Sunday, August 5, 2012

Creating My Village

When I first found out I was pregnant, I was beyond excited. I was elated...I was nauseous... I was scared out of my mind. We had been trying to have a baby for about 4 years, and thanks to Polycystic Ovarian Syndrome (PCOS) we ended up with a negative pregnancy tests month after month. I had honestly thought that after that long we would never get pregnant. I was so scared of doing anything that might jeopardize this little blessing.

Within a day of the positive test, I was seeking out every single piece of pregnancy info I could lay my hands on, first being the Holy Grail of pregnancy books: What to Expect When You're Expecting.  I quizzed my mother, my grandmothers, my mother-in-law, our sisters, and basically anyone who possessed a uterus what their pregnancies were like. Armed with all their wisdom and experience, I felt like there was hope that I might not screw up my kid after all.

Five weeks into baby bliss, everything got turned on it's head and our little man began having seizures while my in-laws, Matt and I were in New Jersey visiting an ill relative.  To say that I was scared out of my mind would be putting it very mildly. Joe flew up as soon as he could to be with us and we spent the following week in a hazy hell of spinal taps, EEGs, and finally getting diagnosed with Epilepsy before we were allowed to bring him home. We had no idea just how much our lives were going to change.

All around me, my friends with babies had typical questions and concerns about their little ones. I had no one to compare our experiences to or ask questions about medications and therapies. As a result of our unexpected detour into Special Needs World and a hearty dose of undiagnosed Post-Partum Depression, I withdrew into myself and a few friends and family members dropped off our grid. I also suspect that more than a few of them were tired of hearing me complain about insurances and therapies. In their place we gained new specialists and therapists. I would see other moms bring their kids in for their appointments and we would smile and make chit chat, but never anything significant. And while we have tons of kids in both of our families, none of them have had issues quite like Matt's, so it was difficult for them to understand what was going on at times. I had never felt so alone in my life.

Shortly before Matt's second birthday we ran into a family we had met when I was pregnant . This time we had Matt with us and they realized that we had something very important in common: our kids had special needs. Their boys were older than Matt, but they had already been through a lot of things we were just now learning about. We bonded very quickly, trading diagnoses back and forth and finding out we had specialists and a physical therapist in common. The more we talked it felt like we felt like we had known them for years. I especially bonded with the boys' mom, Karen. Within ten minutes we had each other's contact information and Facebook information. I am so thankful we met them and that it brought me out of my cocoon.

Soon, I was like a special needs heat-seeking missle. I approached a mom in Target when I saw their kid was in a special stroller and start talking to her. That awkward exchange led to Matt's first play date. We met a family at SeaWorld and asked them about the model of wheelchair their son was using when we knew that wheels were in Matt's future and that led to another Facebook friendship. Karen introduced me to a group of special needs moms that she has been involved with for years and I jumped right in with them too. These are some of the strongest, most amazing people I have ever had the pleasure of knowing. They are amazing advocates for their children's healthcare and educational needs, they support each other when their kids are in the hospital, when an IEP meeting doesn't go the way it should, and even in the grief process when one of the kids get their angel wings. I know when things go wonky, they are always there to listen and send a virtual hug.

I am thankful to have so many people involved in our life that love us and love our kid. They have been with us and cried and prayed with us through scary times and they're the first to celebrate with us in happy times. I am humbled by the time and generosity they have shown us time and time again. They have become our family, our tribe, and we are more thankful for them than they will ever know.


  1. Hi Brandi! I am a special needs heat-seeking missile, too! Love that term, by the way! I can honestly say that at least 10% of my friends on facebook I have never met. But we support each other so much, that I swear it is better than any support group at a church or hospital! My almost-six-year-old son has CP and epilepsy (he had infantile spasms at around 6-8 months old, but his ACTH treatment wiped them out - YAY). He is severely impaired, but man is he a joy to behold! Love our special kiddoes! (By the way, I actually live in southern New Jersey and I would have sent you right away to the Children's Hospital of Philadelphia - it's the top ranked Children's hospital in the nation!) - Maggie

    1. Hi Maggie!I love your site! I am getting pretty shameless now about approaching other SN parents. My husband compares it to picking up women in a singles bar! Matt wasn't diagnosed with infantile spasms in June of this year after his 2nd birthday. We changed the dosage of his seizure meds and started the Ketogenic Diet. The other option had the potential to take away his vision and I wasn't cool with that idea at all. So far it is working good :)

      We were in Freehold, NJ when all of this started and got sent to St. Peter's University Hospital. Where do you live in NJ? Hope to hear from you again soon and thanks for visiting!

  2. So glad to have found your blog. yes, other parents are the best resource this is. I totally get this post My child has an undiagnosed developmental disability and Epilepsy. We stick together. Thanks for sharing.

    1. Hi Heather! Matt has a whole slew of health issues, with epilepsy being the one of most concern at this time. We also have some genetic issues on our plate, but we aren't sure exactly where they come into play--if at all.

      I love your site, especially all of your photography. Aidan has the most gorgeous eyes!! Isn't unfair how boys get those long perfectly curled eyelashes and girls don't?

      Thanks for visiting us and hope to hear from you again soon!!

  3. I totally get this. My son has a developmental disability and Epilepsy. parents really are each other's best resources. Thanks for sharing. Heather