The Ballard Five

 

 
A couple of days ago I picked up the girls from Wanda’s** house after work and she had this funny/awesome story to tell me.

All the kids were playing in the living room because they were putting in new floors in the play room. Evelyn was on the floor scooting around and getting into things and her shirt was raised up leaving her back exposed. Lilly noticed and nonchalantly said, “Evelyn, your spina bifida is showing.” She didn’t say it in a hurtful, teasing way. She was just being matter-of-fact in a  “your bra strap is showing” type of way. You know, helping a sister out. Evelyn has been going there for 6 months and I’m sure this isn’t the first time the other kids have seen her back, but it was the first time they noticed it was different. It paved the way for them to have a conversation about people having differences, and what spina bifida really was. There were some kids that wanted to know if Evelyn would be able to walk, and Wanda told them that she would–that it might be different than how you or I walk, and she could even need braces or a walker, but that she would walk. Sophie then added, “And if Evelyn needs a wheelchair, then we’ll bring it to Wanda’s!” And just like that, the conversation was done and they all went about their business again. I bring this story up to show a few things.

1. Evelyn has the MOST incredible support system! From doctors, to friends, to extended family, to her two biggest fans, Sophie and Lilly–we’re all cheering her on!

2. Differences really don’t matter to kids. Race, disabilities, religious differences, ACCEPTANCE…that’s all learned behavior. We’re not born treating people badly because they are different. We are taught that. But we can also be taught to accept each other.

3. Tact is an art. Lilly doesn’t have much but she’s 3, so we’ve got time to work on that one.

**Wanda is my AMAZING aunt and Evelyn’s Godmother. She has been watching my kids since Sophie was 8 weeks old. She is fantastic with the girls and I honestly couldn’t think of anyone better to watch them all day. Not even myself, because she could run circles around me in the patience department. Seriously…she has a gift! Wanda wears many hats. She is my therapist sometimes. She entertains, she cooks, she teaches, does arts and crafts, and she helps with Evelyn’s physical therapy, too! From day one, she has not shied away from any of the extra care that Evelyn needs and has been right there as a cheerleader and an advocate for her. We love our Wanda!

 

 
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I was having a difficult time getting Lilly to sleep in her bed the other night so I decided to lay down with her. We chatted a little and she started to doze off. I got up and leaned over to kiss her and said, “Get some rest, little one.” Her eyes opened wide, and she pointed at Sophie’s bed and said, “Mama, the big one is already asleep.” Oh, to just live in her head for a few minutes!

We recently acquired a new cat. And by acquired, I mean that my sister’s (Melissa’s) cat had kittens and the girls badgered me about keeping one until I said yes. This makes two cats for us…both outside cats. The first important thing you should do when you get a new pet is to name it. My girls have an unusual knack for naming things. They insist that each and every living thing in our house have a first AND middle name. We also have to address them as their first AND middle name, but not the humans in our house. They do not get the same courtesy. Our dog’s name is Dottie Puddin’, our first cat is Poppy Cat, and we once had a fish named Jumping Wanda. The little kitten we got is a calico, so naturally, they wanted to name her Sheriff Callie. With a little persuasion, we settled on Callie Cupcake. Isn’t she cute? (the cat, too.)

We were out on the porch feeding all of our critters, and this conversation happened.
Lilly: Mama, is Callie Cupcake a girl kitty or a boy kitty?
Me: She’s a girl.
Lilly: When is she gonna make her nest?
Me: Her nest? Honey, cats don’t make a nest.
Sophie: Well then where is she going to lay her eggs?
Me: Kitties don’t lay eggs. Besides, we’re gonna have her fixed so she can’t have more kitties.
Lilly and Sophie: WHY???
Me: Because we don’t need a bunch of kitties running around here. Two is plenty.
Sophie: Well I have an idea. If we let Callie Cupcake have some kitties, we can just give them back to Mimi.
Me: I like the way you think!

Mimi, IF we don’t get Callie Cupcake to the vet to be spayed before she finds a boyfriend, then don’t be surprised if you find a box of kitty eggs on your porch one morning.

