Let me start by saying that it may seem an oddity to end 31 for 21 with a post about Zuzu- but really the intention is to show my gratitude for both of the girls and the family that they have made us. Bethany blogged about siblings of children with special needs a while ago and the post stuck with me. As a sibling of a woman with special needs I’m aware of some of the research surrounding the topic of siblings. I’m aware that it’s been said that 80% of the attention in a family with a child with special needs goes to that child. I know it’s important in a family that we celebrate everyone. That in order for us all to continue on our journey together happily we all need to each feel important. That the Quail needs to know what makes her special outside of her Down syndrome and that Zuzu need not feel slighted because of it. We want Down syndrome to not necessarily be what makes our family extraordinary, but rather just an ordinary part of our daily lives.
Part of their daily lives right now is each other. I want to remember this time when the sight of each other brings the biggest grin to their days. I know there will come a time when they might not see each other the same as they do now. Right now their view is wrapped in love and innocence. These are some of my favorite images and memories from the last 20 plus months of the stisters together.
I know that lots of people worry that having a sibling with special needs is a burden to the family. Frankly I worried about just having a second child and how little attention my firstborn would get and how she would suffer from that. I worried about her little fall from being the entire center of our worlds and how she would handle it. And that was long before any diagnosis entered the picture. So I’m sensitive to it. I’ve been looking for it. I hope anyone that reads this and has that worry can have it abated just a tiny bit and begin to picture the good and love and compassion that can be generated because of it. This generation that gets to grow up with a sibling with special needs in their home- they have been blessed with learning a new kind of normal. One that might help to make our world a little more compassionate one day. Maybe a little less judgmental. Maybe one where the child who needs our love and support very much doesn’t have to even fathom that the people that love them best could even think of calling them a burden. We’re all special. We all have needs. We’re all unique. These girls of mine, right now at least; they see the blessing in sharing their days with each other.
1. During my barfy 5 months of early pregnancy Zuzu was insistent on following me into the bathroom while I barfed my daily contents out. She was completely unphased by this and would frequently hold my hair back and pat my back. Occasionally she even brought her snack in to eat while she watched the show and kindly offered me some to fill my now empty belly. What upset her was if I tried to shut the door so she didn’t have to witness it. That was criminal in her mind.
2. During our bedtime routine I would lay on Zuzu’s bed and read her stories. I would ask her about different baby names. She got stuck on the Quail’s real name and would refer to her as Baby Abby.
2. During our bedtime routine she would take a dolly blanket and lay it on my belly and pat it telling Baby Abby to sleep tight.
3. When we came home from the hospital she immediately went to Baby Abby- declared her by her full name: “Baby Abby Abigail Charlotte”. Said, “I love you Baby Abby Abigail Charlotte. ” and kissed her toes as she had been practicing with Gramma Char.
4. She then brought over the welcome home card she and Gramma had made her and tucked it into her carrier.
5. I was pretty nervous about nursing the new baby in front of her. Since she was still nursing I was worried it might create frustration or anger. The very first time though she very politely and quietly, if not woefully sat down across from us and watched with tear-filled doe-eyes as I nursed her little sister and was clear that sissy went first. She was so sweet about it I let her join in and our tandem relationship was born. Thankfully in hind-site I’m grateful for her graciousness in this arena. Because of Zuzu, the Quail was able to have a full breastmilk supply up until 15 months even though nursing was so difficult for her and she was never able to nurse regularly. Without Zuzu’s continued interest in nursing throughout our dry spells in pregnancy and continuing after she was born I might not have been able to have the supply base to continue to provide for her. What a priceless gift.
6. That very first tandem nursing session, Zuzu instinctually reached out to hold the Quail’s hand. They’ve been frequent hand-holders ever since then. In the shopping cart, in the backseat of the car, while watching TV, through the fence at school…I have a photo of their little hands entwined it’s one of my happiest images.
7. Within a couple of days of the Quail’s birth, Zuzu was bursting at the seams to go back to school and relay her change in status to big sister. When she arrived that first day she announced to everyone who she passed by that “Baby Abby Abigail Charlotte is here! She used to live in the hospital but now she lives with us!” She happily posed under the announcement that had been hung up at school for a picture.
8. Bravely one night she announced that she was leaving Momma and Baby Abby’s room as she was getting ready for bed. It broke my heart that she was so accepting of it. It was probably one of the first separations I felt of her and I. Of course, I did what any post-partum, hormonal, sleep deprived momma would do. I told her she was welcome to come back in and sleep with us. We’re still working on correcting that 🙂
9. At the 1 week birthday for the Quail, Zuzu made us all hold hands (baby included) while we sang Happy birthday to her and the a few rounds of Barney’s “I love you.”
10. At an early on playdate the Quail was happily sucking on her Sophie Giraffe teether when another kid decided they wanted a turn with it. As soon as Zuzu heard the high-pitched scream of her sissy she went running to engage in a not-so-friendly tug-of-war round to retrieve it. Generally I don’t condone aggression in the girls, but I admired her instincts this time.
11. I’ve heard from multiple school mommies that their little kids have asked to get their own Baby Abby. I’m fairly certain it’s due to Zuzu’s adoration of her baby sister. It’s always come from kids in her class.
12. M is a hard consonant for the Quail. So it’s no surprise that I’ve yet to hear a regular Mom from her her. On the other hand, she’s managed to nickname Zuzu Ada as an approximation of her real name. It’s surprisingly distinct from Dada and itty-cat.
13. I keep trying to capture on film their giggling together. Sometime in the last 6 months Zuzu has decided that the Quail loves nothing better than to be scared by her. Each time she does it I cringe as Zuzu comes barreling around a corner, stops about 2 inches from the Quail’s nose and hollers, Boo or Butt, or some other random word. I repeatedly am about to reprimand her when I hear the tiniest giggle come from the Quail. And so the sequence gets repeated. Those two seem to get something about each other that’s obviously only meant for them. They both love a silly joke and are equally delighted at the anticipation of it more than the quality of the material
14. About 4 months ago Zuzu started repeatedly announcing she wants another brother and sister for her birthday present. As unwilling as we were to oblige her at the moment I was secretly thrilled that she wanted it.
15. Zuzu doesn’t seem put out by all of the Quail’s therapies. She generally wants to use the time to watch a show or to join in cheering her on. It’s not uncommon to come in and find Zuzu initiating whatever the last activity she saw us working on with the Quail. We’re going to have to be extra watchful come stair-climbing practice.
16. Zuzu’s ability to interpret what the Quail is hollering about.
17. Her interest in signing and teaching her sister signs.
18. Since the Quail was born Zuzu has requested matching outfits. Zuzu has been an independent dresser since about 18 months. Meaning she needed to be the one to choose her outfit or you were in for a debate on the merits of polka-dotted dresses with pockets versus floral-printed skirts with pockets that held her garden rocks more easily. This then translated into her desire to be the one to pick out the Quail’s outfit. It isn’t every day but boy if there are some cute jammies in the Quail’s size, you best figure out a good rationalization as to how the orange in her jammies matches the red in Zuzu’s if you combine it with a yellow headband since red and yellow make orange. And trust me- I only wish I was making up that kind of example.
19. Zuzu’s empathetic aches and fevers that just happen to coincide with the Quails.
20. Zuzu’s insistence that she be picked up first at school so that she can come along to get the Quail. When we go into the Quail’s room she runs to gather up the Quail’s things and holler out a greeting that she’s here.
21. Their matching strawberry blonde locks, sparkling blue eyes, mischievious grins and strangley identical giggles.