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.
If you would have asked me one year ago if I thought I would be celebrating Down syndrome Awareness Month with the ferocity and appreciation I have today, the answer would have been, “Hell no.” It’s amazing what can happen in a year. So much has changed, especially myself. For any mothers out there still struggling with the diagnosis, hang in there. Be patient and kind to yourself during your journey. I don’t know what the future holds, but I have learned to celebrate each day. Kids grow up way too fast. During Sienna’s first year of life, I chose to live in each moment. We conquered one challenge at a time and that way of thinking has translated into a higher quality of life for all of us. It’s a transition for which I am grateful.
As most of you know, last week I spoke with a group of students studying to become genetic counselors. One of the questions I was asked during their class was, “How have your dreams for your child’s future changed since her diagnosis?” It’s an insightful question and it forced me to dig deep. What dreams do I have for both of my kids and their future?
I thought about how I was feeling while I was pregnant with Sienna. It’s different with your second child. You already are aware of the sense of magic that comes with motherhood. You’re more selfless. You know the sacrifices you are going to have to make, and you’re prepared for them. Before Haley was born, I had dreams about her future. After she arrived, those dreams changed. They’re evolving every day based on what she wants out of life. The truth is her dreams belong to her, not me. All I want for her is happiness in life. I want her to do whatever it is that will bring her that. Whether she wants to be an astronaut, a makeup artist, a mom, an ice cream shop owner, or all of the above like she does now, I am going to give her the tools she needs in order to achieve those dreams.
Is that different for Sienna? I thought and thought on it, and I kept coming back to the same place. It is no different. Her dreams for the future will grow and change with each passing year and I will let her know that she is capable of doing anything. I will give her the tools to accomplish her dreams and I will stand on the sideline cheering her on, advocating for her all along the way. I will fight for both of my girls every day.
If you would have asked me 10 years ago if this is the direction I saw my life going, I would have laughed in your face. Would I be living in Pittsburgh? Ha, fat chance. Philadelphia is the best city in the world. Why would I leave here? Would I have quit my successful career in order to stay home and raise children? Ummmm, have we met before? I love working and I would never give that up. Would I be raising two girls, one with special needs? I can’t do that. I give people so much credit who can, but that’s not me. Also, I am going to be a boy mom. I’m a sports addict. I hate princesses. Well, here I am living this life we got (pun intended) and traveling this unexpected journey and guess what? I am happy. I am blessed. Being a mom to both of these girls enriches my life beyond my wildest dreams. One of my dreams in high school was to become a writer, and here I am pursuing a passion I had long displaced. My girls led me to this place and I am grateful to them for that.
Thank you for reading all of my posts on Facebook and Instagram this past month as we celebrated Down syndrome Awareness month. As we transition into November, I will be getting back to weekly blogging, still sharing stories about this life we got.
When you become a mom for the first time, your life is never the same. No matter how prepared you are, the questions come. Is this how much the baby should be sleeping? Is the baby eating enough? How much weight should the baby be gaining? How many wet diapers should she have a day? Am I doing this right? I remember calling and texting my best friends who were already mothers. Of course, I utilized the internet, but talking to other moms is a rite of passage. My cousin is pregnant right now with her first baby. She texts me with pregnancy questions. I can’t wait to get the text messages and phone calls once her baby arrives. I will be so happy to share my knowledge with her. It’s what we do as women. We support each other.
Before Sienna was born, I was excited to experience the infant stage again. I was going to enjoy the ride, because I wouldn’t be as worried. I wasn’t a first time mom anymore. But like everything with Sienna, what I expected to happen and what actually happened were two very different scenarios.
I’ll never forget how helpless I felt when I got home from the hospital with her. My husband and I were processing Sienna’s diagnosis in different ways and at different speeds. He has always been more introspective. He chooses to digest trauma internally while I seek connection and understanding from others.
I had announced Sienna’s birth and her diagnosis on Facebook days after she was born. I didn’t want to dance around it. I wanted everyone to know. While on the outside it appeared that I was handling everything with smiles and blessed hashtags, the truth is I was terrified. The congratulatory posts littered the thread. “Congratulations. She’s beautiful.” “God chooses special parents for special babies.” Did people really think I could do this? No one knew what I was facing. There was no friend to text with the questions I had. My friends didn’t know how to advise me or what to say. My Mom tried to support me as much as she could, but this was my journey. I felt alone.
What I soon discovered was that I wasn’t alone. The Facebook post announcing Sienna’s birth and diagnosis put the wheels in motion that would connect me to the Down syndrome community. I was soon connected to a local Pittsburgh mom that had a young child with Down syndrome. With that first connection, Pandora’s box opened before my eyes. Before I knew it, I was handed the tools I needed to break free of my isolation.
