Blake and I met in high school. When I went to his high school graduation, I met his mom and dad. I made a comment about how tall he was while his parents were so short. That’s when I learned that his dad was there with his step-mom; Blake’s own mother died when he was eight years old from complications of Marfan syndrome.
Although Blake’s mother had been diagnosed with Marfan and was the first recipient of the Starr Edwards valve, Blake was never formally diagnosed until he was 20 (without the diagnosis, he had played football and basketball until his junior year in high school). We married and had two children. Our daughter, Alicen, was born first and did not have signs of Marfan syndrome. Our son, Andy, was born three years later; we knew the minute they handed him to me that he had Marfan because he had those subtle signs that we knew to look for.
Blake had his first surgery at age 33 when he had an operation to repair an aneurysm in his descending aorta. There were a few complications and he was in the hospital for a month. With my medical knowledge as a result of my work as a medical transcriptionist and my level headedness, I helped with all of his care, advocated for him when he was unable to speak, and could make sense of what the doctors were saying.
Blake rebounded and went back to work a couple of months later. We then learned about The Marfan Foundation and, in 1993, attended our first conference. That was where our son, Andy, was formally diagnosed.
Blake was a quiet, soft soul. He didn’t feel he needed to go back to the conference. I wanted to continue to go conference to be with other spouses, to find out the new medical information, and connect with others. We live in North Dakota and, at that time, I didn’t know of anyone else here with Marfan. I knew there had to be people here but I just didn’t know how to find them.
Blake went on to have multiple surgeries, but did not live his life being defined by his Marfan diagnosis. He did what he wanted and made the adjustments he needed to be able to do them. He took his kids to the mountains every year for a week-long hike. We always shared with our kids each time we made a decision related to Marfan – whether it was about surgery or the difficulties we would be facing.
We had a very special Christmas celebration in 2006 because Blake’s aortic arch had a large aneurysm and we felt it may be the last Christmas we would be spending together. Blake had his final two surgeries in April of 2007, in Peoria, IL. They repaired the arch, but Blake was quite sick. There were complications and more surgeries, which left Black partially paralyzed. After the surgeries, his care could be done at our home hospital in Bismarck, ND, so Blake was flown home and spent the last four weeks of his life in a Bismarck hospital.
During those last four weeks in the hospital our daughter was finishing the plans for her wedding, which was scheduled for May 25, 2007. Blake passed away on May 21. The funeral was held on May 23, Alicen’s rehearsal dinner was on May 24, and her wedding took place as planned on May 25. You hear people say, “That was the way he would have wanted it.” And that was true in this case.
Blake had several sayings that so spoke of his personality. He’d say “don’t do it for me” and “don’t be stupid.” (The last one in a kind way.) He had told our daughter not to change the date of her wedding just for him, that she should have it the date she truly wanted. She didn’t listen to him, of course, and had moved her wedding date from August of 2007 to May of 2007. We knew if we didn’t follow through with the May date, we would have heard a resounding boom from heaven saying, “don’t be stupid.”
Blake was a gentle, loving, caring soul who is missed dearly by his family and friends. He is always in our hearts.
After Blake died, I met a woman from North Dakota whose 13-year-old daughter had Marfan (first in her family). We talked about getting a community group going in our state. I contacted the Foundation and we started our group. Our first meeting had seven people; then it expanded by a few people here and there. We became a Chapter in 2010.
In 2013, I met Tracy Stoppelmoor, who was working at the local hospital that held Grand Rounds in conjunction with our chapter’s symposium. Tracy and I have worked together since then to make this group a stronger, growing network. We also have chapter members in the western part of the state who lost their son from undiagnosed Marfan at age 18; they are instrumental in fundraising in that part of the state and they do a lot of awareness and education there as well.
Tracy and I are energized after the 2016 annual conference in Rochester, MN. This was truly the best conference I have attended. We came away enthusiastic and revved up to do more. And I continue to be committed to attending the annual conference each year. Although Blake is gone, I still feel the need to connect with other spouses for support and be with others who know what I’ve been through and continue to go through with my son.
Many people are unable to attend the annual conference to get information and create connections the way Selma has done. Our conference scholarships make it possible for about 100 people each year to attend. We hope to provide even more scholarships next year. Your donations can make this a reality. Please donate today.