Editor’s Note: The International Association of CDKL5 Research began publishing a column called Poppy’s Corner in their newsletter. We are proud to say that we are writing it.
This is the maiden voyage of Emily, Haley and Poppy writing for an organization that is dear to our heart. I find it requires a change of focus. I find that I would like to give voice not only for ourselves but for the whole CDKL5 family and all families who care for loved ones with complex needs.
Our blog Emily Haley and Poppy began painting with a wide brush. I tore into matters of the spirit as well as matters of public policy. I found out soon that such a wide brush was cumbersome to wield. I settled on the issues of the spirit. I found that as I wrote of such things my spirit was lifted. Our readership, albeit fairly small, has spread to every continent and almost forty countries. And the comments we receive lighten our load even more.
The comments reveal universality about our underlying feelings regarding what we do. However, not everyone gets to express those thoughts and feelings as I do. I want this column to celebrate who we are by a continuous examination of what we do and how we react. Generally speaking we fall into a broad category of caretakers, who, in their many legions are universally not celebrated. For many caregivers, it is a transitory. It begins with the end of life decline of a loved one, and ends with their passing. I was a caretaker for both my parents as they entered their declining years. Now, I am a grandparent and caregiver for my Haley (CDKL5) and Emily (short bowel syndrome). They were celebrated at birth, but very soon thereafter we entered an extremely long and agonizing period of mourning for ourselves and Haley as intractable epilepsy and absence of protein to sustain normal synaptic function ravaged our expectations of normalcy for her. And in the birth of Emily, fates ugly hand reached out at two days old; it left her with less than 10 centimeters of small intestines, and gave her a permanent IV line into her chest, feeding tube to her stomach and an ostomy bag. In effect we were crushed by our expectations. We expected the perfection of new born birth. It was stolen from us. When I cared for my parents there were no expectations such as those attendant to birth only the reality that attends to a walk with a loved one to their final destination. For those who care for children with complex needs grief begins at the beginning of the journey and may linger.
A number of years ago, while on a long bike ride in Rensselaer County, New York, I came upon a grave yard of long ago. As I approached the weathered stones I was immediately overwhelmed by the hardship endured by these long ago settlers. The stones were the last sign of a hardy group of Northern Europeans who struggled just to get by childbirth. As I rode away I realized that in a few short generations our expectation of life has changed drastically. Those who care for children with complex needs share equally in courage and strength with those who not long ago preceded us. In some sense we surpass them in strength and courage. Our forebears who went before us almost always knew the risks before them. It takes a special strength to overcome the unexpected. And in overcoming there are special rewards.
I have found that my expectations often dictate whether I regret or rejoice my station in life. I hope it’s evident from our blog that I have found that this part of my life is one of rejoicing. Although a mystery to me all my life, this is what I wanted to be, Poppy. I could live life over a million times and still be surprised about this ending. Kathryn, President of our CDKL5 Foundation pointed out to me that I seem to have fun doing it. Strange as it may seem I do. How is it that this can be period of rejoicing as opposed to one of regret?
The rewards garnered from hardship have surrounded us all our lives. I am product of my grandmother’s care who raised me as my mother worked and my father fought a war. It is estimated that roughly 30% of our population, at any given time, is intensely involved in caring of a loved one. With those odds most of us are now, have been or will find ourselves as caregiver sooner or later.
Having found ourselves here we must define what it is that makes us celebrate what our children have taught us. Why is that we rejoice rather than regret? What is it that we have learned about the meaning of life from our walk with our children? First and foremost it can be mind and body numbing difficult. Then again all things great come with enormous effort. Most who achieve greatness watch it slip away, but fortunately for us the communion with our loved ones lasts forever.
So it is that I will end this column with quotes from two greats: Joseph Campbell, once said of the secret of life: “We must let go of the life we have planned, so as to accept the one that is waiting for us”; and Shakespeare, who wrote: “Some are born great, some achieve greatness, and some have greatness thrust upon them”.