The One Thing You Can't Prepare For

When I became pregnant with my first child, I spent the majority of my waking hours preparing for the most amazing moment of my life, the birth of my first child. I learned from my husband to make lists, heaven's forbid we forget someone or something, so the computer came in handy and the lists began. I wrote lists on a multitude of topics; from what to pack in the hospital bag, to what was needed for the nursery.

Of course, a great deal of time was spent selecting the perfect baby announcement, layette, baby furniture, decoration, paint colors, etc.

And most importantly, the baby nurse had to be booked immediately (after all, the good ones get booked up 9 months in advance). Our friends even admitted to calling and booking their future baby nurse before they made the announcement to their parents!

After several weeks of preparing, including agonizing over baby names (more lists, please!) we went for a sonogram and the doctor began to point at the screen. “So here is Baby A and….[wait, baby A? does that mean there is a baby B?] Yes! He said--you are having twins!” My husband was in a state of shock but I was not. For some reason, I had always known in my heart that I was going to have twins. So back to making more lists!!!!

I began to get nervous so I made lists that I thought might help with my anxiety. There was the email list to be sent to all my good friends and family the minute the kids were born. The address list for the baby announcement, the emergency contact list for me and the baby nurse, just in case I could not think straight in case of an emergency. The list of things to take to the hospital and the list of people that should be called the minute the baby was born, including the mohel, in case we had a baby boy.

I even began reading some books on motherhood, in addition to untold hours of internet research, which told me exactly what I should and should not be doing with my newborns. I embraced each and every piece of advice as if it were the Bible, even if they contradicted each other. Keep in mind, that I had never changed a diaper in my life, well maybe once for someone else's kid, but truthfully, I was not really into babies and they could sense that. A baby can sense someone who is not into them immediately--so it really didn't count.

I never gave a second thought to having a child with special needs. Considering the fact that I was having twins and the statistics are so high these days, the thought should've crossed my mind at least once. I do consider myself to be a spiritual person, so I added additional prayers to my daily ritual of prayer and hoped that g-d would help me. It never occurred to me that this was going to be my fate.

Alex was born with low muscle tone so we took him to a pediatric neurologist, there was one doctor who everyone seemed to agree was the best and he suggested Alex be evaluated by Early Intervention. “What is early intervention,” I asked. It is a service given to all children whereby they are evaluated and given free services determined by need. All I could think of was, perhaps my tax $ was going to be of use to me! I had no idea that EI, PT, OT, ST, etc were abbreviations that were going to play a huge role in my parenting.

Alex was evaluated and given 2 ½ hour sessions of both PT and OT every week. Since he had appeared to be withdrawn and rarely smiled, I was eager for him to begin therapy. I really liked both the therapists and Alex did too, so this helped with the adjustment of having complete strangers spend time in our home at a time when I was still extremely hormonal and trying to figure out the best way to manage my new roles. Within months, Alex improved and all was well. At that point in time, we noticed Lauren, who had been so cheerful and amazingly content staring out the window for hours, beginning to withdraw as well. All of a sudden, she stopped smiling, engaging, etc. I began to worry about her but knew what to do. “Here we go again”, I thought, “Lauren will get services and this will all be taken care of.” So we went to the same pediatric neurologist who seemed to feel that there was no urgency to an EI meeting. After several mishaps, I learned to trust my gut as a mom and knew better. I wanted another opinion, so we went to see a doctor who came highly recommended by Alex's therapists who were now my new friends! Dr P was concerned. Lauren was not where she should have been for a girl her age. The fact that she “stagnated” as I called it, and the fact that she was unable to sustain eye contact concerned her very much. She presented us with a diagnosis. Lauren was placed on the low end of the ….Autistic Spectrum. Fear and sadness surfaced. My husband and I each had experience with Autism (we both have distant cousins who were diagnosed as well.)

This was not a label we were ready to hear. I guess no one is ever ready to hear such news. We walked home speechless and then began to deal with this in the most effective way we could, talking about it. We always talked; this was the strength of our relationship. We did not realize that this diagnosis could actually help out precious little Lauren. She would be evaluated by EI and given hours worth of services. Alex's therapists agreed to take the case and we were also assigned new therapists. Lauren's day was (and still is) filled with therapy.

So these days, my life too is filled with therapy (instead of lists). Lauren has made great progress! Although she still has a way to go, I am so grateful to all of the amazing therapists that walk through my door each day and to the OT's at the sensory gym that we walk to (20 blocks) twice a week. I have learned that, in life, you cannot prepare for everything and all the lists in the world don't ensure things will happen in the way you planned. I am hopeful (and anxious) because I do not know what the future will bring, but I have learned to live in the moment and to relish the times when Lauren reaches a goal or overturns a milestone—because these are the things that are important now.