The Realization of a Greater Life

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? Can we do this? Will Haley’s life be affected negatively? Will she be pushed out of the spotlight? How will this affect our marriage? Can I do this? Is this my fault? I don’t think I can do this.

Five years later, I not only know I can do this, I am grateful for the ride and our tour guide. Sienna has taken me on a journey of self discovery. Sharing my truth and our story has given me a greater purpose. Sometimes, I question if I share too much. Then I remember reading blogs that same night those questions raced through my mind. I remember the reassurance that came from reading other mother’s stories.

I laugh at those questions now. We do everything we did before Sienna came into our lives. That doesn’t mean things haven’t changed. The changes have made our family better. They have brought us closer. We have slowed down. We place more value on our precious time together. Life isn’t a race and there is no competition. Our society places too much value on being perfect and doing things a certain way. Sienna does things her own way. We have found that we like her way. We love seeing the world from her viewpoint, and as she steers our course, we continue to see things in a beautiful light.

During this journey of self discovery, I have become an advocate. I have learned that life’s greatest joy comes from helping others. I have learned there are people willing to help us, and it’s okay to accept that help. Unfortunately, until something directly affects you, you don’t know what you don’t know.

I didn’t know I needed to become more brave. Sienna has made me push myself out of my comfort zone. I am so grateful for that push, because I don’t think I would have gotten there on my own. If she weren’t in our lives, I would have missed out on so much life has to offer. I would still be seeing things through my self centered lens. Sharing my truth has connected me to some of the greatest human truths – patience, hope, connection, wonder, and finally self discovery.

I have grown. I spend time helping others in the community. I advocate for her rights. I don’t take health care for granted. I take things as they come. I celebrate everything. I laugh more. She makes us all laugh more. I have learned the value of what’s really important. This October, I wanted to express my gratitude for our path. I am grateful to Sienna for giving me a new lens. She has enriched our lives in countless ways. Her presence in my life has liberated me in a way only love can.

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An Open Letter to Kim Kardashian

Dear Kim,

You and I aren’t so different. We are both mothers. We both had to fight hard to conceive and deliver our kids. Like you, I had Asherman’s syndrome. I endured the hysteroscopies and the endless ultrasounds. I went through miscarriages. We both had our struggles, but we both ended up with beautiful children.

Unlike you, I ended up getting an extra surprise on the day of my daughter’s birth. You see, she was born with Down syndrome. I was completely unprepared for her diagnosis. I loved my child fiercely, as only a mother can do, but I struggled. I had to deal with a whole new set of worries in unchartered territory.

I am happy to say that today, I am an advocate for my daughter in every sense of the word. My daughter amazes me. She is brave, determined, and joyful. She has taught my family endless lessons. She is more alike than different. As her mother, I worry. I worry about how the other kids in school will treat her, and how they will perceive her. And my biggest worry of all is that someone someday will call her a “r****d”.

That word is now considered hate speech. Did you know that when you used that word live on social media yesterday? I know you said that you made a mistake. I give the people in my life grace when they use this word. I correct them and explain why it is so hurtful to myself and my daughter. But I give them grace.

However, I do not think I can grant you that same grace. Here is why. You are a public figure. You want the success that comes with being a celebrity, then do better. If you are filming, choose your words carefully. Choose them as carefully as you choose your wardrobe, because words matter.

Some teenager out there that worships you saw that video you posted and thinks it’s cool to use that word now. Who is the victim in all of that? My daughter and her peers. Mother to mother, I am begging you to remove that word from your vocabulary. I would not be the advocate I claim to be if I did not confront you about this. Spread the word to end this word.

Sincerely,

One Pissed Rockin’ Mom

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Full Circle

It may look like an ordinary bench with two cute little girls sitting on it, but to me it’s so much more than that. Today, I found myself coming full circle, to a point in my life that I choose not to think about, often. Hospitals hold so much power over us. Life can begin and end in a hospital. It’s a place that forces us to look at our vulnerability. Sometimes, we have to look back on a time that we were our most vulnerable, in order to see how much we’ve grown. I had that experience today.

 

 

For those of you that don’t live in Pittsburgh, I will try and explain this as simply as possible. Basically, two health insurance providers own this city. They don’t play nice with each other. You either have UPMC insurance and use all of their providers OR you have Highmark insurance and use all of their providers. Well, after a brief respite from UPMC, we now have their insurance again. Today, I had to get an ultrasound to check on some things. I had to revisit a hospital that I have not been back to since having many of my miscarriages. 

I found myself outside with the girls, waiting. As I sat on the bench, I thought about the many times I had sat there, without them. I remember sitting there wondering if there would ever be a “them”? I was here at some of the hardest moments in my life. I also sat here at some of life’s most wonderful moments. All of Haley’s ultrasounds were done here. We had a few scares with her, but she is a fighter and she came out on her due date, with no complications. A little over a year later, I was back here again. I sat here for an hour one afternoon, with my legs carelessly drooped on top of Jason’s lap with the sun shining down on us, in that courtyard. It was a carefree time in our lives. Haley was 1 and a half, and life seemed perfect. The bottom fell out right after that moment in the sunshine. I came here and sat back down, that same afternoon, after being told that the baby had no heartbeat. I sat here trying to decide whether or not to get a D and C.

During some even tougher moments, I found myself back here wondering if Haley would ever be the big sister. I wondered if I was pushing too hard for something that was not meant to be. I remember a cell phone conversation with my best friend, while I sat on this bench. “One day, this will all make sense. You will be holding another baby, and you will know why you had to wait so long. It will all make sense.” I remember it not making sense, even after I had that beautiful baby.

I sat here during my blighted ovum pregnancy, which took weeks to diagnose and several ultrasounds. It was emotional torture. I sat here and prayed before each ultrasound. I prayed that the baby had grown. I sat here after finding out the baby had not grown. I sat here many times, before and after getting blood work. I switched insurance, some time after that and the nightmare memories have since flooded Highmark facilities as well. No place is safe.

Today, I sit here with such perspective. I have my babies. They are life’s greatest gifts, and they were worth the wait. Both of them, and every perfect cell of their bodies are gifts from heaven. They were made from us and given to us, to treasure. I am grateful for their existence, in this beautiful world. I will be brutally honest, and tell you that when Sienna was born, I thought that this perspective would never come. I will even go so far as to tell you that I thought God was cruel. I, now, realize that he was sending me on a journey. I think he could have cut a little bit of time off that journey, but we did arrive at the destination, finally. The destination is not where I had planned on taking us, but I am loving it just the same. #disabilitymomlife #holland

Women are so tough. We fight through emotional and physical pain on a daily basis, without anyone knowing. I think of some of the situations that I worked and mommed through and I know that I am a serious badass. I used to be a pretty big wimp, so I am glad the journey brought me here. That being said, I am tough enough, so I’d be happy if I never see this damn bench again in my whole life.

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