Within hours of making that first contact, support and understanding found me on Facebook in the form of the Down Syndrome Diagnosis Network or DSDN for short. Their mission statement is simple. You’ve got this and we’ve got you. As I was welcomed into my birth group, I was immediately connected to hundreds of mothers from around the country. As I scrolled down the group’s private page, I realized that the connection I was seeking was right in front of me. This was my new tribe.
“I can’t wake Sienna up to eat. I have tried everything. We’ve done cold wash cloths, a bath, feeding her in only a diaper. Nothing seems to be working. I’m worried. She needs to gain weight. Does anyone have any tips?”
The advice and support followed.
“It will be okay. It gets better. Try expressing breast milk and putting some in her mouth.”
“They’re so sleepy in the beginning. It’s normal. Did you buy a baby scale yet? You can get one on Amazon and it will give you peace of mind. This is the one I recommend. Hang in there, Mom.”
“Does she have a heart condition? There’s another group for heart mammas that is really helpful.”
“Do you know our kids have a separate growth chart? Here’s a link to it. Show your pediatrician.”
Every day I had a new concern, and every time I posted something I was rewarded with support, love, and knowledge. What issues did we face…..when should we start early intervention, what therapies were the most helpful, breastfeeding struggles, constipation, thyroid concerns, chronic respiratory infections, etc. The questions didn’t stop as Sienna progressed out of her newborn stage. I still find myself having concerns and questions, and there are moms in my group who are a few months ahead of me on this journey and they are armed with information.
This past weekend, I finally had the chance to meet some of the women from my tribe as we convened in Chicago for the annual Rockin Mom Retreat. My birth group is not the only one. Every year there are new babies born and new groups are started. There are thousands of moms in our community. It all began because one amazing mom wanted to create support for new mothers. This Rockin Mom is Jen Jacobs and she is an example of what we as women can create when we choose to unite and lift each other up.
I was nervous to venture to Chicago on my own. I was leaving the girls, something I had never done before. While I knew these women from behind the screen of my computer, I had not come face to face with them and I was uncertain about what to expect. I had a safety net in my friend, Beth. She was a fellow Rockin Mom, but we also went to high school together. While we were not close in high school, simply because we ran in different circles, we were immediately reconnected through the births of our daughters. Beth is 6 months ahead of me on her journey and her wisdom and advice have been steadfast since the day Sienna was born. I was thrilled to get the opportunity to unite in person and face this weekend together. This was me the morning of the retreat heading to the airport.
When I arrived at the hotel, a sea of rockin moms filled the lobby. I looked around the room to see moms sporting unicorn gear (something too hard to explain but it is our mascot of sorts), moms hugging each other, some crying, some laughing, and everyone smiling. Emotions were high and there was an intangible feeling of kinship permeating the air. Every person I saw greeted me with warmth. As Beth and I stood in line to get our welcome packets, we immediately began connecting with other moms. Beth and I are in different birth groups so we had varying connections, but there is an overwhelming sense of family among everyone.
Friday night was our first glimpse into what the retreat would look and feel like. We decided to check out the exhibits first, not knowing what they would entail. As I turned the corner, I saw tables with exhibits from organizations that had the resources to empower me as Sienna’s advocate. Julia’s Way was a nonprofit group that had encouraged me in my breastfeeding journey. They were there passing out resources. GiGi’s Playhouse was a nonprofit that opened Down syndrome achievement centers around the country. We do not have one close to us here in Pittsburgh, but there was information on how to raise money to open a GiGi’s. Signing Time was there with resources about learning ASL and how to incorporate signing into your daily life. There were authors there as well. Mardra Sikora was there sharing copies of Black Day: The Monster Rock Band, a book that she had cowritten with her very successful, inspiring adult son with Down syndrome, Marcus Sikora. Mardra also cowrote The Parent’s Guide to Down Syndrome with Jen Jacobs. This book quickly became the bible in my house during the beginning of our journey. There were many other inspirational organizations there, but these were the ones that stood out to me personally.
After the exhibits, it was time for a reception dinner. My table had women from all over, including a mom who had ventured all the way from England to be a part of this experience. There was a veteran at my table, a mom who had been at the retreat before and had raised thousands of dollars this year, because she believed so much in the experience. Her family was from Texas and they were currently misplaced from their flooded home but she still felt the need to be at this retreat. That’s how meaningful the experience had been. We shared pictures of our children. We discussed their strengths and weaknesses. I learned some therapy techniques that I had not heard of prior to this. One mom even shared a video with me and allowed me to send it to my physical therapist to see if we could look into it for Sienna.
The connection as mothers was instantaneous. We all have one thing in common. We would do anything for our kids and we want to empower each other on our journeys. Do you know how rare that is in this day in age? I had never really thought about it, but I have been gifted with something very special. Sienna is enriching my life. Had she not been born with Down syndrome, I would never have experienced something this special. The sense of family in the Down syndrome community is rewarding and fulfilling. I’m not saying this path we are on is an easy one, but this is one of the beautiful aspects of this life.