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Making some macaroni and cheese the other day, Sophie was watching me and asking about all the ingredients and then she came to the cheese.

Sophie: Mama, why do you have cheese out?
Me: Because it’s mac-n-CHEESE.
Sophie: But why do you put it in there?
Me: Because mac-n-CHEESE requires that you put CHEESE in it.
Sophie: Oooooh! Because if you don’t put cheese in it, you just have mac-n!

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Walter was telling Sophie and Lilly about a Cirque du Soleil show that we saw before they were born and was having a hard time explaining exactly what these artists can do. So, like any good parent, he showed them a video. He had told them that the artist can do anything. While they were watching the video, they seemed mesmerized by it and were especially intrigued by the body contortionists. Lilly was in the floor trying her hand at some of it when Sophie asked Walter, “Daddy, you said they can do anything?” Walter said, “They sure can! Look at all that neat stuff they’re doing.” Sophie watched a minute more then said, “But can they bale hay, Daddy?” Touché, Sophie…touché!

It has been a busy few weeks at the Ballard house! We have finished up dance until the fall, we finish t-ball tonight, and we had a week of vacation bible school. There has been a couple of birthday parties, and one Minor League Baseball game in there as well.  Lots of running, but lots of fun. Of course, the girls haven’t disappointed in the entertainment department…

Bible school was in the evenings and this year, I stayed with Lilly in her 2-3 year old class and let Sophie go on to the 4-5 year old class by herself. They got snacks every night and Lilly wanted to save one of hers for the ride home every night. Sophie was supposed to remember to save one of hers too, but one night she didn’t. Lilly had kept a HUGE rice crispy treat for the trip home that night. When we got in the van, and Sophie realized that she had not saved anything she started to cry. I asked Lilly if she would mind sharing her cookie but she didn’t want to. So, trying to build on that night’s lesson, I asked Lilly if Jesus would want her to share her cookie or eat it all in front of Sophie while she cried. Lilly looked me straight in the eye and said, “Mama, Jesus wants me to eat this whole cookie!” How do you argue with Jesus? Well, after some negotiating, we decided to do what mama wanted, and we split the cookie 70/30 with the larger half going to Lilly. She sure drives a hard bargain!

Sophie has been very interested in God, Heaven, and death lately, and so she’s asking some of the hard questions. We try not to get into a lot of detail because she worries about everything, so we leave the part out about Hell, we don’t talk about mama or daddy dying, etc. The other day I overheard this conversation that she had with my mom:

Sophie: Nana, I will go to Heaven because I believe in God.
Nana: That’s good, Sophie! You have to believe in God and be a good girl, too.
Sophie: You have to be good to get into Heaven? If you’re not good, then when you die you have to stay here?
Nana: Yes, but you have nothing to worry about. You are a good girl.
Sophie: But what if you’re bad?
Nana: Well only the REALLY bad people have to stay here. Like if they kill somebody or steal something…
Sophie: Oooooh! So I will still get to go to Heaven even if I sneak a little.

Evelyn has been doing great, too! She is the happiest baby EVER! She just rides along and goes where we go and never fusses about any of it. She can say “dada”, “mama” and “bye-bye”. I think she says “hi” sometimes, too. She has reached ‘expert’ level at sitting up on her own, and has started to army crawl forward to things! Take that, Spina Bifida! We are starting to get things organized for the Walk-N-Roll in October. It’s a walk sponsored by the Spina Bifida Association to help raise funds and awareness for those affected by Spina Bifida. We are pretty excited to be involved with this organization and hope to have one of the largest teams at the walk! More information to come when we get things set in stone.

To summarize this past week…

Lilly has made up a new (very useful) word/concept. Lasterday. It’s like yesterday, but can refer to anything that has every happened before today.

Sophie was caught saying two bad things and one hilarious thing this week. Although, if I’m completely honest with you, the bad things were also hilarious. Bad thing number one: “Lilly, quit dicking around!” We have since changed that to “dilly-dally-ing around”. Bad thing number two: It rhymes with a yellow web-footed farm animal. I heard it. My dad heard it. We looked at each other and I chose to pretend it didn’t happen. Hilarious thing: Sung to the tune of R. Kelly’s “I Believe I Can Fly” Sophie belted out, “I Believe I Can Fly! I Believe I’m a Chicken Wing!”

