The Beginnings of the Not-So-Supermom

So, why create a blog about being a not-so-supermom? Let me start at the beginning. My name is Theresa and I am the very proud mama of Faith, who is 10 and Joshua, who is 8. If you passed us on the street, you'd likely think that we are the "average" American family; Dad, Mom, 2 kids and 2 little dogs. However, our lives are not as they appear to the passerby. Our family lives with Fragile X Syndrome. Never heard of it? Neither had I until my son was diagnosed with it!

My not-so-supermom status started almost immediately after I became pregnant with Faith. What a rollercoaster ride that pregnancy was. From almost miscarrying, to total bed rest, our first months together were scary. But my little girl has always been a fighter...a spunky little monkey! She entered the world nearly 5 weeks early and as cute as could be. I was in love immediately. Even with a rough pregnancy and birth, she developed normally. There wasn't a milestone she didn't meet early, and to this day, she is still at the head of the pack. Faith is the child that lights up a room with her joy and her never-ending kindness is beyond compare. It has been an adventure raising her every single day.

Needless to say, I could not wait to have another child! I knew pregnancy could be tough, but life without Faith was unimaginable, and I knew it would be the same with another baby. By the grace of God, I became pregnant again, and was so excited I could hardly contain myself. Another baby! My pregnancy with Joshua proved far harder than Faith's. Again I thought I was miscarrying, but this time the issues were far more severe. After 8 months of hospitalization and 4 surgeries later, Joshua made his grand debut 6 weeks before his due date. After a pregnancy like that, you can only imagine my relief to have my healthy, beautiful son safely in my arms. I fully expected that life would become peaceful, just like it had after Faith's arrival.

Unfortunately, that was far from the case. In fact, it was only the beginning. I began to be concerned about Joshua's development only days after his birth. When I talked to him, he would not look in my direction. He seemed very far away, lost in his own world. I remember having multiple conversations about my concern with the pediatrician who assured me that this was just a "preemie" thing. At 5 months, Joshua had not yet rolled over. By 9 months, he was still not sitting up. Every doctor's appointment brought more concern on my part about his delayed development. And yet, with every appointment, I was assured that Joshua would eventually grow out of this. He would catch up! I wanted to believe this with all of my heart, but I KNEW something was very wrong. By the time Joshua turned 2 and was not standing and was non-verbal, I demanded to see a specialist. That was when life became more complicated than I ever could have anticipated. We went from one specialist to another to another. There were brain scans and blood tests and more doctors appointments than I can even count. No one could figure out what was wrong with my child, and yet everyone agreed something was very wrong. So, without any concrete answers we started physical, occupational, and speech therapy multiple times a week. Joshua was making some progress, but it was so slow. By the time he was 3, he had said his first word but not much more. He was becoming frustrated that we could not understand what he wanted and needed. The number of nights I fell asleep crying far outnumbered the ones that I did not. All I wanted was to know how to help my son. I was his mommy! I should know how to help my own baby! But I couldn't.

Then came preschool where there were many more therapists, and now special education was added to the mix. I was completely overwhelmed. The first day I met Joshua's preschool teacher, she knew very little about Joshua or his struggles. She smiled and kindly explained that the children would be learning to write their names, some basic math and socialization skills. I burst into tears, knowing that my child could not even walk on his own, nonetheless write his name. I remember clearly being worried that Joshua would fail preschool. There are a thousand stories I could tell you about that year. Some were things that melted my heart and made me fall in love every single day, and others were things that ripped my heart out of my chest. However, for the sake of time, I will skip to a few months after Joshua's 4th Birthday. He had just been in for his annual doctor's appointment and his doctor decided to send us to yet another specialist. This time we were headed for the geneticist. I was terrified. The appointment was a blur. They took some blood, said a whole lot of words that I couldn't wrap my head around and then we left. A few weeks later I received a phone call that would change my life forever. The verdict: "Ms. Taylor, your son has Fragile X Syndrome." And that is where our story really begins.