After dinner, Jen Jacobs introduced us to our keynote speaker, Rachel Coleman, who is the creator of Signing Time. If you have never heard of Signing Time, it’s a wonderful educational children’s program that teaches kids signs using music and imagery. I expected this talk to be about sign language. While that was related to Rachel’s message, her story was about so much more than that. As she shared her experiences as a mother of 2 children with special needs, the room erupted into tears and camaraderie. I thought about trying to summarize what she did and the emotions she brought out in us, but it’s impossible. Either it’s impossible or I’m just not that great of a writer, but I know my limits. I was so inspired by what she said. There have been so many times over the past year that I have had an internal victim dialogue with myself. Why me? Why us? After hearing her message, I’m going to try to stop doing that. Everyone has their own struggles in life. Life is hard. Everyone’s life is hard. I don’t own the rights to hardship.
She sang this song and there was not a dry eye in the house. I was ugly crying, Kim Kardashian like ugly crying.
If you don’t listen to the song, here are the lyrics that brought out my ugly crying.
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly Or is it now my role to simply believe? You’re just one of those mysteries That may never be solved in time But you do — you do — you shine And Sammy will do what Sammy will do when Sammy is ready to do it
And just to really hammer the ugly girl crying point home….
I strongly suggest looking up Rachel Coleman’s story and reading it from her perspective, because I cannot possibly do it justice. She captivated us for 90 minutes and I could have listened to her talk for 90 more. I was spellbound.
And as if that wasn’t enough crying, Mardra Sikora shared a letter she wrote to herself about her son, Marcus titled, When He Grows Up. Here is a link to it.
Mardra’s presence and her letter were truly uplifting. I’d be lying if I didn’t admit that I always worry about the future. Sienna has taught me to be present in each day and not to look too far ahead. I have no idea what her future has in store, just like I have no idea what Haley’s future has in store for her. Seeing Mardra and the way she speaks about her son makes me realize how much my daughters are both capable of achieving. It’s something that room full of women needed to hear.
When Mardra was done, Jen gave us all charm bracelets. We would be receiving various meaningful charms throughout the weekend. I was absolutely blown away by the thought and detail that went into planning this weekend. Jen and the women who put this together truly wanted to lift us up. As Jen was wrapping up the night, her phone started to receive a FaceTime call. She let out a shriek over the microphone as her phone was ringing. She turned her phone on all of us and said that it was the cast of Born This Way. It was a beautiful way to finish up the evening. Don’t get me wrong. That wasn’t the end of the evening. Beth and me made our way to the bar and rocked out with our fellow moms. That part of the evening is something I won’t be sharing on my blog, because some things need to be just mine.
The next day I met more women from my birth group. I hugged familiar faces and shared in the experience with them. We were inspired more by Nancy Gianni, the founder of GiGi’s Playhouse. She is another example of what a mother’s love can accomplish. She truly wanted a place for her daughter to be supported and thrive. Because of her, these Down syndrome achievement centers are all over the country and more are popping up. I am very interested in seeking information about opening one in Pittsburgh. The Pittsburgh Ds community is incredibly supportive. I really feel that a playhouse would flourish here and so would our children, but that’s another blog for another day.
One of the best portions of the weekend, for me personally, was the breakout session. We all could choose which session we wanted to attend. I chose to attend the writing/blogging session hosted by Mardra. She armed us with information and inspiration. I met other moms that enjoyed writing. We all shared our goals and offered support and resources to each other. Again, this was another example of more women lifting each other up.
After the break out sessions, we all worked on service projects. We heard from two moms whose children fought the Leukemia battle. Moms facing similar circumstances stood up as we cheered them on. More tears. When your child receives a cancer diagnosis, Down syndrome really seems minimal. A cancer coalition is in the works and we created bags for these families and wrote supportive notes to include. We also put together welcome packets for new families in the Ds community. I remember receiving one shortly after Sienna was born.
The rest of the day involved some pampering, tips on how to take care of ourselves, and lots of group photos.
We wrapped up our day at Joe’s Live for some stand up comedy and an 80s hair band. I made more connections with moms over beer and laughter. I don’t remember a lot from the evening, but I know I had fun.
I thought I was all cried out until I got home and a package from my mom was waiting. She had purchased an Alex and Ani bracelet. The inscription read, “Since ancient times, sea-travelers have journeyed to unexplored territories, answering the call of the unknown. Their discoveries are the stuff of legends and their adventures mapped the world as we know it. Like the fearless explorers who ventured off the beaten path, lose yourself to the will of the journey, and follow the divine accidents that steer you to treasures untold.” Sienna is a divine accident and I cannot wait to see what treasures she has in store for all of us.