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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Create Space Where There Was None.

It’s 2018. I’m ready to implement some changes into my life and our routine. Our overwhelming and demanding schedule has me feeling drained. Something has to change. I am running on empty. I know I am not the best version of myself. So, I started reflecting on what changes I could make to give myself more energy, make my body feel better physically, and accomplish everything on our daily task list. What New Year’s resolution could help with that? I knew that I didn’t want to give anything up on our schedule. Sienna is finally starting to make some significant changes in her physical capabilities and I attribute that to our additional PT sessions at the Children’s Institute. I started to think about how great I feel when I am making time for yoga. I need to make that a priority. I always walk into a yoga class with one goal in mind; to create space where there was none. I repeat this mantra to myself throughout every class. It’s easy to get in your head about petty nonsense, even during yoga. I catch myself clenching muscles, looking in the mirror, criticizing myself. How do I look doing this pose? My inner dialogue goes like this, “I look awful. I’ve let myself go this year. STOP!! Create space where there was none. That’s all you need to do.” Then, I refocus. My mind does wonder, but I always come back to this mantra. It always works for me. It grounds me and gives me a safe, reasonable goal and it forces me to take things as they come with one simple strategy. I started thinking about how I could take this same simple goal and implement it not only physically to my body, but figuratively in my life.

So, what are some areas in my life where I could apply this goal? Well, my blog, for instance…this is my own space to create what I want. I can share my perspective, my family’s experience with a kid with Down syndrome, my life as a stay at home Mom, my experiences and innermost thoughts. I’ve let it slide these past few months and I tried to dig deep and think about why that was. No excuses. Believe me, I’ve got the excuses. It’s easy to make them especially when your life is consumed. But pushing that to the side for a minute, why haven’t I been writing? I enjoy it and it’s been therapeutic. Why had I stopped writing, aside from the I’ve been busy BS? It’s the same reason I lose sight of that mantra during a yoga class. Insecurity. Self involvement. Fear. I’d be lying if I said everyone in my life was supportive about this blog I’ve created. Some people think I share too much and they let me know it. People have made comments about me being too into this Ds thing we live with. For the record, I’ll advocate and share to my heart’s content and if you don’t like it, don’t read it. Some people have just been completely silent about the blog, and that got in my head as well, because like I said I am self involved. That’s not to say I have not had positive feedback as well, but I focus on the negative because that’s what I do. So, the motivation to write dwindled as the inner dialogue got more and more judgmental. I had thought about sitting down and writing my own metoo experience for the blog, but I caught myself asking friends and family if it was going too far, sharing too much. So, I’m making a vow right here and now. No filter. No limits. I’m keeping it simple. I’m going to create space where there was none. I can’t promise I’ll do it every week, but I’m going to try. If I catch myself questioning if I’m sharing too much, too little, how I sound, I’m stopping those thoughts and telling myself to stick to the mantra. Create space where there was none. 

Where else can I apply this goal? Time. Have I mentioned we don’t have much of it? Our days pretty much go like this:

6-7 am The kids wake me up
7 am – 8:45 am Cook the girls their breakfasts. Dress them and get us out the door.
9 – 11 am Take Haley to school. Guzzle caffeine. Get Sienna to whatever therapy we have that day.
11 – 11:45 Get Sienna lunch and get her down for a nap. Go pick up Haley from school.
12-2 pm Make Haley lunch. Do a load of laundry. Shovel crumbs on the counter down my throat. Finally, take a shower.
2 – 4 pm Sienna is up. Feed her and Haley a snack. Start to clean up the crazy house. Figure out dinner and start to make it.

The rest of the day depends on whether or not Jason is traveling. Most of the time, we have errands to run too…food shopping, target runs, Haley’s gymnastics and art classes, doctor’s appointments. But I know I’m not the only one with a crazy schedule. I have to find a way to create space where there was none. I have to force myself to find it. Every day, I’m going to tell myself to create 30 minutes for myself. I have to manage our time more wisely. Do you know what would help with that?

Organization. 2018 is going to be the year I purge. No more holding onto junk. I’m taking the 2018 30 day #declutterlikeamother challenge. This week we have been focusing on bathrooms and closets. You should see all the space I’ve created by tossing old makeup and kids’ bath toys. It feels good. If I have this house more organized, I will get things done more quickly and it will ultimately help with that time dilemma I am dealing with.

What else? Motherhood. Lately, I’ve become so consumed with checklists and Sienna’s therapy goals. I need to take a page from Haley’s book. I’m dedicating more time to playing with the girls. I want to be silly with them. The dishes can wait. The laundry will be there when we’re done. I’m not just finding a craft to do with them to kill time. I’m pretending to be a giant that’s chasing them in the woods. I’m taking the cushions off the couch and pretending the carpet is hot lava that we can’t touch. I’m reading books to them every day, not just at bed time. I’m creating memories, space where there was none.

You get the idea. I don’t know if this mantra of mine will work, but I’m happy to start the year out this way. My big takeaway is that I cannot let fear, insecurity, and self involvement take over. I have to be okay with owning and enjoying this space I’m creating. Thanks for reading.

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