Lovable Cornbread

Cornbread. You would think that this crumbly quick bread would be a great starter recipe for the novice cook. There aren't that many ingredients and it goes together pretty easily right? Right. Mix, pour, bake, done. Unless you are teenager Megan, in which case you mistake cornstarch for cornmeal.....and you end up with albino cornbread that's bland and rock-like once it cools. My family loves to tell this story. Often. It's one of my many childhood cooking mishaps, which apparently make for good conversation. Anyway, this cornbread is not bland or rock-like. It's good. Really good. Especially if you like your cornbread a little more on the sweet side. This cornbread is also easy to modify and make healthier! My "healthy" changes are in parenthesis.

Golden Sweet Cornbread

adapted from Allrecipes

• 1 cup all-purpose flour
• 1 cup yellow cornmeal
• 1/2 cup white sugar (1/4 cup sugar + 1/4 cup stevia)
• 1 teaspoon + 1 pinch salt
• 3 1/2 teaspoons baking powder
• 1 egg
• 1 cup milk (skim milk)
• 1/2 cup canola oil (3 Tbs. oil + 5 Tbs. unsweetened applesauce)

Directions

1. Preheat oven to 400 degrees F (200 degrees C). Spray or lightly grease a 9 inch round cake pan or muffin tin.
2. In a large bowl, combine flour, cornmeal, sugar, salt and baking powder. Stir in egg, milk and canola oil until well combined. Pour batter into prepared pan.
3. Bake in preheated oven for 20 to 25 minutes for pan, 15 minutes for muffins, or until a toothpick inserted into the center of the loaf comes out clean.

And here is my cute little helper, offering silent encouragement.

Madelyn & Cornelia

In another life, I was considered to be quite the writer. Back then, the words just seemed to flow for me. And yet, I've been staring at my computer screen for the past hour, trying to convey the balls of information that are rolling around in my head. Nothing sounds right. I can't think of an introduction that appropriately leads into what I want to say. And honestly, I'm not sure how my very very small audience will interpret my jumbled thoughts. I'm sure there are those who are exhausted by my posts that revolve around Madelyn. I beg for your patience. This is yet another Madelyn post.

About a month before Madelyn's first birthday, we went to see a genetics doctor at Primary Children's. The physical and developmental problems she had been experiencing were suspicious. She had thus far been diagnosed with developmental delays, cerebral palsy, failure to thrive, profound hearing loss, major visual impairments, and a few other things. It was all too much to be coincidental, like lightning striking twice in the same spot. Or in her case, six or seven times. We knew that there was something wrong, something that Madelyn wasn't going to "get over" or grow out of. The doctor confirmed what we felt: he told me that he was 90% positive that Madelyn has a genetic syndrome called Cornelia de Lange syndrome.

The syndrome is not that common- it occurs once in 10,000 to 30,000 births. CdLS happens when there is a mutation of genes found on Chromosome 5, 10, or X. From what I understand, it's most likely that Madelyn's form of CdLS occurred due to a random mutation on Chromosome 5. This means that her case is moderate to severe, instead of mild. It also means that our future children are not likely to have CdLS. Fortunately, with this diagnosis, we have a better idea of what to expect in our life with Madelyn. For more information about Cornelia de Lange Syndrome, you can check out the CdLS Foundation website.

When we first realized that Madelyn would be permanently disabled, we were devastated, and I was terrified of what life would hold for her and for us. I worried that my ignorance and fear would affect my view of Madelyn. I worried about other people's reaction to her, and whether she would be treated well despite her differences. I worried about how our other children will eventually feel about our life, and especially about how they will feel about the amount of attention and help Madelyn will require. I was in a constant state of worry about things that weren't actually a problem, were outside my control, or might never come to light.

More and more, I am struck by how much we have been blessed. Jason and I have the sweetest, most wonderful child. In fact, she is far more perfect than I could have ever imagined. She is happy, funny, opinionated, and incredibly entertaining. Madelyn has the most delightful smile, and silliest little giggle. She is most certainly not like other children, but I know that Madelyn will always be an incredible source of joy for us. Like my mom says, Madelyn will always be my baby.

