In Sickness and In Health
This week was my husband's birthday and we all had a chance to celebrate him- for all he is to us and all he brings to our life daily. I think so often caregivers and especially spouses are forgotten in this rare disease life. Things that happen to me or our son impact him immensely but because he is not the patient the details of his own experience are often left unheard or known by many.
It is not my husband's style to like attention drawn to himself but his Birthday seemed like an appropriate time to share why I feel blessed daily to have him by my side. When my husband and I met we were recent graduates living in NYC with our friends, working of course, but not jobs that ever went past 5pm and our evenings were left "playing" in New York City. Lots of darts, favorite dive bars, baseball games and concerts and endless dinners and drinks with friends were how we spent our time in the early years of dating. My health at the time was stable. I ate many foods still, though I did not eat in restaurants (I still went to them), and it was my version of normal then. I carried food everywhere with me and even sometimes sulfite-free wine in a water bottle in my purse.
By the time we were living together and engaged I began losing more and more foods, reacting more and more and realizing that something was wrong. He accompanied me to the ER many times, helped me calm down and wait for medications to work as we left dinners that soon even the air I was breathing made me react to and helped track down the dwindling list of foods I could eat.
Thankfully, none of these changes and worsening health issues made him leave and instead we walked down the aisle already taking precautions at our wedding asking guests to avoid perfumes and planning a menu I could safely be around. With each change or issue that I had arise his life would be modified. No longer are certain foods allowed in our home, personal products like deodorant and shampoos must pass the "smell" test and after attending any large gathering, golfing, or eating in a restaurant his entry to our home requires a shower immediately upon arrival.
And these are just the practical things, this doesn't include covering the middle of night wake ups and early mornings with our son that I was too sleepy from many medications or a reaction to ever be lucid enough to handle or the endless times reactions put me in bed and he was left to care for our son. Nor does it include the many events I could no longer attend with him or that we both had to skip if I was not stable enough to be alone. And of course, there are the many many hours he has spent next to me, as I am shaking and reacting giving me his hand so I can relax just a little more till it resolves.
The way we live and interact with the outside world are forever more dictated by my and our son's rare diseases and my husband accepts it all without hesitation each time. Of course he shares in the disappointment and frustration that comes with each loss or new accommodation we have to make but together we move forward in spite of it. I have after many years gotten over the guilt I have thinking that in some way I have ruined his life, realizing that we all bring "stuff" to any relationship. I am just grateful he has always felt "my stuff" is worth working through and that neither of us let this be what defines our relationship with each other.
Many in the rare disease world lose spouses along the way who are unwilling or unable to step up to the demands placed on them by the illnesses their spouse may live with, when "in sickness and in health" is no longer a vow they will keep. I am grateful that I know this will never be true for me and that my husband and I will continue to navigate this life together-no matter what else is thrown at us. Our dreams for our future may look different than when we first met each other but I know together we will find our way- just as we have always done. So this week and always I celebrate you, my dear husband, for your love, support and laughter always, happy birthday to you!