We had brussels sprouts with dinner on Wednesday night. I had not said one thing about them but was watching Lilly. She was eating around them and finally said, “Mama…them are not scary. I will eat them.” And then she proceeded to do so. (Win!)

As I was emptying out four vases of dying flowers from the dance recital, Sophie came into the kitchen. I was gagging as the nasty water was pouring down the drain, and chasing it with bleach. Sophie asked what I was doing and before I could answer, she got close enough to smell it and said, “UGH! Why is there fart water in those vases?”

Evelyn turned 7 months old and mastered sitting-up and peek-a-boo this week!

Never a dull moment.

   
 

I’m a little late on writing anything this week but it has been a hectic few days around here. Sophie and Lilly both had their dance recital Saturday and Sunday so that took up the whole weekend. Then we started t-ball tonight. They did awesome at both! This was Sophie’s third recital so she’s a seasoned pro at the tender age of 4, and Lilly was…Lilly! It was her first recital and she definitely dances to beat of her own drum–one of the things I love most about her. I’ll let the pictures tell the story. 

       

You should NEVER EVER have to tell your 4 year old daughter to get her 6 month old sister out of a Full Nelson. Ever. Especially on Mother’s Day. There’s a whole other level of patience expected on Mother’s Day and something like that will surely put you to the test. I think I passed.  Happy Mother’s Day to all the mamas out there!

Dear Mom,

You may not be a part of the Ballard five, but I want you to know that you play a LARGE role! There are so many ways you are integrated into our lives each and every day. You see, you taught me how to be a mom and so your methods and ways have trickled down to my family. From something as mundane as the way I paint my nails to the way I can make a kick-ass dinner for my family, it all has a piece of you in it. I clean my house like you clean yours, I rock my babies the same way you rocked us and sometimes I even talk like you. Yes, I admit, I hear your words coming out of my mouth all the time. When we were growing up, you advocated for us, accepted our quirks, disciplined us and loved us. Oh, how you loved us (and still do)! I’ve been watching and learning for 33 years and even though I no longer live in your house, I continue to learn from you. I suspect I always will because there are many things I’ve yet to master that you do so effortlessly.

I know that this is going to be a hard Mother’s Day for you. It is your first without your own mother. I can’t begin to imagine the void you are going to feel all day while everyone around you celebrates.I will be celebrating YOU but also grieving with you. You don’t know this but the GREATEST lesson you have taught me was in her final time here. You spent the last few years of Grandma’s life helping her and caring for her in such a selfless way, and I want you to know that it did not go unnoticed by me. You sacrificed, sleep, work, time with your children, time with your grandchildren, your own health, and I’m sure your sanity to a degree, all to make her last years the best they could be. She didn’t want to go to a nursing home, and you (with the help of some beloved care takers and a few of your siblings) were able to make that happen for her. The weekends you spent at her house caring for her so that she could stay in her own home were long, inconvenient, and sometimes boring. And I know you wouldn’t trade a thing for that time spent with her. You have apologized to me before for all of the things you missed with my girls in the past few years. Don’t be sorry. Rest assured that the lessons they learned from seeing you take care of Grandma, DOING THE RIGHT THING, far surpasses any barbeque, ball game, or movie night you might have missed. You were doing exactly what you needed to be doing. You were taking care of the woman who raised you. She gave birth to you, sacrificed for you, fed you, clothed you, did without for you, lost sleep for you, ached when you ached, cried when you were hurt, rocked you to sleep, and was your biggest fan…she was there for you no matter what, and in the end, you returned that favor for her. What a blessing for you to be able to give her that gift, and more importantly, that you recognized this and stepped up to the plate, when turning away or ignoring her cries would have been an easier road to take.

