Pregnancy and Newborn Amnesia

My husband and I made a proclamation prior to having our second daughter that this was it for us. We went through so much with our miscarriage journey, and we wanted to put that behind us. After all, kids are expensive and time consuming, AND also rewarding and amazing. I agreed with my husband. I still agree, I think.

Is any woman ever really ready to make that final commitment? I know pregnancy is painful, tiring, and body altering, AND life changing, beautiful, and empowering.

The butterflies in my belly, the baby flips while doing yoga, the feelings that came with growing a life inside of me…..who wants to say goodbye to that? Then, there’s the baby stage….the sweet smells, the endless snuggling, and the bond that comes with nursing. I look at pictures of my sweet girls as newborns and all I want to do is go back in time.

And for us, there’s more to consider. I worry that not giving Haley a typical sibling will put too much pressure on her as she grows up. Will she feel obligated to stay closer to home? Will she make decisions for her family instead of herself? Will we hold her back?

Now, logically, I am aware that this is not a reason to have another child. I also have learned that there are no guarantees. Pregnancy does not always end with a baby. Labor and delivery do not always end with a ‘typical’ baby. After all, you get what you get and you don’t get upset.

I go back and forth about this all the time. Our plan before Sienna was two kids, and we should stick to that plan. Then, I see a pregnant mom or a newborn and my oxytocin memories come flooding back, and I forget all that. I call it pregnancy and newborn amnesia.

Here’s the thing though. Why do we not remember how draining that stage of life can be? How quickly I forget the fact that Sienna didn’t sleep more than 3 hours at a time until she was 11 months old. I was so sleep deprived that I thought I might have a brain tumor. I forget how hard it is being dictated by a baby’s feeding schedule, their helpless cries, and their sleeping (or not sleeping) demands.

We are finally starting to get some freedom. Haley and Sienna can play together now. I can leave them alone for a few minutes and not worry. We are getting out of the house more. My husband and I are dating again. I can have a glass of wine (or four) and not worry about having to breastfeed or pump. My kitchen and living room feel bigger without the swing, the pack n play, and the exersaucer.

I’d be lying if I said I didn’t daydream about those tender moments. Childhood goes way too fast, so for now, I’m going to cling to every stage and enjoy the ride. Each stage brings a new challenge, but so many new rewards. Motherhood is the hardest job out there, but it’s also the most gratifying.

I may not have those newborn snuggles anymore, but they’ve been replaced with hilarious banter between sisters, dance parties to music I never thought I’d tolerate, and nights spent going over homework. I also get 7-8 hours of sleep a night, and I love every second of it.

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Different but Equal Siblings

“Mooooommmmmy!!!! She’s doing it again,” Haley yells while uproariously laughing. I run in the room making sure they are both okay. I turn and see Sienna throwing her toys, while screaming no and ouch. Haley is in a pile of giggles on the floor with her eyes watering. “Haley go to your room. You are not helping,” I yell angrily. She busts out of the room. I turn to Sienna while gently saying no and cleaning up. I try to redirect and not react. She doesn’t stop. I get hit in the head for the fiftieth time that week with a toy. I keep my cool and walk away. I go in Haley’s room. Immediately, I am greeted with frustration, “Mommy, you never yell at her when she does something wrong. Why do you always yell at me when I do something wrong but Sienna never gets in trouble? It’s not fair.”

Do you feel that? It’s a guilt arrow and it got me.

To most people on the outside looking in, this is a normal disagreement among siblings. But most people don’t have one typically developing child and another child with Down syndrome. I need to handle their behaviors and our communication in very different ways, utilizing separate techniques. In the eyes of my five year old, this is not fair. I know she will understand someday, but that day is not today. In her little eyes, I am being unfair. I try to explain, but it’s complicated.

Haley doesn’t know that her brain functions in a way that is different than her sister’s. She doesn’t realize that I cannot lose my temper in front of Sienna. When Sienna sees me being very animated, she gets the reaction she craves. Anger and joy both come in at the same speed and it’s a stimulation that Sienna seeks out. She is craving that reaction, and Haley is the motherland of reactions. She laughs at every bad behavior Sienna initiates. It’s a viscous cycle and one I have to put a stop to now, before it gets worse. How?

