While having a conversation recently with a good friend, the topic of marriage came up. In particular we talked about marriage, kids, and how hard it can be to keep it together. My husband and I have been together for over 16 year’s and married for 10. Before our son was born 8 year’s ago we had plenty of fun times together and hardly ever fought. We are both huge baseball fans and spent many days traveling to major league baseball games. In fact, we love the sport so much that our wedding reception was set up to reflect our love of the game. Tables were named after MLB stadiums, and guests signed baseballs that we placed at each table. It was such a great day! We also traveled a bit and got to enjoy plenty of weekend getaways up north. We even got to have long chats about nothing and everything. Oh, and did I mention how my husband proposed to me in a canoe on a lake? Talk about romantic!!
Fast forward 8 year’s later, and lets just say things are different. Not bad different, but different.
We all talk about getting married, having kids, buying a home, and all of the other “life” stuff. What we don’t talk about though, is the really hard experiences that may come with all of those beautiful things. The birth of our son was the single most amazing moment of my life and my husband’s life. We waited a long time for that little boy and could not wait to start our family. We were ready. We read the books. We went to birthing glasses. We went to couples therapy. We. Were. Ready.
Looking back now on those baby classes and couples therapy sessions, all I can think of is one thing. Why wasn’t the topic of special needs parenting ever mentioned? Why didn’t our therapists ever ask us how we would handle having a child with special needs? I wonder what we would have said?
The first year of parenting was pretty “typical”. We were over the moon with excitement over every little thing, we were up to our ears with poop, and we were EXHAUSTED! Although now when I think of how tired I thought we were back then, I can’t help but laugh.
I started to notice things were “off” with our son around his 2nd birthday. He wasn’t talking like his peers, he didn’t walk until he was 18 months old, and he had some fine motor and gross motor delays. I also noticed that he couldn’t blow out his birthday candles. After many concerned phone calls and meeting with his then pediatrician, we we were told not to worry. We were told that he is a boy and “boys are slow to develop”. We were told he had “only child syndrome” and to give it time.
After another year of watching his peers speed right by him developmentally, we decided to contact a developmental specialist to evaluate our son at age 3. For anyone who doesn’t know what one of these appointments are like, it is not fun. The paperwork and questions are grueling and the appointment is 3 hours each day for 2 days. Every detail about your family history, pregnancy, delivery, and your child are discussed. Every little move and sound your child makes is carefully watched; their actions to certain situations, sounds, and the environment. Then you go back a few days later to discuss the evaluation and outcomes. That first evaluation was one of the worst moments in my life to be honest. It was the moment I heard a laundry list of areas my son was struggling in. As much as my husband and I knew our son had delays, it was heartbreaking to see how delayed he was on paper. His cognitive delays were pretty bad as was his speech. That day we left with a diagnosis of: developmental delay, speech apraxia, hypotonia, motor dyspraxia, mixed expressive and receptive language disorder (MERLD) and sensory processing disorder (SPD).
We were scared, confused, and in tears. Our son’s speech was so severely delayed that when I asked the specialists if our son would ever have intelligible speech, their response was “not sure”. Our son, our 3 year-old sweet, funny, beautiful little boy could not speak, could not climb, could not jump, or ride a bike or scooter, could not blow bubbles, and could not do what other three year old’s were doing. Neither one of us were prepared for any of this and we had no clue what to do or where to turn. All we did know was that we needed to get our little boy started in extensive therapy 4 days a week for speech, occupational therapy, and physical therapy. Once we found specialists to work with our son we thought everything was going to be fine. We thought we were ready to handle it all and we began our journey as special needs parents.
Everyone knows parenting is HARD! However, special needs parenting is even harder. Some statistics even compare the amount of stress special needs parents face is equal to PTSD from combat in the military. I’m not sure I would compare it to that level of stress, but I will say that it is intense!
Then there are the statistics of divorce rates for couples who have a child with special needs. Did you know that it is more than double the rate of divorce than that of the rest of the married population? Crazy right? So this brings me back to my original question: why aren’t more couples therapists and birthing classes discussing special needs parenting, the possibility of it, and how we would handle it?
What I am about to share with you is my own personal experiences. It is personal, but it is real. When I told my husband that I wanted to write this piece, he immediately asked me why? The answer was simple; I want to share my journey with anyone who might read this and maybe help someone feel like they’re not alone. Every relationship is hard, and the challenges of co-parenting can add additional stress to any marriage. When a child has special needs like our son does, it poses a different level of stress and many times the burden of therapies, evaluations, IEP meetings, fighting with schools for support, fighting with insurance to cover the cost of therapies, lack of support from family & friends, doctor’s appointments after doctor’s appointments, the constant WORRY, and the lack of sleep can leave one or both parent overwhelmed. In our case, the stress fell on both of us and we were both taxed out.