I don’t know if you see it or not, but you are more like her than you think. She was kind, generous, and loved her children, grandchildren and great-grandchildren beyond measure. She was a “fire-cracker”, was independent and didn’t let people push her around either. All wonderful qualities, in an even more wonderful woman that I am honored to call “Grandma”. Sophie, Lilly and Evelyn get those qualities and more in you, Nana. Grandma may be gone this year, but she lives on in you. She will live on in me, and she will live on in the three little girls who say a “special prayer” for “Old Grandma” every night. Happy Mother’s Day, Mom! Thanks for teaching me life’s greatest lesson. (And to cook…that has certainly come in handy).

Two things that Sophie said this weekend made me realize that she is wise beyond her years.

In the car, after a political ad played on the radio…
Sophie: Mama, did Obama REALLY kill Kentucky jobs?
Me: Um, yes…in a way he did.
Sophie: That is NOT NICE to do that. I think he needs to be put in a time out.
Me: Yes, ma’am! A time out might do the whole country some good!
(Sophie will be running for president in 2048, and she’s got my vote!)

On the obvious design flaw of the ZippySacks… (If you haven’t seen these, it’s basically a fitted sheet with the top sheet zipping up around the sides. It’s a sleeping bag that attaches to the bed and is marketed with the same gusto as the Pillow Pet, Snuggie, and DreamLites.)
Sophie: That is a really bad idea.
Me: What’s that?
Sophie: Those ZippySacks. They shouldn’t make those.
Me: What’s wrong with them?
Sophie: It’s just gonna make kids pee in the bed. If you’re zipped up in your bed and have to go, you will probably have an accident trying to get out.
Me: Good point!
Sophie: It doesn’t matter though…it says you have to be 18 to call and I’m only 4.

When a three-year-old says, “Watch what I can do,” it is the equivalent of an adult saying, “Here, hold my beer!” Yesterday, I was sitting in Evelyn’s room working on her therapies. Lilly decided to join us and was watching every move we made. She was showing me that SHE could do everything Evelyn could.

Then she hopped up and said, “Mama, watch what I can do! Take a picture!” Now, let me explain that Lilly ALWAYS wants me to take a picture…of her hair, of her stuffed animal, of her lunch. She’s constantly asking me to take them, and for the most part, they are not anything out of the ordinary. I had my phone right beside me, so I queued up the camera and told her to go for it. Then this happened…

At first, this may look like I just caught her in the middle of a roll, and that’s what I THOUGHT she was going to do. But no. She flipped over onto her head and then STAYED THIS WAY for at least three seconds before she made a pretty decent dismount. She stood up all wild-eyed with her blonde hair sticking up all over her head, and squealed, “DID YOU SEE THAT?!?!”

Good! She was just as surprised as me, because I was in utter shock at what I had just witnessed. If it wasn’t for the picture, no one else would believe me. She was so proud of herself, and I was impressed to say the least. I always say we have our own circus at home. I had no idea that we had an acrobat among all the clowns.

Sitting in Evelyn’s room tonight and rocking her to sleep, I had some time to just think. This week has been emotionally draining for me because our family has reached the end of an era. The Ballard five will never be the Ballard six. It was made final on Wednesday and I know that I am holding my last baby. While this is definitely the right choice for our family, it makes me sad to know that I will never feel those little kicks from the inside again, that the next time I hold a newborn it won’t be mine, and that as we celebrate Evelyn’s ‘firsts’, we’ll also be saying goodbye to her ‘lasts’. Just this week she has started to draw her legs up in an attempt to crawl, and I have also bagged up the last newborn and 0-3 month clothes to leave our house forever. It’s bittersweet.

I found myself reminiscing the birth of all three of my girls tonight. Each one was so very different, much like their personalities. Evelyn’s was the most different. The birth of your child is one of the best days of your life and I have three of those days to reflect on, but Evelyn’s arrival also marks one of the worst days of my life. To experience your highest high and your lowest low simultaneously is not easy to explain, but I’ll try.

My pregnancy went smoothly with Evelyn. Much more smoothly than the other two as a matter of fact. For starters, there was no morning sickness or bed rest, and other than being rounder and more tired than usual it was a piece of cake. We decided not to find out what we were having with her, so her gender was a surprise up until the moment she was born. (I highly recommend this. It was so much fun not knowing!) Everything about my third pregnancy was textbook. Routine. Perfect.

