As Chris’ mom, I cannot write my version of the story from one moment. All of the moms out there know that we pretty much all live in the moment or the day that we are in. So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years. Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever. From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”. But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.
I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine.
I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.
Chris began to have headaches around Memorial Day 2008. As June rolled forward, he began to experience double vision. After numerous eye exams with doctors who were not concerned, he continued to work throughout the month. One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school. We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good. When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”
Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning. Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis. The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence. “I have to do what I have to do”. He smiled and said “I’ll see you later “…strength, courage, and determination. He makes me proud that I am his Mom.
After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home. If I did not agree to them, he would have been in the hospital for at least 2 more weeks. Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously. The visiting nurse came to the house the first day to show me how to administer the medication. My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose. The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good. Two weeks became four. Per usual, Chris never complained. He went along with it all.
A Tuesday in August – it was going to be a good day. Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages. Once complete, she initialed and dated the new bandages. That evening we had plans to go to our town green for the weekly concert. It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music. We were going to attempt to do something not medically-related for the first time in 6 weeks. How we were all looking forward to this! But before we could do that we had to take Chris to his scheduled MRI. This was the first MRI done since being released from the hospital. There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him. I signed my name as his guardian to whom questions should be asked. My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI. I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI). I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?” He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.” I’m a pretty calm person, but at that moment I lost it. How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him? I immediately marched back in with Chris only to be told that they were sorry for their mistake. We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port. I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected. Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.
Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life. I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.
One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own. “It’s time Mom, wrap my arm up!” Indeed I did. He loved it and I dreaded it, but this was truly one of the joys of his day! I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies. I feared water would get in. My wrapping routine paid off as I guess I did a good job – no problems! But, who would ever think that I could be a nurse? I’ve always said, “What we will do for our children!”
This was the most difficult period in my life. Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books. I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley. His speech and words came fumbled and slow. When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day. I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.” Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better. But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!” WOW. That was my Chris. So clear, so quick, so witty.
He was definitely coming back.
“While we try to teach our children all about life, our children teach us what life is all about.” Angela Schwindt
Grey Matters 