My child has a genetic disorder called Wolf-Hirschhorn Syndrome. This syndrome, in short detail, causes many cognitive and physical delays. It affects the fourth chromosome. There are many degrees of impairment of all children with the syndrome. Although many have similarities they are truly unique in that no two are the same. So when you have a child with this the great thing is the slate is truly blank; and you can only wait and see what the journey will be as it unfolds.
Grief is an everyday experience. Not feeling it is not avoiding it. It will seep in somewhere. I have been taught this for over 14 years now. We cannot take it away because to experience grief you need to feel it and most importantly “talk it out.” We feel ongoing pain and struggle when we mask our emotions and bury them deep. Talking it out does not have to be with a person. A fond notebook, a walk with nature, and short story writing are all expressive forms. Of course talking with your parents, friends, religious leader, or even favorite teacher can be great outlets for grief experience of life’s disappointments.
Our family had been experiencing a long decline in kidney function for our daughter for over two and a half years. It became an appointment every three months that left me wondering if we would schedule another appointment each visit or perhaps a surgery date. Long ago after having my daughter I stopped trying to write down my six month schedule ahead of time in stone. I learned from the start that each day would be lived. We would not grieve about the next day, only the current one if needed. I try to live each day and at times plan, but do not get hooked on outcomes or plans.
One time we had to cancel our one and only Wolf-Hirschhorn Syndrome National Conference. I was blindsided. We could not get Anna out of the hospital for 29 days. Even though the reason was logical and she needed medical care, it hurt. I could barely look at Facebook photos of the conference.
Then I decided I had to get over myself and realize there is good even in our darkest times. I thought how now I knew how others felt when they were unable to come. I could relate to this now. I could support others in the future who maybe had to stay back or were hospitalized. It really turns real when it happens to you. I decided I would just use this to understand when other families were in the same situation. I also used this to realize that my feelings were real but could be used in more effective ways. In other words, grief turned productive.
I learned on December 6, 2016, that on December 21, 2016, we would be undergoing the long awaited kidney transplant. I used my prior experience to handle knowing we would miss Christmas in our own living room. There would be no family gathering, no warm coffee in mugs with low Christmas music playing, the family in pajamas and my teens up before noon. But what I would have is a daughter who could finally live without extreme lethargy.
I was pleased that I had become a better planner, could handle this huge swift change for the holidays, and had become more organized because of my daughter with special needs. I had most gifts already bought. I’d just move up the date to have my kids around my table, open gifts sooner and then head off to the hospital! I thought of how lucky we were in so many ways: to have a family donor (biological father) and how lucky we were to have great insurance, a short commute to the hospital, a child healthy enough to handle the surgery, not to mention the great surgeon! The traffic load was extremely light as well (being the holidays).
I also thought about all the beautiful decorations I could admire at the hospital for longer. And the best was that every Christmas from here on out would remind us of the best gift ever. We would never appreciate the truly remarkable gift of the holiday and having a healthy daughter if we did not experience a Christmas in Children’s Hospital. The beauty of life is not always seen when we focus on what we don’t have instead of what is right in front of us.
Submitted by Jacqueline Dalzell