When my husband and I both realized how much therapy our son needed we decided that one of us would need to stay home to make sure our son got to all of his appointments and received the level of care and interventions he needed. That person was me and I was happy to do it. I left my job as a nurse and began my new role as stay at home mom. My husband worked 12 hour days (sometimes longer) and traveled A LOT for work;and sometimes he was gone for weeks or months at a time. We both put all of our eggs into one basket and we grew distant, and with my husbands work hours and travel we grew even more distant. Not because we didn’t love each other or because we wanted to grow apart, but because by the end of the day we had nothing left to give! I was exhausted from being home with my son and being the sole provider for all of his needs, driving over and hour each way for his therapies each day, keeping the house clean and safe, carrying over therapy and educational needs at home, laundry, cooking, all of the stuff that runs a home, while putting out 1,000 little fires each day. My husband was just as exhausted from working long days at a job that is demanding, traveling, leaving the house at 6am and not returning until after 6pm on most days, and then having to come home and punch in to help me with bed time routine (which is like trying to gather a flock of chickens). WE WERE TOAST. One of us always fell asleep and then we would do it all over again the next day. It was like groundhog day. We were at the end of our ropes and we didn’t have a village. Sure, we had some help, but it was very little. Some family members kept their distance because they didn’t feel comfortable around our son and didn’t know how to engage with him. This added even more stress to our marriage so we ended up hiring a tutor to come help us out 3 days a week. She was a special needs educator and she ended up being a true life saver for our son and became a dear friend in the process.
Notice how everything we did revolved around helping our son? What were we doing to help ourselves though?? Not. A. Thing.
My husband and I got to a point where we hardly spoke and when we did, it usually ended up into an argument. We always discussed our son and how his therapies were going or how his day went, yet we never asked how WE were doing? When my husband went to work, he would call or text me and ask about our son but would never ask me how I was doing. There were no more relaxed nights on the couch watching our favorite shows because neither one of us could keep our eyes open. Date nights became so few and far between because let’s face it, leaving your child who has special needs is HARD no matter who you leave them with and when we did get the chance to get out, we always ended up talking about therapies, doctors, what we should try, and how tired we both were. There was zero romance, and intimacy was becoming extinct. I missed the intimacy. I missed feeling my husbands arms around me and kissing me goodnight. I missed laying in the “nook” of his arms and feeling safe. I missed the long talks we used to have. I missed going out for breakfast or coffee. I missed the sex! The unplanned spontaneous sex on the kitchen counter and I wanted it back. I wanted it all back, especially my husband and myself. We were both so lost.
Marriage counseling is not for everyone and it is not fun. It is costly and takes up more time which is something we were already short on. I remember telling my husband that we needed to invest into US. We bent over backwards to help our son and did everything possible to make sure he got the best care. It was time we did the same for ourselves and our marriage. If we didn’t, I was afraid we would fail and we both felt strongly that we did NOT want to end our marriage. So we took one for the team and went to marriage counseling once a week for 16 weeks. I won’t get into all of the details of our therapy sessions together, but I will say that the homework was FUN!
Today, 3 months later a lot has changed. We moved 1400 miles away from home and life is just as crazy. Last week we ate frozen pizza for dinner more than I would like to admit, but we were all full and happy. We always sit down for dinner as a family and sometimes we save our dinner for after our son goes to bed when we can eat and chat about our days and just focus on us. One of my favorite things we do now is happy hour. We pick a few days each week to enjoy a happy hour when my husband gets home from work, and we have a drink together and unwind for 30 min. We talk more and fight less. We check in on each other throughout the day and just be present. There isn’t much time alone together but we are working on that. For now we are just making the best of our circumstances and giving each other the time we need together as a couple as well as separately. We don’t get out for nice romantic dinners or nice vacations alone together but you know what? It’s all good. This is the season we are in and one day we will get that time together. For now, I will take the over cooked boxed pizza for dinner, the conversations had while one of us in the shower and the other is on the potty, and the 30 min of quiet time we get each day. This is our journey. It isn’t always easy and we are far from perfect, but this is it. This is love, marriage, kids, and everything else in between.
Oh, and we now have an island in our new kitchen. 😉