So, today we had the first parent meeting for moms of children with seizures seen in the Special Care Clinic. The first meeting was a lunch amongst friends in the coffee shop at Children’s. We talked about anything from doctors to venting g-tubes to how far we’re willing to go for a diagnosis of our children. We talked about mini vans and the smell of hospitals.
These three women all came into my life through Jacob. One of them I met at a support group meeting. One of them I met through an article she wrote about being a super-mom that truly hit home. We had an instant connection as we met. One of them I met for the first time today, but we have had steady contact over the last months. They all have kids with special needs. They all blog about it. They all had to completely change their life expectations and outlook on life the day they realized their kids had special needs. They all like life a little bit too much to “only” get wrapped up in their kids’ special needs. They do things outside their kids’ lives despite it being really tough to fit it in. They like to live, they like to laugh.
We’re hoping to expand this support group beyond the four of us, but these are already formed friendships that will hopefully last a life time. They come to visit or sit with your child in the hospital, bring “good” tea bags and chocolate into the PICU, smuggle in a bottle of wine when needed, get you a “back to ICU gift” that is just so much more perfect than a Christmas gift where you happen to be in life.
Tonight, I want to salute these three women for their unconditional love to their children and life itself. There is no pity, there is no wanting another life. There is simply a way of dealing with difficulties in life. Embracing it as possibilities for new challenges and a greater life.
If you want to read their stories go to:
Our little guy is still at home. We were almost back at the doctor's office this afternoon due to a spiking fever, but since he looked otherwise fine we could keep him home. If he spikes a fever tomorrow again, we're back for more labs, but for now, Jacob is sleeping sound in his own bed!
To good friends!