Recently a friend reached out to me, and wanted to know if I would be interested in sharing about how Von’s illness and treatment effects our marriage. She thought it might be helpful for people following to know how we deal with the stress. Before I even considered writing about it, I spoke with my husband. I try to touch base with him about most everything I share because he is an active participate in Von’s care, therapy and life. We are a team, and this fight is ours not just mine. He thought it was a great idea.
When Von was diagnosed 3 years ago, a social worker at Children’s Hospital sat us down. She told us the disease Von was diagnosed with was very serious. She said illnesses as great as these will do two thing to a family; they will bring them together or rip them apart. In that moment, she looked at us and recommended we make a choice now to either remain united or we will become divided. Todd and I talked a lot during those early days about what we wanted for Von and our family. I grew up with a united family and parents that have been married for 47 years. While Todd’s upbringing was different, his parents were still together until his mom passed away. We knew the importance of stability and what that would give Von.
Early on I believe we were in survival mode. We didn’t do a lot of talking about what was going on at all. It was basically just surviving from one crisis to the next. Von was sick a lot in the first 2 years of his life. We spent a lot of time at the doctor, at the hospital and urgent care. It took a long time to sort through the mounding diagnosis we received, and both of us handled the news very differently. I am an extrovert and a communicator, and my husband is an introvert and a thinker. We process things very differently. This can lead to a lot of trouble because when I want to talk, he isn’t always ready to speak. Over the 7 years we have been together, I have learned to try my best to wait to have the hard conversations. A lot of time, I need to bring things up several times before he is ready to face the issue. I respect this about him because when he is ready to speak, he is always very thoughtful in his words and is considerate to me.
I’m impulsive, explosive and at times I speak before I even have time to think. Having a husband that is a thinker, reflective and thoughtful enables me to slow down and refocus my energy. He has taught me how to think before I speak, and while I’m still working on it, he has been my cheerleader in helping me be better at handling my responses. I think with any criss, the key is communication and having the same goals and wants with your life. We may not handle the situation the same, but we both want Von to be healthy and we want our marriage to be healthy for Von. This means we also need to take time for our marriage.
In the first three years, we did most of the care on our own. Von had a nanny to watch him during the day, but we managed all his doctors, medications, therapy, and state services. The magnitude of that responsibility took a toll on me and our marriage. We had a hard time balancing full time jobs, marriage, being parents and the management of multiple diseases that could kill our child. We sought out a few things to assist us in this area. The first thing we did is we found a church. We knew we needed support not only from God but from a church Family. There is no better place to seek support than from those that are on the same faith journey you are on. We hit the jack pot with our church. Our pastor and his family have been tremendous in helping us connect with other families. Other families found us online through our web page, and they wanted to know how to help us. We have people constantly praying for us and offering to help us, and our load became a whole lot more manageable. God has been good to us in what he’s guided us to over the years, and I am grateful he called us to our church. We also pray together, read the bible together and talk about faith and our journey a lot. This ability to know that God has a plan for us, and will help us reach this plan enables us to keep on going.
I realized also to maintain our marriage that we needed more help at home. I was drowning in my responsibilities. There were days I would wake up and not recognize my face, and had little to no enjoyment in my day. Everything I did was a task oriented at helping my son survive and thrive. It sucked the life and happiness out of my heart. Todd and I knew we needed help. We dug deep and contacted the state and requested a nursing evaluation. Welcoming home care nurses in to our home was a really hard decision. When you have nurses, you definitely give up a lot of privacy in your home. You never are truly alone as a family. It’s a blessing and at times very hard. However, it’s given us time to go for dinner at least once a week and talk. We can leave Von in the care of his loving nurses, and we can grab dinner together as a couple. This has enabled us to reconnect as a couple. We laugh, smile and have a lot more fun together. It’s amazing how just 1 hour away from Von a week can recharge and reset us for the next week.
I’m not huge in to giving advice because I don’t feel it’s my place to judge or solicit unwanted rhetoric to anyone that doesn’t want it. The only thing I would suggest to anyone struggling is to make sure you aren’t afraid to have the tough conversations with your partner or spouse. Try to find a way to get on the same page and develop the same goals. Work on your relationship every single day, and certainly do not be afraid to ask for help. No one expects us to be everything to everyone. The best thing I feel I can do as a parent and a wife is to know my limits. Knowing my limits, and Todd understanding his limits, has enabled us as partners and parents to stay strong and stay together.