As the mother of a child with Wolf-Hirschhorn Syndrome, I experienced most of the emotions possible in parenting Craig over a 25-year period, including shock, sadness, confusion, fear, crisis, overwhelming love, grief, anguish, numbing fatigue, anger, joy, pride–the list goes on and on. When he was three, I wrote the letter to Exceptional Parent Magazine which facilitated the networking of other families, and the start of the 4P- Support Group. As a nurse, I experienced and observed the other side of “patient care” constantly, evoking more emotions of gratitude, dependency, neediness, and disappointment at times with his medical care. When Craig died, I began writing his life story, and I focused heavily on those emotions, because they were so intense in our lives. I have published this memoir, and want to share our family’s journey with others, especially those who are on their own unique pathway with a special needs child. A huge issue for families is balancing the needs of each person, especially the siblings of the child who, by necessity, commands a disproportionate share of the attention and resources. Keeping our marriage alive, and our family “doggedly happy,” as I describe us, was a struggle at times. I include the coping strategies we used to carry us through, with the hope that others can gain strength for all they need to do to help their child reach their full potential, and keep their entire family thriving.
Craig’s book is available through Amazon.com for the paperback or Kindle version (the beginning can be read gratis), and also at OutskirtsPress.com at a lower price, especially for orders over 10 books.
http://www.amazon.com/CRAIG-RICHARDSON-Living-Disabilities-ebook/dp/B005BVVZ70/ref=kinw_dp_ke?ie=UTF8&m=AG56TWVU5XWC2
I would love to hear feedback from anyone who reads Craig’s story, and about your own situation. I also have a blog at http://craigrichardsonalifeworthliving.blogspot.com/ if anyone would like to post something there. You may notice that the title is shorter than the title of the book; a friend highly recommended I add “With Disabilities” to the title, to further define its genre.
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Thanks for sharing, I’m looking forward to reading your memoir and reading about Craig’s life.
My grandbaby is 2 mos old and was diagnosed with wolf hirschhorn syndrome. She has never left the nicu.my son is so lost because of this. I don’t know what to say to him.he’s a military medic and an EMT.I don’t know how to help. I live on Maui and his family on Oahu,here in Hawaii. Any advice. I care so much and feel so helpless. Wintersdiane5@gmail.com.thank you.
My heart goes out to you & them.This is a horrible time for them; they’re essentially in a “holding pattern,” circling around, waiting to land on more solid ground. You didn’t give her current condition, so I would hope she is becoming stable enough for discharge, or at least not having episodes which leave you & them feeling weak (been there…). During these times, my goal was just to get through the day, hoping tomorrow would bring us closer to the way out. But your son & wife are just beginning this journey, & for them, I know it is something like groping in the dark–they want to get to a better place, but don’t know how. There are so many strong feelings they are having, but must suppress just to “get along,”: the feeling of being somewhat powerless to change the situation. In addition, they are coping with the grieving process, as well as the many practical difficulties that the hospitalization of a baby present. It’s a horrible situation for them (& you, b/c as a grandmother, I know now that whatever happens to your child & grandchild hurts you too).
The grieving process takes such a back seat to the everyday, but it is a force that cannot be ignored. The feelings of shock & the disappointment over the loss of the “hoped-for child” are profound, but those feelings are politely ignored by most people because it’s such a private thing. Others may thing they’re used to the idea by now, but no, those feelings linger for years. They can lead to serious depression, as opposed to the expected depression associated with the current situation–I know most people whose baby is hospitalized are saddened & down at that time. So you asked for advice, & I wish I could give you some that would be helpful. Practical ideas? One is for me the necessary chore of writing things down, documenting the sequence of events in the NICU for my baby, because it’s just too hard to remember everything, & those notes are always useful to me later.The medic would be better at writing the notes, but the mom would probably be there more. Dates & times of events (tests, doctor visits, feedings, etc) are most important.
The thing that I view as most important is preserving the relationship of the two parents, so that they can be strong for each other, & just get through this time. Anything that positively strengthens their relationship. You didn’t say if they have other children (both a blessing & additional considerations there), but I would say communication is of utmost important. The problem is that when a couple is stressed, & stressed, & over-stressed, they can become so “shell-shocked” that they slow communication to an “as needed” exchange. Resentments can so quickly build up; as my husband & I heard once: “the antidote to anger is compassion”–realizing that for the other, things are just as difficult & they need to continue to be allies, rather than let their relationship deteriorate to the silent treatment. My recommendation: A daily walk outside in the fresh air for 15-20 minutes, holding hands, talking about their feelings of the moment, sharing honestly despite the fact that there will be tears (that would be “more tears” because I know they’ve shed more tears in the past two months than ever in their lives). In those talks, they can give each other the gift of understanding they each need to continue coping as a couple, till these storm clouds pass, & at least calmer days & bluer skies are here. Please let me know how it goes–my e/m is tombecr@comcast.net.