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"Your Child Has Fragile X Syndrome"
"What??" my husband and I replied back to the Doctor.
We couldn't have a child with a disability. I had never even known anyone closely who had a disability. We also had another child that was typical so it seemed so out of left field.
"I'm very sorry" the Doctor said to us.
And in that split second, our lives were forever changed.
Jack Thomas, now 3 years old, was diagnosed with Fragile X Syndrome, the most common genetic cause of Autism, 2 years ago when he was 15 months old.
The pain was unbearable. The grief was unmeasurable. The tears and fears were blinding and heavy. Our lives were forever changed, and so was our marriage.
Again, I had never really known a person with a Developmental/Intellectual Disability before I had my son. I knew nothing about special needs. As a modern woman with a College Education and a Master’s Degree I felt very underequipped for what was about to be coming in our direction. I was about to enter a world that spoke a foreign language as far as I was concerned. Acronyms such as IEP, OT, SLP and PT were commonplace and I needed to learn how to shift my thinking, my attitude and help my child and my marriage.
Long discussions about therapies were a hot topic of conversation with my husband. Medications were a close second. We talked about Fragile X day and night. Our relationship as a hot married couple of 12 years was demolished down into discussions that accompany having a special needs child. I feared a divorce may be the next thing coming as a dark depression swept over me. I was either researching my child's syndrome, caring for him directly or sleeping as being unconscious was my only refuge from the pain. Caring for my typical daughter was sad to me because I just cried over everything she could do on her own and dubbed it "a miracle".
Connecting with my spouse was the last item on the list. Actually if I’m being brutally honest it wasn't even on my list. Going on dates only provided time to talk about Jack's Syndrome at a new table that wasn't in our kitchen.
My relationship with my husband began to suffer as a result of our new fate. Why wouldn't it, to me it was the worst thing that had ever happened in my entire 38 years on planet Earth. The more my husband asked me to not talk about my son day and night the more I seemed to want to talk about it. Like a weird OCD had washed over me and it was all I could think about.
Recent estimates in the United States show that about one in six, or about 15%, of children aged 3 through 17 years have a one or more developmental disabilities. Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and typically last throughout a person’s lifetime so they don't "outgrow" it.
As the days became weeks and the weeks became months I began to adjust to my new fate as a mother with a special needs child. My husband also began to absorb the impact but his grief was different. While I cried and worried he seemed to grow more focused on his next steps to support our future which now included providing for Jack for the rest of his life.
Russell and I are High School Sweethearts now married 14 years. I love hearing the stories he tells about the first time he saw me at 14 years old at a mutual friends Birthday Party. When I turned 16, he sought up the courage to ask me out on a date. We have been inseparable ever since that date back in 1993. Our relationship has seen lots of life events including the divorce of his parents and then of my parents, the deaths of family and friends, College, Graduate School, getting fired, making bad choices, buying 2 houses and having 2 children.
We have had celebrations and tragedies. We had always managed through it all together but somehow Jack's diagnosis felt different. The different ways we were processing our grief about our son wasn't bringing us closer together, it was driving a wedge between us. A disconnect began to emerge.
Going to bed, once a ritual for us that involved chilling out together and unwinding was now a separate affair as he stayed up late working and I staying up late having a meltdown, most nights on the phone with my Mother or my best friend Jen.
Sex became nonexistent as I crawled deeper inside myself swallowed with grief.
Six months into The Fragile X Diagnosis, I knew I needed to get help. I wasn't eating, wasn't sleeping, was sad 24/7 and my hair began to fall out. I was watching my husband continue on and I felt like my life was heavy, dark and sad.
I made an appointment with a Psychiatrist and agreed to take some medication to help me function. I knew my grief was heavy when the Doctor that I was seeing cried after I told him my story. The medicine helped me to be able to sleep and feeling rested helped me cope with all that I had on my plate.
The next step was trying to get Jack's care organized. I filed for disability for him so that he could have access to services. I then called an advocacy service to help support me in what needed to be done. I then made appointments to meet with a speech therapist, an occupational therapist, a physical therapist and a behavioral therapist to begin working with my son and teaching me how to help him.
Next, I went on Facebook and found the Fragile X Group. Once I was added to the group I had a community of people that I began chatting with and speaking to on the phone to begin learning how they were helping their children and taking care of themselves and their relationships. Being in connection with people who were in my shoes helped me feel less isolated and less depressed. I began to meet in person those moms and families who lived nearby our family in Denver.
Finally, it was time to reconnect with my husband whose patience should get an award. I began by asking him to go out on a lunch date with me. It had been 8 months since the diagnosis and I’ll bet we had sex less than 10 times in that period.
I began our lunch by apologizing for not being focused on our relationship and telling him that I was officially reprioritizing so that having a good connection with him was number one on my list. I also told him that I wanted us to pick something new that we would do together to keep us in connection. He liked that idea and suggested that we try to take a bath together once a week. I told him I thought that was a great idea and could we do that tonight. He smiled bigger than I had seen him smile in 8 months and said "I would love that, I have missed you Lisa."
That lunch was a little over a year ago and I am happy to report that I have kept that weekly date with my husband. I have been much more focused on my relationship with him and now have found some Zen in my life balancing having 2 kids, a career and a husband. It has made my life feel a little bit more normal to have regular family dinners, go to bed with him at night, watch TV together and be present in the marriage with him.
Not completely sure what the future holds for my now 3 year old son but I do feel more confident that I will be handing things as part of a team with my husband.
The lesson I have learned from the early part of getting a very scary diagnosis is that the sun does come out again, even when you never thought it would. Time helps to heal and being in connection with people you love and who love you helps the dark clouds part so that sun can shine down. Remember to take care of yourself and your relationship. Those two things are the foundation for your life.
