From The Heart

Find links to posts about my personal thoughts and feelings on 
being a mom to two kids with intense medical needs.

Morning Fantasy - A Mother's Dream Come True
I was cleaning out my garage and found a journal with exactly one entry in it dated June 29, 2004. It hit me like a ton of bricks because while I haven’t thought about this particular fantasy in a while, it still has a very strong hold on my heart. Here’s a piece of it:

Facing Your Fears
When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t!

Life And Death - Deciding Whether Or Not To Terminate A Pregnancy
When we were pregnant with my son, the 20-week sonogram showed an abnormality in his brain ventricles. They were larger than normal and on top of that, they were not even so one was larger than the other. I remember being hit with the same sensation one gets when they do a full belly-flop into the pool. My ears were ringing and I thought I would vomit through all the sobs. 

Handprints On The TV
We reached another milestone today. Handprints on the TV screen. I’ve been unknowingly waiting for this one and I couldn’t be more excited than if the boy had recited the alphabet today at 10 months old!

A Mom Missing Out On Her Milestones - Children With Disabilities
These were all things I would be told when I would get sad aboutmy daughter being disabled. She can’t sit, walk, talk, feed herself or transfer herself from one spot to another. She will never go to sleepovers, drive, graduate from high school, or get married. Please don’t say ‘you never know’ because yes, it’s true, miracles do happen and I am a woman of faith but as things are right now, this is reality.

Keeping My Joy When Family Life is Difficult
I have been thinking a lot about joy lately. JOY. That’s not a word used very often today. We talk about being happy or good. “Yeah, I’m good.” But joyous? Doesn’t the word ‘joyous’ evoke something different inside you? When I think about how it is to be ‘joyous’ I feel like it’s something I really REALLY want; like it’s more than just being happy or content or fulfilled. 

A Growing Girl - Be Careful What You Wish For
About 4 years ago I went to this event put together by a church I used to attend. They had a breakdancing competition with a live DJ and everything. I thought it would be a cool thing to bring my daughter to because there would be music (which she loves) and other kids and new people and I thought she’d like to see the breakers do their tricks. 

Vanity & Botox
I have a certain amount of vanity for my daughter. Okay, a tremendous amount! She’s got a beautiful face, gorgeous hair and a skin tone that the New Jersey Tan Mom would commit second degree murder for. She’s bright and funny and loves her family. 

A Little Girl's Thoughts and Dreams
I've often wondered what my daughter's thoughts look like. You can read a little about her here. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger and works similarly to web pages)? Or are they flashes of images just randomly popping up...

Today it is hitting me that I am part of another community I never asked to be in. My beautiful son-shine looks absolutely perfect but he is not. Not medically, anyway. He has PIDD. Primary Immunodeficiency Disease.

Sweaty Endeavor = Family Fun??
Sometimes I feel like a hermit. Do you know how many family gatherings, birthday parties and dinner invitations I have missed because I just could not get The Girl into the home where the event was taking place? In some cases, even if I could get her IN, once there it would be such a tight space that having her in her wheelchair would be impossible. 

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