On October 26th, I was 38 weeks and 4 days pregnant, labor was in full swing, and we anxiously awaited the arrival of our newest little bundle of joy. Everyone in the delivery room (the doctor, nurses, Walter and I) were anticipating this baby’s arrival and making last minute guesses as to what it was going to be. The nurses were excited because they said they rarely got real surprises anymore. It was such a fun experience (despite the laboring part) to not know what we were having.

Then the moment arrived. Evelyn Rosa, our third daughter, was born at 11:32 am, weighing 7lbs 4oz. She cried out and I waited. Waited to hear someone, ANYONE say, “It’s a Boy/It’s a Girl!” The room was buzzing with nurses and doctors trying to finish up so that we could begin enjoying our newest arrival. I asked more than once, “What is it?” before a nurse finally told us that we had another daughter. They swaddled her up, handed her to me and I started to fall in love all over again. She was gorgeous just like her sisters. She was chubby. She had a little bit of dark hair, and was so alert right from the beginning. The thing I remember most about the first time I saw her was the way her brow was wrinkled up making her look kind of grumpy.

What no one told me until about an hour later was that our sweet, new, ‘perfect’ bundle was not perfect. She had something wrong with her that had not been detected with any of the prenatal care or ultrasounds. When they finally broke the news to us, that they would be sending her to a children’s hospital 60 miles away and that I had to stay behind, to say I was devastated is an understatement. There are no words to describe how I felt, knowing that not only was my baby NOT okay, but that I couldn’t be with her when she needed me.

Five short hours after Evelyn was born I had to say good bye to her and watched as they wheeled her out to an ambulance. I had to place all the trust and faith I have in this world to perfect strangers. My mom and sister stayed with me and Walter went to Louisville to be with Evelyn. It was a long and lonely night even with them there and the nurses coming to check on me. I felt like part of me was missing. Part of me WAS missing. Luckily, I was allowed to leave the hospital the next morning. Having given birth just 22 hours prior, it was an uncomfortable trip to Louisville to say the least but I had her back in my arms and that was all that mattered.

Later that day, x-rays and an MRI confirmed the diagnosis that we were not prepared for. Evelyn was born with Spina Bifida–Lipomyelomeningocele, to be exact. We later learned that this is not the worst kind of Spina Bifida but not the best. It IS a fairly rare form. We were completely blind-sided by the diagnosis and searched desperately for answers. Why? Why did she have it? What did I do wrong during pregnancy? How did it go undetected for 9 months? Aren’t prenatal vitamins supposed to prevent Spina Bifida? The answer is no. Not always. The scary thing about pregnancy is that you can do EVERYTHING right and STILL have a baby with a birth defect. I’m proof.

Evelyn’s first few days were a whirlwind of medical professionals, specialists, education, and even some social workers. She is almost 6 months old now and has already endured more procedures and tests than most people will in a lifetime. She has a urologist, a neurosurgeon, and a physical therapy team. This, in addition to all of the usual well-baby visits and common childhood illnesses. She has so many appointments and therapies that I’ve seriously considered hiring a secretary to help me keep it all straight. She is not without problems but we work hard, SO HARD, to do the best we can for her. We have joined organizations, continue educating ourselves about Spina Bifida, and are beginning to be involved in the Spina Bifida community. We have met so many amazing individuals and have so much support from friends and family (and plenty of strangers) that it can be overwhelming at times! We are grateful for each and every one of these special people.

She is hitting her milestones on time with the help of some early intervention and daily physical therapy. The bladder/kidney issues she faces are manageable at this point and we’re taking a watch-and-wait approach to spinal surgery. Despite all this SHE IS PERFECT. Perfect in every sense of the word. She has challenged us, tested our faith, and inspired us. The strength that this little one has is mind-blowing! She may look different from other babies and she may end up doing things differently than other children one day but that’s okay. Having a child who is different changes you. It makes you appreciate the small things in life, celebrate the little victories, and realize that ‘perfect’ comes in many forms. She is exactly what our family needed and she perfectly completes us.