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.
I wish I could say that the day you were born was one of the happiest days of my life, but sadly, it was quite the opposite. That has nothing to do with you, and everything to do with me. You see, your mommy was clueless.
When they told us you had Down syndrome, it was a big shock. As they placed you back in my arms, I knew I felt the love that every mother feels for her baby. You were beautiful. The fierceness of the love I felt for you was overwhelming. Our bond was instantaneous, but I was also terrified. What I didn’t know about you or your diagnosis was that we had been given a gift. You were going to teach us about unconditional love, joy in unexpected places, and the tenacity to move forward.
I am so embarrassed about what I thought it meant for us on the day you were born. I pictured a life spent taking care of an invalid. I pictured our vacations and dinners out, ripped away from us. I pictured a life of difficulty. I pictured your sister, who at that point was the center of my world, forever changed and taken away from the spotlight she lived in and adored. Everything I pictured was wrong. I am putting all of this out there in case there is some other mom, laying in a hospital bed right now, wondering if her life is ending. It’s not.
Our life has been changed by you and your diagnosis, but they are welcome changes. We do everything we did, before you came into our lives. We even do some new things, thanks to you. You make vacations better with your smiles, and sass. Oh the sass! Dinners spent out are loud and full of humor, as your dad and I watch your sister and you misbehave. You yell, you laugh, and you throw things (sometimes at her). Your sister and you have a love story that melts my heart each day. You also fight with each other, like all sisters do. Haley has made the spotlight bigger, and you both revel in it. Haley protects you, and it’s a role that she has chosen on her own. Truthfully, I think you might be protecting her soon. You are a feisty little girl.
Today is your birthday, and two years later, I am grateful. I would not change one thing about you. You are tenacious. Every day, I watch you struggle to stand, to walk, and move around. Your muscle tone holds you back from physically moving, but it doesn’t slow down your spirit. I know you will be walking soon enough, but for now, you get where you want to go, through will power. You are a sassy little girl. I thought I knew what sass was with Haley, but Sienna my love, you take it to a whole new level. It’s hard not to laugh when you throw things, when you scream no, and when you slap your sister or me. You also have an incredible heart already. Whenever your sister is upset, you start to cry right alongside her. You are a daredevil. When Dada throws you in the air, your laughter is infectious. You love to go on rides, and it would appear that we have another thrill seeker on our hands. You do not openly give affection away. You make people earn it, and sometimes you make them work really hard (sorry Aunt Kristy). You are a lover of music. You dance and sing all day long. Our house is full of laughter each and every day.
My Sienna Mae, I could and do write a blog on everything I didn’t know, before you were born. I didn’t know that your adult counterparts with Down syndrome were doing such amazing things, like lobbying for their rights, teaching Zumba classes, starring in reality shows, writing books, owning businesses, living independently, and getting married. They are enriching the lives of their friends, family, and the community. Before you came along, I didn’t know what the word advocate meant. I didn’t know about the friendships I would make in this wonderful community. We are grateful that you have introduced us to such amazing people.
We celebrate more, since having you in our lives. We appreciate the little things. When you pulled yourself up to stand, we jumped for joy. When you used your walker for the first time, I cried. I don’t know what the future holds for all of us, but I know that having you in our lives has made us better people. We have more empathy for others. We choose kindness. We have become more political and we have learned how much we will rely on Medicaid during your life. We will always advocate and fight for your rights and others like you. This has made us better citizens. We love bigger. We have learned that love comes in all shapes, sizes, and abilities. We have learned that emotional intelligence is just as important as being smart. We ask for help more, which has introduced us to some wonderful people. We have better friendships, because of you.
On this day, I want to say thank you. Thank you my beautiful, smart, sassy, baby girl, for the gift of you. I am sorry that I didn’t know what a gift you were when you were born, but I will spend the rest of my life telling everyone else what I didn’t know. I love you and everything that makes you, you.
