“It will come.” Three simple words meant as encouragement. Meant to give hope. They don’t. In fact, often they are received as a dismissal. As a means of telling me it’s not a big deal. Because I know this phrase is not meant in the way I perceive it, I simply smile and say, “I…
Sleep Perchance to Dream
Last night was one of those nights. Daddy had a meeting so I put all the kids to bed, then laid on the floor doing Facebook until the twins dropped off to sleep, except I dropped off to sleep, too. I know I’m really wiped out when I wake up on the cold floor at…
Living on Borrowed Time
Medical advances are a gift of life. Today, it is no surprise that a baby born with a life-threatening medical condition survives. Yet we wonder about the life expectancy of this new “saved generation”. Are they LIVING ON BORROWED TIME? Don’t worry. Just cherish every moment of every day that we share with them!
Reflections In Spring…We’ve Come A Long Way
How are we doing? It’s on my mind. Not for any particular reason except that spring is around the corner, and this is the kind of thought process I go through each spring. You see, spring is a time of renewal and while others clean, which I might find a way to get my hands…
Waiting. And why it’s not so bad.
Raise your hand if you love to wait! Yeah, me neither. We spend lots of time waiting as parents with special needs kids. Waiting for things like doctor’s visits, referrals, our children’s therapies to take, results of the last lab work-up… For the past week we’ve been waiting with one of our daughters – waiting…
Alone
Sometimes, on those really bad days/weeks/months, I feel so alone. Even though I’m surrounded by friends and my beloved family, I still feel alone. Nobody understands. Nobody gets me. Nobody feels my pain. It sucks. It hurts. I feel so all alone. I’m so glad this isn’t how it always feels…but man it sucks when…
I swear…
I had a good post started. On botox and our next round of treatment with Jillian. However, I am down and out with one of the worst viruses I’ve ever had and I’m putting myself in bed. This will make 3 early bedtimes for me. I am totally hoping and crossing all my appendages that…
Learning her ABC’s
This winter, Precious was seen by a new occupational therapist (OT) after going almost 18 months without seeing one. She had four different OT’s during the first four years of life and they focused on self-care skills like teaching her to put on her shoes, do up her zippers, feed herself and use the toilet….
The “Ick”
We have been part of the “Ick” people. We try SO hard not to get anything. To not be exposed to any others that are sick, have been sick recently, or that have been exposed to sick. I know impossible. But we really do try to stay germ free. Then it HIT and it didn’t…
The Green Monster
The Green Monster is not just the outfield wall at Fenway Park, people! It’s this pit in my stomach. The pit that grows jealous, envious, and resentful sometimes. Sometimes usually means daily. Mostly. Sometimes. (This is the part where I bear my soul and come clean, so please don’t chew me up and spit me…