As you can imagine, the next day was full of mixed emotions. People were texting wondering why I hadn’t sent pictures of Sienna. They wanted an update on the delivery. Was everything okay? I didn’t know what to say or how to respond. I wasn’t sure how to tell people. I wanted to focus on the joy, but at the same time I wasn’t ready to act like there hadn’t also been a feeling of loss. I can’t begin to explain how confusing it was for me. I wanted to celebrate Sienna, but I also had this immense feeling of sadness. I was facing more coexisting emotions. I asked my mom to tell most of the family. We told my in laws and they were just as amazing as my parents had been. They were bringing Haley to the hospital that afternoon.
When Haley arrived, she was wearing the big sister t shirt that I had purchased months earlier. She was beaming. She was so unbelievably excited. She came in and gave me the biggest hug. To her, this was the exciting moment she had been dreaming about. She was about to meet her new sibling. It’s amazing how quickly I was able to turn off all feelings of negativity. There isn’t much I wouldn’t do to protect Haley. I was also excited to tell her that she had a little sister. She had her heart so set on it. She was over the moon. She wanted to hold her immediately, but Sienna had been whisked out of the room for yet another test. This was her echocardiogram. They give them to every baby with Down syndrome because congenital heart defects are very common.
Haley was crestfallen that she wasn’t in the room. I pulled the presents out that everyone tells you to get for the older sibling. She is always a sucker for presents so that entertained her for about an hour, but she was starting to lose all of her patience. I kept sending people to look for the nurse. Finally, the nurse came in and said they were still waiting on her echocardiogram. After what seemed like forever, they finally brought her in the room.
Haley climbed up right next to me and reached for her sweet baby sister. When I looked at the pure joy and excitement on her face, something clicked inside of me. Haley had not skipped a beat. She met her sister and she loved her so much. She never wanted to put her down. Her innocence won me over. They were more alike than they were different. She had a sister and they were going to be best friends.
When you have your first baby, everyone tells you that you are going to be blown away by the love you feel for your baby. It’s an indescribable feeling. It overwhelms you. When you have your second baby, everyone tells you that you are going to be blown away by the love between siblings. That’s exactly what happened with Sienna and Haley. They seemed destined for each other.
Haley’s innocence and love filled me with strength and joy. For the first time since I had heard about Sienna’s diagnosis, I felt like things were going to be okay. Haley didn’t see anything different about her sister. Why should I? Little by little, I was getting there.
I finally broke down my walls and started letting people in. I responded to texts. I composed a birth announcement. I thought it was best to rip off the bandaid and let everyone know with a text which explained that while we were surprised about her diagnosis, we were feeling blessed. We had a lot to learn about Down syndrome, but we knew that Sienna was our beautiful rainbow baby. I still couldn’t talk to anyone on the phone yet, not without breaking down. I was okay to text. I asked my best friend from high school to track down the phone number of a mutual acquaintance. It was a friend from high school that had recently had a daughter with Down syndrome. I wanted to talk to her. I talked to my best friend from college. She was the only one I felt really comfortable enough to bare my soul. She had suffered from infertility and miscarriages. She had been to hell and back to have her kids, and she knew every painstaking detail of my journey. It was okay to share my disappointment with her. She was disappointed for me too. We didn’t have to pretend.
The next 24-48 hours spent in the hospital were filled with ups and downs. We soon learned that Sienna had a heart defect, but the cardiologist made it seem like it might close on it’s own. I chose to believe that it would, because I didn’t think I was capable of handling much more. Breastfeeding was beginning to reveal it’s challenges for Sienna. Her low muscle tone was preventing her from latching and she never wanted to wake up. There were times that her body felt lifeless when you picked her up. That was hard. It was much more than a newborn sleeping. Her limbs laid at her sides limply when you picked her up. I was told it was her low muscle tone and that it was common for babies with Down syndrome to sleep 21 hours or more per day for the first couple weeks. Weight gain was a huge challenge in the beginning. I started pumping immediately at the hospital. She was only strong enough for bottles most of the time. This was also hard on me. Breastfeeding had been an instant bonding experience with Haley. I didn’t want to give up that experience with Sienna. So many things had been out of my control. I wasn’t willing to give this one up without a fight. Plus, I was learning that Sienna would benefit a great deal from the oral motor stimulation associated with nursing. She was most likely going to experience speech delays, but this was a way I could help her. I plan on writing a whole other post about the breastfeeding experience. I hope it will help other moms who want to breastfeed. The doctors have been known to tell us rockin moms that babies with Down syndrome cannot breastfeed. They’re wrong.