Hello again! Remember, when I said that I was going to be blogging a lot more in 2018? Well, 2018 decided to throw me a few curve balls. That’s okay though, I am rolling with it. I am still trying to create space where there was none. I have so many topics that I am itching to write about right now….how Sienna chose to stop breastfeeding suddenly, the week Haley broke her arm and Sienna got a double ear infection, the fact that Haley starts kindergarten this fall, how I have no idea where we will be living, Sienna’s progress in therapy, etc. The list goes on and on and I promise that I will get to all of them even if it takes me through the end of 2018.
Ultimately, I decided that I cannot let 3/21/18 go by without acknowledging how amazing it was for our family, this year. March 21 is World Down Syndrome Awareness Day, because every person born with Down syndrome has 3 copies of the 21st chromosome. Get it? 3/21? Anyway, in 2017, we were on vacation for our first WDSD. We embraced the silly sock tradition. We rocked them at the pool and at our resort. We hadn’t told Haley about Down syndrome yet. She asked why we were wearing silly socks and I told her that it was silly sock day. We were teetering in this grey area. I was fully in love with my baby, but I was still discovering the implications of her diagnosis. I still had doubts in the back of my head about how our future would look. We weren’t quite ready to completely celebrate and embrace the day, and that’s okay.
If there is another mom out there reading this right now, and you aren’t quite ready to celebrate, I say to you, it’s okay. You will get there when you get there, and you should never pressure or force yourself, if you aren’t ready. I remember beating myself up a little bit about it last year, but my feelings were completely valid.
This year, I was ready and it came naturally. Nothing was forced. I didn’t have to push myself. Sharing Sienna and how amazing her and her fellow buddies with Ds are makes me feel good. Haley knows all about Down syndrome now, and she understands, to the extent that she can understand. She still has questions, but to her, Sienna is just her sister. She’s the same baby she’s been laughing and playing with since she was born. Haley doesn’t care that Sienna isn’t walking or crawling. She doesn’t care that she has to go to therapy 4 times a week. She loves her because she’s her sister.
I asked Haley how she would feel if we read her classmates our favorite book about Down syndrome, and taught them all about Sienna, and how we think she is very special. Her first question was, “Can I stand in front of the class and answer the questions with you?”, because Haley is a diva. I told her she could only answer questions if she knew the answers.
Haley’s preschool embraced us with open hearts. The teachers even had the brilliant idea to have the children decorate their own socks, before we came in. When we came in to read, “47 Strings; Tessa’s Special Code” they all had their silly socks on. It was such a great suggestion by the teachers and a fun way to get the kids involved. I am so grateful to Haley’s preschool. It is the absolute sweetest place in the world.
As soon as we were introduced by the teachers, we had the children’s full attention. They were all taken with Sienna immediately. The teachers asked the kids to welcome Sienna with a cheer. Immediately after their loud welcome, Sienna giggled and yelled her classic hiiiii. We explained why we were there and why they were all wearing their socks that day. We told them about Sienna having Down syndrome and what that might mean. We read the story (which is a fabulous story for little kids to understand Down syndrome) and then answered questions. The book discusses how everyone has a special code that determines what color eyes you have, your hair color, your interests, etc. Everyone has 46 strings in their special code, except people with Down syndrome. They have 47 strings and that just means that they might do things a little differently. I talked a little bit about her muscles, and how they make it hard for her to walk and crawl.
I knew walking into this that there was a possibility that the kids might say something that would hurt my feelings. I thought they might treat Sienna differently. I knew I had to give them grace. Kids have no filter and that is okay, especially when we are talking about this. I want them to ask every question they have, when their little hearts are being shaped. Teaching them about acceptance now will help Sienna in the future. Empathy can be taught. We can’t be afraid to talk to our kids about people being different. You’d be amazed at how much more open minded they can be when they learn these lessons at an early age. Haley comes with me to the Children’s Institute and we have seen some severely disabled children. Haley does not skip a beat. Just this past Monday, she walked right up to a little girl in a wheel chair and asked her if she’d sign her cast. It makes me so proud. She is being exposed to this at a young age and I am grateful for that.
