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.

Continue Reading

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.

Continue Reading

Sienna’s Birth Story

I have a hard time talking about this because it brings up so many emotions. When I think back to the day Haley was born, I feel nothing but joy. With Sienna, it’s more complicated than that. I had been having nightmares as the day got closer to Sienna’s birth. I kept thinking something could still go terribly wrong. I asked the OB if there was anything that could happen. She reassured me and told me that we were at the end and the baby looked great. I had 7 ultrasounds and they all showed a perfectly healthy baby. We were days away from the due date. I expressed concern over her lack of movement. They told me everything was fine. I asked if something could come up because we hadn’t done the genetics screening. Her response to that was less reassuring. She said, “If you had concerns, you should have gotten the genetics screening.” I said, “I don’t have concerns. I’m just asking if something could still come up. All my ultrasounds were normal, right?” “Your baby is measuring perfectly and everything looks great. Get some rest and get ready to meet your baby.”

Of course, now I know that my worries were warranted. It’s probable that Sienna wasn’t moving as much because she had Down syndrome and she had low muscle tone. It’s possible she was tired because she had a heart defect. That was another thing that never came up on any 1 of the 7 ultrasounds. When I tell people that I chose not to get a genetics screening, I feel judged. It’s the same puzzled, baffled, look every time I mention it. “Why wouldn’t you get the genetics screening?” Then I end up making that person feel uncomfortable when I tell them I had 4 miscarriages. Even my OB questioned me. The Ultrasound technicians questioned me. They even spent extra time looking for Down syndrome markers. None of them showed up. The truth is that the first trimester screening just looks for markers. Nothing is definitive. And if your markers are high, they want you to have an amniocentesis which has a high incident of miscarriage. I would never have agreed to it. I worried about so much the entire pregnancy and I just wanted to have the most relaxed gestation possible for this baby. I wanted to enjoy the pregnancy.  But when Sienna entered my world and they told us she had Down syndrome, I immediately blamed myself. When I really think about it, I made the decision for us about the genetics screening. I told Jason that I didn’t want the screening and I explained why and he agreed. He never would have argued with me after all I had been through.

The day before I went into labor with Sienna.

The day Sienna was born I woke up and my water had broken. It was wonderful knowing definitively that I was in labor. We called Jason’s parents and they came down to pick up Haley. We left for the hospital giddy. I was slightly emotional saying goodbye to Haley but she was so excited to be a big sister. I couldn’t wait to give her that sibling I had fought so hard for her to have.

When we got to the hospital, everything was very normal. They had to make sure my water had really broken and that I hadn’t just become incontinent. After a few hours, they admitted us. I still wasn’t having contractions so they decided to give me some pitocin to get things moving. As the contractions sped up, so did the pain and I asked for the epidural. Immediately, I felt relief but I also felt dizzy and my blood pressure dropped. The anesthesiologist had to give me a different kind of medication to get my blood pressure up. The baby’s heart rate was all over the place while this was happening.

I felt better but the baby’s heart rate still continued to bounce up and down. I was terrified. The nurses were downplaying it. They were intent on keeping me calm and they were doing a good job. As time passed, I got closer to being dilated and the nurses prepped me for delivery. Labor was fast and she came out in 4 pushes.

When she came out, she wasn’t crying. I looked at her and my first thought was that her head looked a little small and I got worried about microcephaly. My pregnancy took place during the height of the Zika virus. The nurses laughed and said she was fine but they were worried about her color and they ran her over to the UV light. Jason went with her and started to take pictures of her as they measured and weighed her.

My OB was talking to me and she started to ask me if I wanted any more children. My placenta wasn’t coming out on it’s own. It was possible they’d have to do a procedure to remove it and that could potentially lead to my uterus being removed. I knew this was a concern from the Asherman’s syndrome. I said that this was probably it for us but to do everything she could to try to avoid it. A few other doctors rushed in and did an ultrasound. To be honest, Jason and me were both nervous about this. Now looking back, I think we were so worried about me that we didn’t pay attention to what else was going on in the room.

After waiting 30 minutes, my placenta came out. They asked me if I wanted to breastfeed and I said yes. Sienna latched like a champ. She was beautiful. Jason and I gushed about how clueless we had been that she was a girl. We really thought she was a boy. We were both so happy to tell Haley she had a sister, which was what she wanted.

When I finished nursing her, I told the nurses to go get my parents from the waiting room so we could tell them. That’s when everything changed. I suddenly noticed the look on the nurse’s face that had examined Sienna and something was up. She said, “Before we get your parents, can I talk to you for a minute?”.  I knew right then and there. I looked at Sienna and I knew her eyes looked almond shaped. But she was beautiful. The nurse said, “Some of Sienna’s features can be indicative of Down syndrome and we think another doctor should come take a look at her to make the call.” My heart sank. It felt like the walls were closing in on me. I wanted to run and never look back. I wanted to scream. This wasn’t happening. This had to be some sick joke. After all we went through, this couldn’t be happening. We had already been through so much. Why was God punishing me? Hadn’t I been through enough? I immediately couldn’t breathe. The nurses gave me some anti anxiety medication but it did nothing.

