Kristen, Director of Development for Smith-Kingsmore Syndrome Foundation, and a mom in the US, writes the blog on this site. After 15 years of questions and no answers, her son Jack finally got a diagnosis of Smith-Kingsmore syndrome. She writes this blog to help special needs families know they are not alone.
Please also check out Patsy’s blog. Patsy is a mom living in the UK. Her son Archie was also diagnosed with Smith-Kingsmore syndrome after years of not knowing. Patsy started sharing about their journey back in 2011, and writes about her family’s struggles and triumphs.
Nazira is another mom living in the US, and Vice President of the Board of Smith-Kingsmore Syndrome Foundation. Nazira writes the Beautiful Journey, a blog about her amazing family, and the boy who teaches her every day what it is to be a fighter, a warrior, to be brave and to persevere.
Family Support Blog - Smith-Kingsmore Syndrome
What’s the Big Deal Anyway? When You’re Afraid You’re Being Too Demanding.
Some thoughts on micro-barriers. “Change does not roll on the wheels of inevitability, but comes through continuous struggle.” (Martin Luther King Jr.) A teacher friend of mine told me this story about waiting in line…
Feeling Stuck? A Different Way To Handle Monotonous Repetition
A bathroom meditation. Have you ever just had one of those days where you ask yourself, What just happened? You’re exhausted, but have nothing really tangible to show for your efforts that day. Because
The moment you realize your child is different
It’s painful, isn’t it? That moment you realize your child is different. You aren’t ready to admit to anyone—least of all yourself—that something’s not right. You tell yourself, Everyone develops differently. You tell yourself,
The trouble with “Welcome to Holland”
I feel conflicted about “Welcome to Holland.” It’s an essay I’ve been gifted a time or two over the years by well-intentioned organizations. Depending on the day, I love or despise the work. “Welcome
A Different Type Of Grief
The Shock Has this ever happened to you? I was going about my normal business—I ran to the grocery store to pick up a few items we were low on, including diaper rash ointment.
When Life Comes At You Through A Windshield
It had been an uneventful December morning… until the school bus hit my car. So I’m sitting at the stop sign, waiting my turn to exit our housing development. Jack was buckled into the
The Life You Didn’t Choose: Navigating The Terrain Of A New Normal (Part II)
The Aftermath. “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an
The Life You Didn’t Choose: Navigating The Terrain Of A New Normal (Part I)
When events leave you no other choice. When your world collapses, nothing seems to matter. Basic hygiene becomes an accomplishment, instead of the prelude to accomplishments. You wonder how early is too early to
Coping with Grief
My thoughts on prayers. “You and everyone else has given me their prayers. These prayers don’t seem to be working at all!” My older, very outspoken neighbor said this to me yesterday when I
Adversity’s Syllabus
Those who have a ‘why’ to live, can bear with almost any ‘how.’ Viktor Frankl “Why does everything I do as a parent feel so impossibly hard?” I sobbed as I posed this question
Scary Bad Feelings Are Part Of The Package
Confronting our darkness brings fear down to size. “If we forbid ourselves to talk negatively about something, we block the awareness of grievances that need an airing as a prelude to dealing with them.”
