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Kerri Kava, Published October 17 2011

Kava: My baby was just diagnosed. Now what?

I thought something was wrong. It was there, in my gut. I ignored it. It nudged, and I pulled away. Although I pretended everything was all right, I knew in my heart of hearts all was not. I had to know. I had to listen to what was whispering in my ear, to what was now pounding on my door. A brief visit to the doctor opened a can of worms that never in my life could I have predicted I would face. All along knowing it’s not my job that is hardest, but even worse, that difficult journey belonged to my tiny, unknowing, delicate little child.

It took me approximately one month to come to terms with my hunch. My son was diagnosed with Williams syndrome (WS) at a mere 6 weeks of age. For those who know what WS is, it’s a giant stroke of luck to be diagnosed at such a young age. Most people go undiagnosed for years – some even into their teenage years, because it is such a rare disability.

After that persistent hunch, a couple of doctor visits, one horrible lab-work experience with a newborn – drawing blood from a tiny little arm, breaking his blood vessel in their first attempt – this first-time amateur mom was not so trusting the second time. But my heavy heart reminded me of that whisper … You have to know; you have to do this.

Two grueling weeks later, our results confirming his diagnosis came over the phone, a mere two days before my maternity leave came to an end. There I was in my in fuzzy slippers and pink bathrobe bawling like my baby, not so ready to begin my journey as a special-needs mom.

Now, I think it’s important for you to know: I’m no doctor, no therapist, not even a student studying psychology, and I especially have no fancy letters after my name to prove my opinion valuable. But I do have what it takes to offer my advice, that being, experience. I have had the heartaches, the comments that to this day continue to break my heart, the life-changing fragile decisions to make, the multitude of hours educating myself to advocate for my child, and the efforts to get through a day that many others may never understand, and really, that’s just the beginning.

I’ve walked in your shoes, and I can relate to the whispers in your heart and that disturbing and inevitable pounding. I passionately believe there is not enough support for the heart of a mom.

Whether you are single or have an amazing support system at home, we all cope differently. Please know that as you read this, I am writing to you moms. I can help you by sharing what I went through and what I did after that phone call, how it hit me like a bullet.

It’s interesting because it only took two minutes for that doctor to deliver news that would change my life and the life of my family forever. You are never ever really ready for it. I wanted to hear something more from the doctor, something along the lines of what I’m about to write for you here.

Mourn. It would be foolish to think you can handle learning your child has a disability and not feel pain and sadness. So let it out. There is no shame.

Accept it. Whether you accept it or not, it is your child. Eventually you have to, not only for your own mental health, but for the well-being of your child. He or she need your love – can you give it fully if you’re lying on the floor?

Choose the best way to tell your family and friends. I opted to write a letter. I knew I wasn’t strong enough to call my closest friends and family and tell the story over and over again. Do what is best for you and your child. Your family and friends will understand.

Take time for yourself and remember that although your child has special needs, he or she is just like every child who needs your love. He or she may learn differently, talk differently or not at all, and may have more health problems than others. You will probably have to jump through a lot more hoops and open your home to a lot more specialists and therapists than your neighbor, but your child’s special love is worth all the extra knocking.

To read my full “Now what?” list, check out my blog at www.whoneedswho.

areavoices.com. Kerri Kava is the Newspapers in Education coordinator for The Forum. She can be reached at kkava@forumcomm.com.