This letter is a little different. I thought I might share how CDH affects other members of the family, the unsung heroes, and victims.
I have already shared Sean's story, and how blessed we are to still have him in our family after 18+ years of a very complicated life. We also have two other boys, both older than Sean. One is 21 years old, the other 32. All 3 are from one marriage, and we have stayed together throughout... Something we don't take for granted, since we know many families fall apart when dealing with CDH and other added medical issues.
Our oldest son was an only child for several years as I had multiple miscarriages, so it was a big change for him just to have 2 brothers within 2 1/2 yrs of each other. We tried hard to give him the attention he needed, but with mom at the hospital so much, and dad needing to work (he worked from home most of the time), and keep track of the little one at home it wasn't easy. Sadly as he got older he made poor choices, and got in with some bad crowds, has had some jail time and is currently in prison. He wants to turn his life around, and is trying to make some better choices, only time will tell if he can follow through. He knows we are here and we love him, but will not enable his poor choices either.
Our 21 yr old has had a few health crisis of his own in the last few years. He has been an amazing big brother to Sean, loving and caring, helpful with some of the easier medical procedures (holding his hands when I did dressing changes, adding food to his feed bag, etc), and great at distraction when in the hospital. While his health issues have been difficult, he has come through them with dignity and as he moves on we could not be more proud of him. He has learned compassion and has a passion for special needs and life, in particular life of the unborn. Truly a special young man.
My mother in law lived with us for 4 years as she battled cancer, so not
only did she see what we dealt with in our life with CDH first hand,
but we were able to minister to her first hand as well. It was a
special time for our family, filled with love, and heartache, but not
something I would change. She and Sean shared a bond that no one else
can truly understand... They both "ate" with a tube, had pain, way too
many doctor appointments, and had to rely on others to take care of
their needs. Precious memories indeed.And life goes on. It changes. Our view of what makes a family changes, as many members of our "family" are not blood, but those who care for us and our children. The therapists who take their lunch hour or skip dinner to come visit in the hospital to cheer up a little boy who misses them. Who think of him while on their own family vacation and find a gift they think he will like. The friends across the country who pray for each other and keep track of special dates, events in each other's lives. And who love each other even when we haven't even met in person. That CDH bond is strong.... We are a family.
Thank you for reading and for caring, and for any help you can give,
Heidi Forney
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