May 30, 2020
hope
December 18, 2018
Is that Time of the Year Again…
Is that time of the year again… the time filled with Christmas songs and glittery trees. It’s a time to be hopeful, to enjoy, to be more open and loving. I asked my mom the other day if she put the Christmas tree up yet… she said the time for...
November 19, 2018
Our Life Does Not Fit in a Box
I remember vividly being pregnant with my first baby, Alex. Finally my dream of becoming a mom was coming true. I waited an elated 9 months for his arrival, and on the day after he was due we found out he had died in utero. He was stillborn 2 days...
August 23, 2018
Blog Quotes
If there was one thing I’d want everyone to know it’s to please be aware that parents of special kids, especially those with lethal conditions, are hurting. Badly. So, when you see a parent pushing a child in a wheelchair at the grocery store or at Target, send them a...
June 29, 2018
Blog Quotes
Yet, here we are. And I still have some dwindling hope against all odds, because it’s hard to hope when your child pushes against a very strong current. My hopes and dreams I have for my child die a little more each day as I watch him struggle to just...
April 8, 2018
While a Condition May Be Rare, Hope Should Never Be
Having hope sometimes is a gigantic challenge. A challenge so unsourmantable that it leaves you in tears and gives you sleepless nights. You cry. You scream. You fall asleep in tears. But then you wake up, dust yourself off and move forward, one day at a time. One hour at...
March 25, 2018
Blog Quotes
Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me...
November 21, 2017
The Hard Work of Being Hopeful
Society as a whole is filled with nice people. I met a ton of these kind people, whose heart is filled with kindness and generosity. But I don’t live in a bubble. I know some people are cruel. I know there is hate in this world. I know there is racism,...
October 5, 2017
Blog Quotes
Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet....
February 8, 2017
Inner Strength
Nicky’s inner strength is something I deeply admire. There are times that he still surprises me with his wit, the way he thinks and the way he handles things. He’s such a loving, deeply interesting boy for those that care enough and are lucky enough to get to know him. He...
November 12, 2016
Perseverance
I’ve been kind of “out of it” the past several days since the election. The day that followed I was in a daze. I cried and I couldn’t stop. The man that made fun of a disabled reporter was now president. What was I going to tell my disabled son?...
September 2, 2016
Living in Fear?
It seems to me that every time I turn on the news lately there is someone telling me I should fear something. I ought to fear this, be angry at that and hate the other. I also noticed that the people that buy into this way of thinking are extremely...
March 29, 2016
Unpredictable
When I was a 15 years old, in late 1979, I started a diary that changed my life. I was a very shy teenager, I had friends, but I was neither popular, nor confident, so I used this medium to vent in good ways and bad ways and it helped...
March 23, 2016
Hope Against Hope
I was speaking to a dear relative of mine a few weeks ago, and after I told her about Nicky’s antibodies issues that very well might prevent any cure that comes his way because his body will automatically reject it by “fighting” the new collagen that’s introduced, she asked me quite...