Marital bliss and raising a child who is medically complex with a disability often seems oxymoronic! Or maybe more like a seesaw ride, up one minute and down the next. Your entire life is turned upside down when you realize you are raising a child with special needs, and that includes your marriage. All of a sudden, the balance is thrown off, and sometimes it feels as if only one of you is trying to ride the seesaw. In reality, you are both trying to ride, but you’re just not on the same seesaw.Bug’s Story
When you plan to have your child, you have expectations of what life will be like after the child arrives. Other than the usual bliss of starting a family--the joys of having a newborn at home, cute little baby toes to kiss and a beautiful baby to snuggle--there are the realities of planning life beyond the arrival and enjoying your new family. In our case, we expected maternity leave and then finding the perfect daycare so I could return to work. Our plan was to keep riding the seesaw together, both working and both participating in childcare, nicely and evenly balanced in a manner that was also fun. We knew there would no doubt be ups and downs, but the part of the plan that was not anticipated was the endless seesaw ride!
The unexpected happened and Bug came almost two months early. He spent a little over a month in the NICU, over a third of my maternity leave. Then came the realization that he was significantly visually impaired. There was the addition of Early Intervention and therapists, and at least two to three days spent every week at Children’s Hospital Boston trying to determine the cause of his blindness.
Ultimately, it was decided that I would stay home with Bug and manage his medical appointments and therapies. The adjustment to being a stay-at-home-Mom, which was never in my plan, was a huge learning curve for me. And then there was also the huge adjustment and impact for our family financially.
There is no question that this was the right decision for Bug, as we spend at least one day a week at Children’s Hospital Boston still. We do outpatient Physical Therapy twice a week and have several therapies through Early Intervention in the home each week, including Occupational Therapy, Speech Therapy, Feeding Therapy, Music Therapy, a Teacher for the Visually Impaired, and a play group at Perkin’s School for the Blind.
Somewhere in this process of focusing on Bug and how to choreograph our lives around him, there was something lost in our marriage. Not love, but an inability to focus on our relationship. I think this happens to any couple who lives within the parameters we do. All of a sudden our life plan went up in smoke. At times, we both have different ideas of how things should be handled. We are at the same playground and both want to ride the seesaw, but have chosen separate seesaws to ride, both refusing to move from our respectively chosen seesaw. We all know you can’t ride a seesaw by yourself, so we both become grounded at times!The Frustrations of Providers
My husband is an amazing father. He is an amazing husband. He IS my counterpart. Where I worry and stress, he is calm. Where I focus on what is wrong medically or physically with our son, he looks past all of that and sees a child he can play with. On the other hand, he stresses financially while I have an attitude that we are doing what needs to be done and it will fall into place. We balance one another out. So, if we are so balanced, one would think we would have no problem riding the same seesaw, right? Our countering one another should make it an easy ride, right? But it isn’t that simple.
My husband works hard. He works a lot of hours so that he can provide for us. I cannot speak for him per se, but he easily gets frustrated when a week comes that he can’t provide as much as is needed, even though it is due to reasons far outside his control. I imagine he often feels he is the provider and the one doing the grunt work without always getting credit for it. He is an amazing provider, and it would not be unusual for him to feel any of these things, like he is doing all of the work while I get to play.
I also see amazing frustration on his part when Bug is hospitalized and he works a long day only to then come to the hospital. He gets a quick visit with Bug and the 10-minute synopsis of what actually took place in 12 hours. Where I have time to take it all in throughout the day, he has to absorb it in 10 minutes, trying to understand what it all means. It doesn’t help that I have a bad habit now of speaking hospital speak…he is constantly saying, ENGLISH PLEASE.
He then goes home to an empty house and an empty bed and tosses and turns, not fully understanding what I have filled his brain with. He tries to sleep before another long and busy workday before doing it all again the next day. I know on these weeks he sleeps very little, since he tosses and turns and worries and feels powerless over the situation, knowing I am tired, frustrated, scared and lonely. There isn’t anything we can change about the situation. In fact, if you look at the stats for couples in our position, his point of view is right on target with other parents who are the providers.Caregiver of All Trades
I, on the other hand, have had to reeducate myself. I have had to learn a lot of new terms, and learn about a lot of therapies and techniques to educate our son. I have had to learn the ins and outs of Children’s Hospital, of specialists, of how to be heard and how to communicate with providers so they speak to me as a team member. I have had to learn to be an advocate, an insurance adjuster, a nurse and also be a stay-at-home-Mom. I have had to become a housekeeper and homemaker, which I am absolutely terrible at!