Another nurse came into the room. She grabbed my hand and started to tell me about her friend who had a beautiful child with Down syndrome and how much that child had enriched her life. She started to tell me how Pennsylvania was one of the best states in the country for kids with disabilities. Sienna would be approved for medicaid and that would help with medical expenses. I shut down. Her kindness helped me from completely losing it but I wasn’t processing a single word. I asked her if the other nurse could be wrong. She said that it was possible and only the doctor would know for sure. In came the doctor. He could not have been more soul crushing. He examined her and said there was no doubt that she had it and when I asked, “What does that mean?” He started to list everything negative. He said she would have developmental delays. It would take her longer to walk and talk. He said she could have heart problems. She could be more prone to Leukemia. I shut down. Jason was detached. I looked at him and he looked like he was in shock. The doctor left and I cried. The kind nurse grabbed my hand again and said, “This baby is a blessing and she is beautiful.” I asked to hold her again. She was so beautiful. This was my baby and I loved her.

It was that moment that I remembered we still had to tell my parents. They were outside waiting. How was I going to tell them this? I started to cry. The nurse grabbed my hand. I asked her if she could do it. I just couldn’t do it. When they came in and the nurse told them, they both continued to smile and they held her and said she was beautiful and that it didn’t matter. I was so relieved and touched by their reaction.

Now, I look back on this day and I’m sad. I’m sad because Sienna’s birth was one of the saddest days of my life and Haley’s birth was probably the best day of my life. I have guilt. I know now that these feelings and reactions are normal. Imagine one of the best moments of your life snatched away from you. That’s what it felt like when they told me Sienna had Down syndrome.

I’m still very emotional thinking about it. I recently wrote myself a letter on the day I received Sienna’s diagnosis.

To Haley and Sienna’s Mom,
​​

know what you are thinking. Somehow, this is your fault. You pushed for this baby. You fought for this pregnancy. You were scared to death that something would go wrong during labor and it has. You should have just called it a day after the fourth miscarriage.

​You think that you just sentenced your family to something awful. It’s hard to see clearly now through all of the emotions you are processing, but she’s your baby. She is the same baby that has been kicking you for months, doing flips in your belly while you did yoga. This is your baby and she is the baby you are meant to have. You’re the mother God chose for her and you’re going to realize that in time. 
 
I’m not going to sugarcoat this. It’s going to be the toughest year of your life. Get your big girl pants on and prepare to work harder than you ever have. Right now, you’re a good mom to Haley and you’ve done so much to guide and influence her in positive ways. What you are facing with Sienna is going to be your biggest challenge. You are going to grow and evolve in ways that you never dreamed possible. 
 
You’re going to worry about Haley. You’re going to feel like a burden has been placed on her. You’re wrong. You’ve just given Haley the gift of a lifetime. She is going to learn empathy at an early age. She is going to be Sienna’s fierce protector and it’s a role that she will gravitate to all on her own. You will watch the most amazing love and bond grow between the two of them and it will move you. It will make you realize that they are meant to be with each other. 
 
Your marriage is going to face it’s toughest year. You will handle this in different ways. You will feel isolated and alone at times, but that won’t last forever. Realize that you are both doing the best you can. There is no right or wrong way to deal with this. You will both process it at different speeds. Just know that you’ll both get there. Be patient and kind to one another. 
 
Let yourself cry. Let yourself grieve. Don’t feel guilty. You are going to become so strong. You will protect your girls with a fierceness that will move mountains. In addition to being challenged, you will be rewarded. Sienna will change you and that’s a good thing. You will learn to take things as they come. You will appreciate the little things. You’ll stop looking too far ahead and you’ll realize that every day is a gift. You will work hard to help Sienna and it will be gratifying. You will celebrate her accomplishments. She is a warrior. She will surprise everyone. Don’t let the doctors limit her. You will meet amazing doctors but you will meet doctors that don’t see anything but Down syndrome. Trust your instincts. You know your child and you know what’s best for her. 
 
You will be welcomed into an amazing community. It will take you time to feel like you belong there, but you will start to feel like you have another family. You will ask them for advice on some of the biggest obstacles you’ve ever faced. You’ll be rewarded with friendship and love.
 
One day, you’ll wake up and this won’t seem like some big nightmare that you’re recovering from. You’ll stop seeing Down syndrome and you’ll only see your baby. You will think she is perfect in every way. You’ll always be worried about her, but you’ll do everything you can to empower and strengthen her. That’s your job as her mother. 
 
I know right now it seems like life is never going to be the same, but that’s true with every child. It gets better. Motherhood is the hardest and most rewarding job you’ll ever have. ​So, put those big girl pants on and buckle up for one hell of a journey.
I wish I could go back in time with the perspective I have now, so that the day of Sienna’s birth was as joyful as Haley’s had been. No matter what happens, I will always carry that guilt with me. I know it’s normal, but it still doesn’t change my feelings. I wish I could go back and yell at the doctor who painted such a negative story of life with a child with Down syndrome. Some days, I am tempted to walk into the hospital with Sienna in my arms. I want her to wave at him and say hi like she does to every person I walk by in the grocery store. I want to say to him, “You were wrong about this baby.” I want to find the nurse from the day she was born and hug her and thank her. She was right. Sienna is a blessing and she’s beautiful.
Continue Reading