One suggestion from a respected psychologist whose book I am currently reading is bribery. He uses some fancy therapy word to describe it and then goes into an explanation about how a paycheck is something you are rewarded with for positive behavior and this is the same thing. Soon enough, I will have an m&m jar on my kitchen counter, and when Haley controls herself and doesn’t laugh after Sienna exhibits a negative behavior, Haley will get an m&m. I know it might seem extreme, but these are the strategies we need to adopt. I am also hoping this helps Haley feel like she is an important part of Sienna’s behavioral discipline. I want to let her play a role in the process. For Haley, being appointed responsibility is a reward.

I believe in arming myself with information in order to help Sienna. The book I mentioned has been very helpful in developing strategies.

Here is an excerpt from that book, Supporting Positive Behavior in Children and Teens with Down Syndrome written by David Stein, Psy.D.

“When a typically developing child learns something new – either by hearing it explained or seeing it in action – her brain processes that information and then “encodes” it by transferring it to longer-term memory. Next, her brain “consolidates” the information, or stores it permanently. The most crucial difference for children with DS is the new information is not transferred into longer-term memory and stored as easily or consistently.”

I find this both fascinating and key to teaching Sienna. I have noticed that it takes Sienna constant repetition in order for her to remember things that Haley instantly remembered. Sienna and I spend time going over first word flashcards daily. We review the big book of first words. We go over new letters on the fridge and in the tub every day. It takes many more repetitive tasks for something to sink in. When I read this excerpt, I was so relieved to understand the differences in the brains of children with DS. I also started to realize that maybe having this one up on information is a blessing. Do you know how many children have behavior issues and parents just spin their wheels trying to determine how to help them? We have an early roadmap on Sienna’s brain.

When we understand the differences in the way our kids with Down syndrome function, we can give them the tools needed to succeed. And when I dig even deeper, isn’t this true with all children? I am sure you have different parenting techniques for each child in your house no matter what their capabilities. 

“We cannot be reluctant to lead and you cannot lead from behind.” -Condoleezza Rice

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Sienna’s First Advocate

If anyone ever wonders how to treat Sienna, they should look no further than her sister.

When Sienna rocked our world with her diagnosis, some of my immediate concerns were in regards to Haley. I never want her to feel like her needs are not important. Those first few months of Sienna’s life were challenging. We had therapists, lactation consultants, and a plethora of specialists coming in and out of our home. Haley happily went along without complaining. She just wanted to hold her sister and love on her.

When Sienna was 6 weeks old, we had her first Early Intervention evaluation. There were 3 therapists, our coordinator, my cousin and myself all making goals for this tiny 6 week old baby. I watched Haley playing by herself in the next room, and I began to cry. No one in the room knew what I was feeling. I looked at this meeting as some great metaphor for the future. I pictured Haley pushed to the side for years through meetings like this. You have to remember that up until now, it had just been Haley and me. She was my world. I thought Sienna’s diagnosis was going to ruin that. I was wrong.

What I soon came to realize was the inherent depth of the sibling bond. Haley was Sienna’s first advocate. She was the first one to accept her, all of her, while us adults still struggled. But what does it mean for the future? Will Haley always feel this deep connection or will she resent her sister? These are actual outcomes from a study done on 822 adults with siblings with Down syndrome. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with Down syndrome; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without Down syndrome. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching. What a gift!

Haley is learning empathy at an early age. The more I watch her grow into this role, the more I realize how inherent it is to her nature. I had the pleasure of watching Haley advocate on behalf of her sister this past weekend. It made my Mom heart sing. I watched her talk to our neighbors about her sister, and her diagnosis. She may not understand the concept of DNA, but she knows that her sister is her best friend. She knows that we will have to fight for her rights, and it is something that she is more than happy to participate in.

I am going to end each of my posts this month with an inspiring quote.

“I raise up my voice not so I can shout, but so that those without a voice can be heard. We cannot succeed when half of us are held back.” – Malala Yousafzai

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