I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier.
That was bullshit! Well, the part about a stronger, healthier marriage.
Marriage is tough at the best of times and then you throw in a load of curveballs;
Therapy
Appointments
Phone calls
Meetings
Surgeries
Worry
Stress
Upset
Tears
Etc
Etc
Your marriage takes a hit, a huge hit. It's tough at the best of times to find time for each other. It's tough to plan date nights, vacations and time to connect, because life is busy. We start to take each other for granted and become robotic like in our daily lives.
When Adele was born, I was a SAHM. This was my calling. I had the time to take care of my children. I had time to take Adele to appointments. I had time during the day to make phone calls and schedule therapy sessions. I was doing my job as a mother.
I was gaining weight.
I was tossing and turning at night.
I was unsure if I was a fit for this job.
When Adele turned two, I decided that I needed to go back to work. I missed teaching terribly and my boss was willing to let me join the team and work part time, as this was all I felt I could handle. I needed adult conversation and I needed to feel valued. I also needed a pay cheque. I wanted out of our home, forget the memories of the flood and buy something bigger and better. This allowed us to do so many exciting things with the girls.
Going back to work has given me an outlet, a time to talk to colleagues, laugh, eat teacher snacks and do what I love to do. It has also added an extra calendar in the house, schedules and routine have become even more important and I'm happy to say that it runs like a well-oiled machine.......when everybody is healthy, when there is no therapy, when we don't have appointments, when we don't have to book surgery, when we don't have extra-curricular.....
James and I are so invested in our children, that we have failed to work on our marriage. We don't communicate effectively. We don't take time to listen to each other. We plan meals. We plan swimming lessons. We look at the calendar and decide which one of us will take Adele to her next appointment at the hospital. We plan out which days he will take off for Adele's surgery and which days I will stay home. Consistency is imperative for Brinley. We need to get her to school on time, take her to swimming lessons and make sure that her schedule is not thrown off. Her world is just as important as Adele's world.
James and I are two ships passing in the night.
In the beginning, we said that we would work as a team. This is a partnership that we entered over eight years ago. We vowed that we would be in this together, for better or for worse.
How did we get to this point?
We have allowed ourselves to get to this point. I blame us. I blame our lack of commitment. I blame my IUD. HA! HA!
This parenting gig is tough. I knew the night we conceived Adele...yes, I know the night! We didn't know that this was going to be our journey. I didn't think about that things would not go as planned. I did not think about how much my life would be consumed by worry and fear.
I have let all of this interfere with my love for my husband. I have become a different woman. I have allowed others to dictate my happiness. When did all of this happen? When did I forget that I am a person too? When did I let go of who I am and my interests and my hopes and dreams?
I am a part of the most amazing group on Facebook. All of the moms are medical mommas. They are the strongest warriors, they are incredible and they always have each other's backs. We laugh. We cry. We send each other vulgar messages. We talk about bedazzling vaginas. (This may save my marriage) We are real. Last night, one of the moms was sitting in emergency with her child.
This was her message:
He's been vomiting all day and can't keep anything down. Decreased output. Don't know if it's his kidneys or his gut....pseudo obstruction.
Well, on a positive side, we had a long run at home. Going to stay optimistic.
Just had a shitty emotional weekend and my body is saying eff you....I'm sore and I'm tired.
My response:
I like how you go from positive to shitty. You sound like the rest of us. We try to convince ourselves that it's all ok...we've got this and then two seconds later, we're all like....this fucking sucks and I want to cry and hurt someone.
Her response:
Krista, you hit the nail on the head. Most days, we are strong warriors. We smile through everything, but today I am not strong.
Another dear friend told me recently that she talks to me about her son's health concerns because when she discusses issues with her husband, they fight. They can't see eye to eye. They are stressed.
A dear friend last week, had an emotional breakdown and she confided in me that her husband has nothing left to give.
We all struggle because our feelings of intense love for our children become intertwined with frustrations, fears and total exhaustion. These feelings turn into arguments with our spouses. We become so upset, so engrossed in our own pity party, that we think our spouse just won't get it. Meanwhile, they are experiencing the same emotions.
I start to shut down when I feel that I can't handle anymore and in turn, this has placed a wedge in the marriage.
If I am emotionally drained, I get snippy, I cry, I don't always reach out for support and then I push in down as far as it can go and then the cycle repeats itself.
I understand the value of taking care of yourself. I understand the importance of communication and I understand that keeping our family unit strong is of the upmost importance.
Date night will not fix our marriage. A weekend away will not fix our marriage. A lottery win will not fix our marriage, although it would pay for a top notch therapist in Bali.
James plays a vital role in this marriage. He continues to reassure me that he wants our marriage to survive, he says that he will do what is needed so that we can move forward, but James continues his robotic routine of getting up, going to work, texting and asking if I feel ok and then we talk about what we will have for dinner.
Although he feels that he is making positive changes, I feel that he says what I want to hear and then the action part means nothing, it is stagnant.
What is needed:
Communication.
It is truly that simple. Communicate our fears and our worries. Communicate respectfully when we are frustrated. Stop retreating into myself. Be cognizant that the other person is also experiencing similar emotions. Access resources and community supports that will help guide us through this journey. Stop pretending that it's all ok.
It is going to take time.
To my dear friends who are struggling, you are not alone. You will prevail. You will fucking rock this. You are a warrior. You are strong. You are scared. You are weak. You are frustrated. You are courageous. You are beautiful. You are capable. You are human.
We hold each other's hands. We realize that we are not the Instagram life. We make mistakes. We fart in our sleep. We say the wrong things. We need to reach out when we need help.
I was once told that when you have a child with special needs, your quality of life becomes fuller, richer and your marriage becomes stronger and healthier.