As a mother to a child with a disability, I want other parents to know that you never have to be embarrassed if your kid asks a question about Sienna in front of us. Your kid might say something negative about her appearance in front of me, and that’s okay. Your reaction is the important thing. Create an open dialogue. Don’t hush your child and run away. You are teaching them that Sienna’s disability makes you uncomfortable and we don’t want that. Introduce your kid to Sienna. You and I can explain together. I will give your child and you grace. It takes a village. We all have to do our part.
Back to story time…when I was done reading, the questions came…..”My mom says Sienna will have a hard time learning new things.” This one was a little tough, because truthfully she might, but we don’t know that for sure so my way of responding to this one is….we don’t know what her strengths and weaknesses will be until she starts going to school, but she’ll go to school and do all the same things you will. “Why do some people have Down syndrome?” Great question for a 5 year old!!! I said my standard answer to this one. God makes people in all different shapes and sizes and he loves us all the same. He made Sienna with an extra string. It just means she does things a little differently, but different is okay. “When will she walk?” We don’t know when she will walk but she goes to therapy to help her learn how to use her muscles because they are different than ours. We talked about how one of the kids in school has a sister the same age as Sienna but this sister is walking. Sienna isn’t walking yet, but she is doing a ton of talking. There were lots more questions. Haley even took off Sienna’s orthotics (her idea) and passed them around the room for everyone to see. She stood proudly next to me, calling on her classmates.
After story time was over, it was time to play. Sienna and I stuck around for a while. The children all took turns waiting on Sienna and serving her different play food from their kitchen. They sat next to her, talked to her, hugged her, and giggled with her. It made my heart so incredibly full to see how much love these children had for my sweet baby. They knew she was different, but they didn’t care! If I could freeze them now, I would. I hope this is what the future holds for my sweet Sienna. I hope she grows up in a world full of people that embrace her, and don’t focus on what is different about her. These sweet kids did not care. They saw a happy little baby and they loved her.
It was a wonderful day for all of us. It was great for Haley, because she got to teach her friends about her sister, which made her feel special. It was great for Sienna, because she loves kids and socialization. It was great for me, because it reaffirmed that being her advocate is a gift. It is something I need to continue to embrace.
How else did we celebrate WDSD? I continued my fundraising efforts for the Down Syndrome Diagnosis Network. I am so close to my goal of $3,000. This money will help so many families facing a Down syndrome diagnosis. They have been my lifeline during some of my family’s darkest days. The fellow DSDN moms are my other family. I have learned so many things from them. They are my friends and my cheerleaders. No one gets my journey more than them. I wouldn’t be so passionate about raising money for them if I didn’t truly believe it made a difference. I cannot thank all of you enough for your support with this cause.
AT&T Sports Net was kind enough to donate AMAZING Pirates tickets to raffle off to anyone in Pittsburgh who donated $21 or more. Winners will be announced soon! Huge shout out to Katie Walos for your help with this.
Flynn Construction donated $500, and in addition to that held a fundraiser on 3/21 that raised $375. A huge thank you to all of the Flynn employees that donated to our cause. Rachel Smith, their Human Resources Generalist, was kind enough to take time out of her personal life to help coordinate these ideas and make ribbons to sell. Thank you so much, Rachel! We also couldn’t have made the ribbons if I didn’t have my extremely talented friend, Rebecca Franceschi, to coordinate the craftiness.
We also have another local fundraiser coming up on March 31 (Easter Eve). We will be filling local yards with candy filled eggs, and a note from the Easter Bunny. $25 for 20 eggs and $50 for 40 eggs. We already have 9 houses signed up!!
I have another huge thank you to give to my very dear friend, Diana Rodgers. Not only has her family donated, but she also organized a Matilda Jane party and 20% of the proceeds went to DSDN. Her party got us over $350. She also organized a meal train during one of the toughest times of my mom life. My SPCNS moms are my other mom tribe, and I am so grateful for them.
I have lived in Pittsburgh for 10 years and I have a great network out here. In Philadelphia, I went to an all girls Catholic high school, Nazareth Academy. I have not seen some of these girls in 20 years, but I had dozens of donations to DSDN from my fellow alumnae. Oh dear, my dear NA! I love you ladies!