Alexis at 40

Who knew that a daughter born with such multiple challenges and crippling epilepsy could live this long – certainly not the many specialists we have contacted through the years.  Who knew that by taking such good care of her we would continue to enjoy the pleasure of her company on a daily basis in our old age?  Certainly not us when we undertook this commitment to her at the time of her diagnosis at 9 months of age.

Did we do the right thing by wrapping our lives around her?  Did our other children suffer too much?  Did we give up too much:  career-wise, socially, personally?  As I conclude in the memoir I have just finished, that is a question that can never be answered.  One thing we do know for sure:  she would not have lasted otherwise.  That fact has been confirmed by multiple professional and personal sources – and that is certainly no judgment on others who did not choose to keep a damaged child at home forever.  Each case is unique and each set of circumstances is unique.  In our case we were both lucky and unlucky at the same time.

Lucky:  we had enough money and enough job flexibility.  We live in Edmonton, Alberta and from the time Alexis was school age we have always received some financial support to access the help we needed at home, more as she grew older, translating every year into a few more hours each week of freedom for us from the constant demands of her care.

Unlucky:  I know a lot of people with profound disabilities but none who suddenly stop breathing for no apparent reason and require that oxygen be forced into their lungs to keep them going.  That is not the same as “being on oxygen”.  Alexis literally requires a pump to force it in.  Furthermore she does not announce this in any way except by suddenly being very quiet – easy to overlook, and requiring from us or her care providers constant observation and vigilance as a result.

Also unlucky:  Frequent aspiration of food or drink or even saliva – again requiring our close attention and the development of various techniques and devices to keep her going.

Yet, when we look back on our lives they seem to us to have been satisfying and worthwhile for the most part.  The bigger question is what about her life:  Has it been worthwhile?  Does she get enough out of it to make it worth the struggle?   Her sudden smiles and clear appreciation of certain activities, foods, family moments, tell us that she does get something positive out of her life.  Whether or not it is enough to make up for all the negative parts, that we cannot know.