When we got home from the hospital, the love story between Haley and Sienna continued. Haley couldn’t get enough of her sweet sleepy sister.
I started to wonder about when we should tell Haley about Sienna’s diagnosis. I knew the time wasn’t now, but Haley was a perceptive kid. She was nosy and listened to everything intently. My nickname for her had always been, “Ears”. I didn’t want her to just come up to me randomly one day and say, “Mommy, what is Down syndrome? You are always talking about it.” I also wanted to wait until she was old enough to understand. To the extent that she could understand. I continued to put it off.
One day, when Sienna was about 7 months old, I was grocery shopping with both girls. We were checking out and I noticed that our bag boy had Down syndrome. I smiled when I saw him. My sweet Haley pointed at him and said loudly, “Mommy, he is silly looking”. I froze. I couldn’t believe what she had said. The cashier, bag boy, and woman behind me were all looking at us. Haley had never made a comment about the way someone looked. It was just one of those things, but I wanted to scream at her. She’s just a kid and it was an innocent remark, but it killed me inside. It’s not my finest parenting moment. I yelled at her. I saw the fear in her eyes. She had never seen Mommy so mad. She kept saying that she was sorry. We got home and I went in her room with her and pulled out the books I had hidden in a closet for months now. I had ordered all the children’s books about Down syndrome. I told her that this was an important lesson to learn. God makes people in all different shapes, sizes, colors, chromosomes, but it doesn’t matter. Everybody is special and important and should be respected.
This was one of those isolating moments. I remember putting Haley down for her nap and crying. Is this what Sienna would face in her future? Would she be working one day and contributing to society? Would she face criticism based on her looks? Would she be hurt? It was devastating to think about. I remembered my motto, one day at a time. I decided to post on my support groups. It’s amazing the strength you can gain from other moms that you’ve never met. Some moms had similar stories. Other moms hadn’t told the older siblings about Down syndrome yet, but through my story decided now would be the time. For the record, the books I recommend are, We’ll Paint the Octopus Red and 47 Strings Tessa’s Special Code.
It was a relief once she knew. I didn’t have to tiptoe around the words anymore. Some days, I think she understands what Down syndrome is all about, but mostly she just sees her sister. She wants to help her. She is present for Sienna’s therapy appointments from time to time. She does her exercises with me when the therapists aren’t here. I’ll see her repositioning Sienna’s legs so that they are in the proper position when someone is holding her. I’ll leave them alone for what Haley calls sister time. Every now and then, I will peak in the room and Haley will be helping her to transition into a position the right way just like I do with Sienna. She picks up her toys when she drops them. She grabs the food pouches out of the cabinet and gives them to Sienna when she is crying. She gives up any one of her toys to calm Sienna down. She hugs, sings, cuddles and does just about everything she can to make her sister happy. She does it all on her own. There is a love between them unlike anything I have ever witnessed. No one makes Sienna smile more than Haley. She is her hero. It’s a role Haley thrives in. Somewhere along the way, Haley decided that she was her sister’s protector. Nothing I did made it happen. Haley chose this path all on her own.
Not long after Sienna was born, I began to worry about the burden placed on Haley. We had decided that Sienna was our last baby before she was born. Immediately after Sienna was born, I felt like maybe we should revisit this. I thought it would help Haley to have another sibling when we were gone. This was before I knew all that people with Down syndrome were capable of achieving. I don’t know what the future holds for Sienna, but I know she is capable of greatness. I am putting no limits on her. When Sienna was about four months old, we went to the Down Syndrome Clinic at Children’s Hospital of Pittsburgh. We met with an amazing doctor who could not have been more reassuring about Sienna’s future. He spent over an hour with us addressing every possible concern we had about Sienna’s health. I asked him if he had any advice on when to tell Haley. He mentioned the children’s books but he also told us about his brother who had Down syndrome. His brother was responsible for the person he had become. His brother was the reason he was a doctor. He said that Haley would take this gift and do something special with it. His brother was responsible for who he was and he was grateful for that. It put it all into perspective. He saw his brother’s presence in his life as a gift.
Haley and Sienna’s love story is a mutual one. Sienna is shaping Haley and teaching her about unconditional love. Haley is teaching Sienna new things every day. Sienna knows that her big sister is her protector and that’s a gift for her as well.