A Mother Grieves for Her Son
I just received this affecting letter from a mother about her son. Her precious boy had certain similarities with Damon and her tale moved me deeply. I don’t know how many stories like this are out there but I imagine it’s more than we think.. I invite readers of Immortal Bird to share their unique stories.
The boy’s mother gave me permission to quote her letter but asked that the names be changed so “Joseph” is not his real name and I omitted her name as well. I also obscured a few other names to preserve anonymity.
Dear Mr. Weber,
I wanted to thank you for writing your book about your son’s life. There were so many similarities to our son’s story in your telling of what your family experienced with his illness.
Our son, *Joseph was born with a single ventricle as well. He was born in 1978, when there was very little information that I could even find on his condition. He had a Blaylock-Taussig shunt done at birth, and a Modified Fontan at age 10. At 11, we almost lost him, when he stenosed a couple of the vessel connections that had been done xxx. He was in heart failure and pulmonary edema and we were losing him when his pediatric cardiologist got the FDA to approve an emergency insertion of a stent at xxx. Stents at that point had only been put in pigs and 2 or 3 other humans. *Joseph came out of that so much better. The doctors had never been able to separate his circulation completely, and he always had somewhat compromised oxygen levels all during his teen and twenties.
* Joseph, like your son, loved to act and was in plays, and musicals while in school. He had a dry wit and there were so many family dinners when I would nearly choke to death he was so hilarious! He was a great friend and kept a smile on his face always. He was so incredibly brave. He finished high school, and then went on to University.He graduated with his degree in Economics. He did an internship at the state legislature with our local state senator while in his senior year of college. He loved it, but saw that there was so much that could be done better in government. He decided to go to law school after graduation. xxx had managed the major problems with his heart ever since he was 11, so he went to xxx for school where he could be near those doctors. He graduated from Law School in May of 2007. While studying for the bar in June, he had an arrhythmia in the Law School library. The team there resuscitated him and got him back. He was sent to xxx, but would eventually not survive a redo of his Fontan surgery a couple of week later.
When you said in your book that you lose your sweet son everyday, I know exactly how you feel. I have gone through all the what if’s for the last 4 and a half years. There is not a day that goes by that I do not wish things had turned out differently. We were I guess lucky to have Joseph for almost 29 years, but it doesn’t feel lucky. My husband and I had become good friends with him. It was more than being a parent. He was such a wonderful person. Joseph, had two younger siblings. There were 6 years between Joseph and his sister and nearly 10 between him and his younger brother. Joseph as he got older, became the third parent in many ways to them and they looked up to him so very much.
I wish I could have written a tribute to Joseph, as you have done for your son. I will have to leave that up to his sister or brother. Until you have experienced the nightmare of trying to save your own son, you cannot possibly understand what you had to go through. I understand and my heart breaks for you and your family.