FOCUS Dinner / Dance

Over the weekend, Brad and I had the honor of speaking at the FOCUS - For the Love of Children Fundraiser. 

We were so flattered when FOCUS asked us to speak at the fundraiser.  The organization has done so much for our entire family (grandparents, aunts and uncles included!) that we were eager to share our story and help others see what a worthwhile organization FOCUS is.

In delivering our remarks, Brad and I tag-teamed.  He introduced us and talked a little about Claire's early days, and I spoke about finding FOCUS and our hopes for the future with FOCUS.  Touchingly, in his introduction, Brad said a tender thank you to me.  It was really special.

Here are some of my remarks from the dinner-dance.  I hope you enjoy them!

****

Our story began on August 3, 2010, when I was 15 weeks pregnant with Claire.  Just days before, Brad and I had been out to a lovely dinner at a nice restaurant, celebrating our 8th wedding anniversary.  We had just returned from a week-long beach vacation and were both tanned, relaxed, and content. 

In the car ride on the way to the restaurant, I remember being stricken by the thought that our life together was perfect: 

• I had a wonderful, handsome husband.
• We had a strong, loving marriage.
• We both had the careers that we wanted and promising futures ahead of us.
• We had a house that we loved in a quaint, family-oriented neighborhood with a pool, a park, and a soccer field nearby.
• And, most importantly, I was expecting the first combination Masters' Champion / U.S. President / Supermodel the world had ever seen.

Just a few days later, everything we thought we knew about our lives and our future changed. There are some days in your life that aren't forgotten, and you're never quite the same afterwards, and this was one of them.

On August 3, 2010, we sat in a darkened ultrasound room and listened in disbelief as a doctor told us our baby had too much fluid on its brain and was bound to have significant brain damage.  We heard words like "severely disabled," and "limited cognitive functioning."  I remember very clearly hearing the doctor tell us that our child would have a "limited opportunity for a typical life."

After that day, life didn't feel perfect anymore. 

It felt scary and uncertain, and we both wondered whether we would ever be happy again.  

While we didn't know what the future held, we were certain of one thing:  We loved our little girl and were excited to meet her.  We decided we would help Claire face her challenges with all the courage and strength we could provide, and we would do whatever we could to give her the best life possible, even in spite of her limitations.

Claire was born on January 5, 2011, and as predicted, she had a rocky start.  She stayed 30 days in the NICU, and during that time, she had seizures almost immediately after birth and was placed on heavily sedating medication.  As a result of the medication, she had trouble eating.

When we finally made it home after a month, we had to adjust to a whole routine.  Most new parents go through a period of adjustment when they bring a new baby home.  But for us, on top of the regular issues like late-night feedings and diaper changes, we had to worry about things like medication schedules, doctor's appointments, and therapies.

Life felt chaotic and uncertain.  This was not what we had planned or expected.

But then we found FOCUS. 

I remember the first time I called FOCUS.  I've often heard Lucy [Cusick, the Executive Director of FOCUS, and a special needs parent herself], say she came to FOCUS kicking and screaming, and I can't say my experience was much different.  One of Claire's social workers kept encouraging me to call, but I kept putting it off.

Sometimes, it was because I was in denial.  I felt that we didn't need FOCUS, we were just fine.  Other times, it was because I honestly believed that Claire's challenges were too significant for FOCUS to handle. (Boy, was I wrong on that account!  If there is one thing I have learned over the past two years, it's that FOCUS is for everyone.)

So, one afternoon, in order to placate that pesky social worker, I picked up the phone and called.  And an amazing thing happened.  Joy [Trotti, Associate Director] answered.  And she listened with compassion, empathy, and understanding as I told her about Claire and the challenges she had already faced in her young life. 

After that, an even more amazing thing happened:  Joy shared her own story with me.  She told me about her daughter Rachel.  She shared her own family's triumphs and challenges, and as I listened, I realized that I was talking to someone who truly understood what our life was like.

Later, I talked to Elizabeth Hewell and had a similar experience as she shared her story.

I knew then that we had found a group of parents that we could really learn from.  And learn, we did.  We learned:

• That we didn't have to do therapies with Claire 24-7.
• That it was "okay" to do "normal" things like read stories or go for walks.
• That missing a dose of medication wasn't the end of the world.

Most importantly, we learned that life could feel perfect again.

Over the past two years, we have enjoyed family activites with FOCUS. 

• We've been to the zoo. 
• We've participated in the Halloween party. 
• Claire's had a private audience with Santa at the Christmas party.
• She's had her picture taken with all of the Disney Princesses at the Valentine's Day party. 
• She's even had her moment in the spotlight strutting her stuff at the FOCUS Fashion show.  (Maybe this supermodel business will work out after all!)

At at all of those activities, we have met many families with children of all different ages.  We've had an opportunity to find support and comfort and share information such as:

• Which wheelchair headrest works best
• Which therapies we should consider
• Which seizure medications we should ask about at our next neurologist visit
• The pros and cons of a g-tube
• And, most importantly, how to get the Special Needs Access Pass at Disneyworld

We are really looking forward to growing with FOCUS over the coming years, and I know we have a lot to look forward to.

Thanks to FOCUS, Claire can attend summer camp when she gets older.  She can participate in a swim team. She can dance with her daddy at the father-daughter dance.

FOCUS makes these kinds of typical experiences possible for Children like Claire.

FOCUS also helps us prepare for the future by offering programs like the Parent Education Conference, where we can learn how to set up a Special Needs Trust and the Extreme Home Modification Tour, where we can visit the homes of other FOCUS families and learn about adaptations they made to make their homes more accessible for their children.

Thanks to FOCUS, Claire no longer has a "limited opportunity for a typical life" as our doctor once predicted.  Instead, FOCUS has enabled us to give her the most typical life we can, despite her disabilities.

To keep programs like these going takes a lot of time and effort from people who care about children like Claire.  It take a lot of funding and generosity.

We are so glad that 30 years ago, two parents had the foresight and wherewithal to create a parents' network and lay the foundation for FOCUS, and we are grateful for your past support that kept FOCUS going through those years.

As fairly new FOCUS parents we are looking forward to growing with the organization over the next 30 years, and we appreciate your continued support and generosity in making that possible.

****

If you can't tell, Brad and I absolutely love FOCUS, and we are so grateful for all the organization has done for us.  Now, you know I would be remiss if I didn't include a link to the FOCUS website for those who wish to donate, so here it is.