Hope 4 Bridget

I have seen it time and time again.  Love and faith - repeatedly instilled in those who have children and/or family members with special needs.  We recently moved back to our home town, and over the course of 6 weeks, as God would have it - I have been blessed to meet two families who have children diagnosed with a rare disease.  For one of the children affected I had the privilege of attending their charitable event in honor of Bridget - who suffers from Batten's Disease.

I was amazed at the hope and spirit of Bridget's parents as well as the love and support of those surrounding them.  I have always believed that God has a purpose for each of us and that we are brought together through Him to help guide us through our lifetime.  I saw that miracle when I met Kerry and Lori - hosts of the event and friends of Bridget's family.  Their amazing outpouring of love and dedication to get the word out about Batten's disease as well as rare disease as a whole - was inspiring.  As an individual who is dedicated to bringing about awareness of rare disease to the public - I was honored to speak at their event on behalf of the Children's Rare Disease Network.  I was so proud to partake in their festivities and speak about the Global Genes Project campaign. 

Although I have had my share of difficulties, fears and sorrows through the life of a child with a rare disease - it has been yet a blessing and miracle to be a part of his life as well as a part of others who share similar struggles. 

I understand the sorrow, the hopes, and the struggles we all face with a special needs child – especially one diagnosed with a rare disease.  I wrote this long ago – when Ian was first diagnosed.  What I have always been proud of the most about this piece – is the ending.  That no matter what discomfort I was surrounded by – that I have always been blessed with positive thoughts and strength to continue forward…..and furthermore, have been blessed to understand what others have gone through as well…..so that we each can share a little bit of ourselves with each other – through familiarity and faith…

 It's a cold lonely evening. The air is crisp and grabs your throat
as you take a breath. The music playing in the background is
soothing yet brings about those memories that are dear to your heart
and should have long ago been washed away with tears of
forgiveness. It's as if life is only present because it's being
allowed to dance in front of you, little steps and sweeps, only to
pause when a fleeting thought escapes your mind. The children are
asleep and life suddenly presents itself in all its glory. Pain,
sadness, fear, denial, smiles, laughter and excitement – emotions
are continually darting through the mind; which one will be chosen
during this period of stillness when one finally has a moment to
decide to conjecture about life's constant battles with oneself?
It's not easy being required to satisfy the needs of all those
around. It's quite uncomfortable being unable to find that
place of comfort when everything around you is in disarray. Where
is the balance? Where is the peace of mind and feeling of complete
absence of mind when you can escape the daily grinds of fear and un-
resolve? Only we have the answers; they are there right in front of
us. They are the unexpected phone calls, laughter in the voice of a
child, the beat of the music playing in the background and the
silence that surrounds us once the tears wash away. Love is around
us. Time, peace and patience surround our ever increasing need for
that love. Believe it, it is there and it will engulf you over and
over again. Faith. Acceptance and encouragement.  It is there for the taking, you just need to reach out your hand and take it.

My thoughts to all of you - is when you meet someone who happens to appear from out-of-the-blue....don't be surprised that it isn't a part of God's plan for you.  We are brought together for a purpose and I urge you to explore that purpose.  Even if the opportunity is solely for the purpose of understanding someone else better, or lending a hand for a moment, or even offering guidance to a stranger.....you have a purpose and you are loved - and it is in God's hands.