have a baby in their marriage, and everything was wonderful during the pregnancy. We found out that there would be another little boy in the household and we breathed a sigh of relief, since "we know how to handle boys." Everything went along as planned until the actual day of delivery. When my precious, brave daughter was in labor upstairs in the hospital, I was downstairs getting a biopsy of a tumor in my breast. Before our new little guy was home from the hospital, I received the diagnosis of breast cancer.
Breast cancer, which has been attacked through surgery, chemo and medication, will not define me, but let me tell you, it has surely knocked the wind out of my ole sails. In this part of the journey our Hospice support staff have gathered even tighter around us to make sure that we get what we need to have quality of life. Food has been brought, rides to the doctors have been given, hugs have been shared, shoulders to cry on have been offered, jokes have been exchanged and the many burdens have been shouldered by our friends at Hospice of South Texas. Rocking new babies, holding Stephen, picking him up and entertaining him are "chores" that I have learned to share with these marvelous people, because when I am not able, these boys deserve to have their needs attended to with the love and devotion, that is the hallmark of Hospice of South Texas.