Why I’m Fundraising for World Down Syndrome Day and Why It Matters

Five years ago, I sat in front of my computer feeling scared, confused, and lost. I had just been discharged from the hospital after giving birth to my second son, Alvaro. He was unexpectedly born with Down syndrome.  
I knew very little about Down syndrome. What little I thought I knew filled my heart with fear and sadness.   Questions crowded my waking moments: Where do we go from here? What do we need to know? Would my baby look like me? When would he walk? When would he talk? What kind of other challenges would we have to face? How would I work through the fear and sorrow? How long would I carry the deep guilt I felt for feeling so brokenhearted? How do I come to see the baby with Down syndrome in my arms as the same baby who grew in my womb?

I wanted and needed to connect to other Moms. I needed to see what other babies looked like. I needed to know what other Moms were doing, how they were living or surviving with the news. I needed hope and comfort from someone on the same journ…

Skinned Knees

Its midnight as I sit at my computer typing today's post.

This is officially the last day of Down Syndrome Awareness Month.

Six years ago I didn't know Down Syndrome Awareness Month was even a thing. And as I sit here and reflect on our 5th Down Syndrome Awareness Month I find myself grateful for skinned knees.

I'm sure I sound a bit crazy right about now. What in the world does skinned knees have to do with Down Syndrome Awareness Month? For me, skinned knees means the world. It means joy and ability. It means inclusion and resilience.

Let me explain.

Five years ago I gave birth to a beautiful baby boy. And to be frank, I was scared sh*tless. Scared about what that meant for him. Scared about what that meant for my husband & I. Scared about our future. I had no idea what our future would even look like.

How I wish I could turn back time and sit down with myself and say "Honey there is no need to cry! It's going to be okay. In fact, it's going to be more than o…

Filled to the Brim & Overflowing

I saw an interesting and enlightening demonstration once. Technically the demonstration was performed to illustrate time management and priorities but I have never forgotten it.

A man stood on stage with a glass container. He filled the container with large rocks until it reached the brim. Then he added pebbles. The pebbles, being significantly smaller than the large rocks, dropped into empty spaces and gaps left among the large rocks. The container appeared full. The man then pulled out a bag of sand. He proceeded to pour sand in all the gaps and spaces left from the pebbles. Finally, we all assumed the glass was really full. But the man surprised us once again, by producing a glass of water and pouring the water into the container, until finally the container overflowed. The container was at last truly full.

While this demonstration was meant to illustrate how we should manage our priorities, I think it’s an appropriate depiction of my life.

Today is my 10-year Wedding Anniversary.…

Navigating My PTSD : Back on Track to a Healthier Me

Recently I was driving  mindlessly down the road. I was headed to one location, and without realizing it driving to another.

Has that ever happened to you? You mean to drive towards dinner with a friend after work and absentmindedly start driving home before you realize you're going the wrong way?  Or maybe you are headed to the grocery store, lost in thought, before you realizing you got on the wrong street. Or like I often do, get caught up on a phone conversation and completely miss your intended exit.

I try to remind myself often to focus on what I am doing. To be in the present to prevent such dilemmas. But time and time again I find myself in that very position. Headed to one location and without realizing it, driving towards another.

I would say that my recent discovery of having PTSD and dealing with it in some not great ways was much like this. I was headed towards "moving past" Alvaro's accident. But in reality, I was numbing my anxiety, fear, and pain in wha…

PTSD: A 6 Month Update

It’s been 6 months since Alvaro’s accident.

Six months since we were THISCLOSE from losing him.

Six months since I have counted every day a blessing and have been more grateful than ever to have this child in my life and care.

Interestingly enough, this 6-month mark is when I became aware I was suffering from PTSD.
The shock of the trauma from his accident began to wear off a few weeks after it happened. Unfortunately, a whole new series of stressful and discouraging events immediately followed. This prevented me from being able to stop and breath and slow down. Simply put, I was in survival mode, dealing with one draining situation after another.

Until one day I woke up and wondered how I had arrived at this place again? A place where I lacked self-care and rest. A place where I looked OK on the outside. I smiled and made jokes and told people I was hanging in there. But inside I was drained, dry, and depressed.
On more than one occasion, I would admit the truth. That my soul wa…

When the Wheels Go Round & Round

I sat in the front row of an elementary classroom today, as my son stood at the front with his classmates singing the Wheels on the Bus with corresponding hand motions. I spent nearly every moment of the preschool ceremony willing myself not to the cry tears of joy threatening to spill down my cheeks. I swallowed hard, took deep breaths, and blinked back tears.

When Alvaro was born, and I was told about his une
xpected diagnosis, never did I think I would feel the joy and pride I felt watching my little boy sing the Wheels on the Bus. It felt so “normal”, so typical.  I feared a lot of things when I was told he had Down syndrome. I couldn’t see past my fear and discouragement about what his diagnosis could mean for his future.

And here I sat, watching my son thoroughly enjoying singing one of his favorite songs, as any other preschool student would do.

Some days I am saddened that I can’t fully understand everything he says. He works really hard to learn to say what comes naturally…

My Restless Heart - In Constant Motion

What does one do with a restless heart?

I imagine much can be done with a rested heart. I know when I am rested- I get so much accomplished.

But a restless heart is more like a flitting bird. One that moves from perch to perch before it ever has any chance of settling anywhere.
Can you picture that bird? Can you see it in your mind’s eye? Whistling and moving but never quite stopping any one place for long?

That’s how my heart feels lately. I know I'm generally restless in nature. Anyone who has sat through a movie with me knows this. I don’t sit through movies. I shift and move, I lean and rearrange my positions more times than you can count.

But it’s quite a thing to feel like my heart is restless. It wants to settle. But there are so many things going on it wants to touch, that there is great difficulty perching anywhere for long.

Some days friends, my heart longs to settle in. To find the one passion that will allow it to dig roots and flourish and grow. But there is so much to lov…