I turn my camera off after recording the coach going through the routine for the cheer competition and look back at Sienna. She has melted to the ground and her eyes are puddling with tears. What had I missed? I step towards her and ask her what’s wrong as the tears stream down her face. I try to get her to stand and do the routine with her peers, but her body is like a pile of bricks. She pulls me down to the ground with her. The other kids are staring at us. I scoop her up and she wraps her body around me and hides her tear stained face and fogged up glasses in my shoulder. I walk towards ..read more

Sienna stands on the steps at our swim club, making her happy noises. She wades in and out of the water, giggling and splashing gently. I sit on the steps watching her. The steps are not only a destination for the kids, but also the older adults. This is the spot I usually get trapped into a conversation.  An older woman is walking towards us, staring at Sienna. She sees me assessing her.  “She is beautiful. She is one of God’s children.” I immediately pull my sunglasses down from my head to shade my eyes, so she doesn’t see me roll them.  “Thank you.”  I hate this dance ..read more

The following post has been a year in the making. It doesn’t feel right calling it a blog post, because it’s so much more. It’s my tribute to Sienna’s kindergarten experience, and the year that almost broke me.  Whenever I encountered an acquaintance this year, and they uttered those dreaded words, “How is kindergarten going?” I have answered them honestly, and sometimes that honesty has made people uncomfortable. That’s me though. I tend to overshare, but what I was omitting was just how inadequate I felt next to the moms whose kids were having that typical kindergarten experience. I hid ..read more

This World Down Syndrome Day, I wanted to visually share the challenges we have faced navigating Kindgerten, in spite of the fact that this very capable little girl is ready to learn and soar. Look for an in depth blog post coming soon. You can help by calling your senators and letting them know that children deserve access to an education, and in order to gain that access our government has to be willing to pay home health aides and personal care school aides a fair wage. The post The Kindergarten Predicament appeared first on This Life We Got ..read more

I slam my laptop shut and begin to sob. How did I not see this coming? I am so angry at myself. I took the advocacy classes for this very reason. I should have been prepared. I just didn’t think the fight for inclusion would begin so soon. Sienna and one of her best preschool pals, Ellen. “You might want to consider a different school with a life skills support room. She would be with 11 other kids with disabilities. She would get more one-on-one attention. There are 3 schools in the district with a life skills support room. It’s not around the corner from you, but we would bus her.” These wor ..read more

The night of Sienna’s birth, I remember watching Jason sleep and staring into space, a million thoughts rushing through my head. No one knew yet. It was our family’s information to process and digest. I am ashamed of the worries that raced through my mind. I look back on those anxious thoughts and realize just how far we have come. What thoughts raced through my mind? Can I do this? Will we still be able to go out for weekly Friday dinners? Will we be able to travel? Can I do this? Will we have to leave the city for a different school district? Can we afford to raise a child with Down syndrome ..read more

For the past 11 or so months, I’ve missed the busyness of our lives. I am not going to lie. The first few months of the pandemic were the reprieve I have long desired. I enjoyed the stillness of time spent in the backyard, scavenger hunts on walks, and the hum of virtual school background as our days stretched into months. Then those days became more stressful. I watched Sienna’s development fall behind and Haley’s anxiety escalate. We were all ready to resume our lives. After Jason and I were fully vaccinated, we decided it was time to do just that. Sienna’s preschool opened. We chose to sen ..read more

I stood in your shoes. I stood at the precipice of this life, my emotions engulfed in fear, grief, and uncertainty. I remember the congratulations and the welcomes from our community. I still felt uncertain and then I felt guilt for my uncertainty. I want you to know that everyone entering this unexpected path has felt what you are feeling. We were not sure we could do it, yet here we all are saying congratulations and welcome to you. There is a reason for that. We have the gift of perspective. I promise that you will have that gift someday. You will process this and when you do, you will come ..read more

My phone rings. I immediately run to check caller ID. It’s spam again. Frustrated, I put it down and dive right back into the land of Polly Pockets.  “Where were we?” I say.  “Mommy, you look disappointed again. What’s wrong? That’s the thing about living in quarantine with your neurotypical seven year-old since March. Nothing gets by her. She can tell just by looking at me how tense I am. “Nothing Haley baby. I’m just waiting on an important call.” “About Sienna’s test?” she asks inquisitively. Just then, the phone rings and my caller ID shows our pediatrician. I answer.  “Hi M ..read more

When I was 25, I fractured my spine for the first time. My doctor prescribed painkillers for 3 months and fit me for a back brace. I laid in bed for weeks and did nothing but watch TV. Over the next decade, I continued to break bones. Eventually, I was diagnosed with osteoporosis. I saw a million specialists. No one could determine the reason I continued to break bones. I felt helpless. In between the births of my daughters, I had four miscarriages. Again, the doctors had no answers. It took years to determine why it was happening. Then, came my youngest daughter’s birth. After years of te ..read more