I often feel as if what I do is not appreciated as work, that my husband often looks at it as if I am sitting around eating bon-bons when I could be out working and helping to provide. The reality is he does not see it that way at all, but I am really feeling my own frustration with not being out there doing what I once was good at. I also have feelings of inadequacy since I no longer financially provide for my family.
I often get frustrated at having to go to big scary appointments by myself, at being alone during scary tests, being alone to receive even scarier diagnoses and having the daunting task of having to take that information and educate my husband and family. My point of view is also right in line with those other parents who are the primary stay-at-home caregiver.
There are days I am resentful for the pure fact that he gets to converse with peers while he works, that he can have an adult conversation about something other than poop. medical terms. therapies or upcoming IEP issues. It may seem silly to him, but that is one thing I miss! I miss adult conversations and interaction.
From my point of view, therapists, doctors, social workers and nurses do not count when it comes to the type of adult interaction I need. No offense to any of them of course--they are all good people, well, maybe except for that one social worker. I need to talk about adult things, not about kid things, and some days I am purely jealous that he has the opportunity to do that and I do not. With that all said there have been times that he has said, “Fine, then you go back to work and I will stay home.” But to me that is not an option at this point. I am too invested in Bug’s care to hand it over now. Seeing the Other’s Viewpoint
So, we fit the mold in terms of roles, regardless of gender. This, of course, is where the problem of not being on the SAME seesaw comes into play! Our individual perceptions of the situation are not wrong, because we have to allow for each other’s feelings and viewpoints, but they are not always accurate. My husband may not think I realize how hard he works, even though I am immensely thankful for his hard work, his ambition and the great strides he has made professionally. It has not gone unnoticed that he works long hours and then comes home and still finds energy to play with Bug and to spend time with us. I am equally sure that what I do at home does not truly go unnoticed or unappreciated.
Even if noticed and appreciated, it does not take away from the fact that there is still a huge financial strain and emotional strain at times placed on our relationship. As a male and female, we are just prone to look at it in opposite manners. We are bound to at times feel some resentment toward one another. On his part, I am sure there are days that the resentment comes in the form of the fact that he has to work so hard. I figure he imagines the fun of weekend play goes on all week long, which would of course be bliss if it were reality. On my part, some days I feel that what I do every day is often not seen as work, but instead as that blissful weekend play.
Sometimes we are so stuck in our own viewpoints of the same situation that we cannot see it from the other’s point of view. At times we seem to be at an impasse, both refusing to join the other on the respective seesaw. Then there are times that we seem to just naturally run to the same one. It is a balancing act and an up and down ride that we will be on for the rest of our lives. Sometimes our frustrations come out at one another or maybe come out in words in public, which only exacerbates the situation. We are human and we are going to vent or sometimes share too much. The reality is we do love each other very much, and despite incredible stress and having the odds stacked against us, we have chosen to love each other, to love Bug and to muddle through all of the hard stuff. We want to enjoy and rejoice in the amazing milestones and gifts that our child brings into our lives every day!
Many in our shoes do not make it. There have been divorce rates quoted as high as 80% to 90% for couples raising a child who is disabled, autistic, or has other special needs. The odds certainly aren’t with us, but we love each other and can balance each other.
So no matter how challenging it may be, it is not only necessary to choose the same seesaw, but worth it! It seems in the end, despite the stress, despite our independently stubborn sides, we always come together and end up on the same seesaw. We find a way to enjoy each other, Bug and the life that was chosen for us!Kelly De Angelis lives in Somerville with her husband Steve and son Steven, better known as Bug. When Kelly is not caring for Bug, she is usually making baby and children's hats, blankets and outerwear for her newly created home based business, Snug As A Bug Designs. You can visit her blog at http://ourjourneywithbug.wordpress.com/