I have also been incredibly grateful for the way our family, friends, and even strangers have treated Madelyn. Our families have been so supportive and loving. Jason and I even joke that Madelyn gets so spoiled by the attention that's lavished on her by our families, that when we come home, she goes through withdrawals. Our friends have also been continually kind and concerned about Madelyn. However, I have been most surprised and relieved by strangers' reactions to Madelyn. Sure, we've experienced a fair amount of blatant staring and displays of ignorance, but the more common reactions are curiosity and acceptance. Almost every time we go anywhere- whether it's church, or shopping, or wherever, someone stops me to ask about Madelyn, or to tell me how cute she is. I cannot recall a single instance where a person who asked about Madelyn was not kind. In many instances, these complete strangers are parents of disabled children, and offer great words of comfort and encouragement. More than one person has told me that Madelyn's place in our family is an amazing blessing. I tend to agree with their assessments.

I absolutely love being Madelyn's mother. I have my dream job, and it's wonderful. A lot of my worry has been replaced by excitement for the future- to see what Madelyn will do, and what she will be like. I know she's an incredible person, and her presence in our family will push us closer to our ultimate goal.

In case this is all super sappy, let me assure you: life is still hard. It isn't filled with flowers and butterflies and pure awesomeness. We have our fair share of the smelly, the messy, and the grumpy. Madelyn can be super naughty ( she's pulled out her feeding tube pretty much everyday for the last two weeks, and most of the time, it's deliberate). Madelyn can also be super grumpy. Mommy can be, and often is super grumpy. Like yesterday...at the store, and last Sunday...at Jason. I have also become quite unsympathetic about some things- like mothers crying about their babies getting their shots. I know, I'm horrible, but it's only because I've lost count of how many times Madelyn's been stabbed with a needle, and because I frequently have to pin my child down, and shove a tube up her nose, down her throat, and into her stomach. But I still don't have a good excuse for being unsympathetic.

When it comes right down to it, what I'm saying is this: for the most part, life is good. Furthermore, our life is pretty normal. Yes, we have a ridiculous number of doctor's appointments and therapy visits. But our main concerns? School, money, spending time together, and keeping Madelyn clothed (our child won't stop growing- 90th percentile for height people). Pretty normal stuff. Normal stuff which I hope I start remembering to write about. Oh, and pictures.

Madelyn's Birth Story

*Warning to the squeamish: I'm going to talk about some of the birthing process. It's a little icky. Proceed if you dare.

I've been thinking about Madelyn's birth a lot lately. I feel like most birth stories go pretty much the same: painful contractions, pushing the baby out, and then feeling overjoyed as your new baby is placed gently into your arms. And that is what puts us in a totally different category than most other new parents. Madelyn's first few months of life were pure pain and sadness and frustration. Oh, and a whole lot of waiting, and waiting, and waiting.

I went into spontaneous labor on April 5, 2010, six weeks prior to my due date. I had no idea what was going on. All I knew was that I was in horrendous pain that kept getting worse. I remember thinking, "If this hurts this badly now, real labor will kill me." I went into active, full-out contractions at 11:00 that night, and by about 1:30 am, I was having contractions every five minutes. Finally, after accepting the reality that I was in premature labor, Jason and I drove to our nearby hospital (longest five minutes of my life).

Once I was admitted (by a receptionist who clearly did not believe I was in labor, despite my being unable to sign admittance papers because of crippling contractions), the labor and delivery nurses confirmed that I was indeed in labor, and had actually dialated to seven cm thus far. My water baggie was also bulging, which pretty much neccessitated that Madelyn be delivered immediately instead of stopping the labor. The nurses had an operating room cleaned and prepped in case an emergency C-section was needed. The anesthesiologist was brought in; he quickly placed my IV, and administered a "walking epidural." After the epidural took affect, I was able to relax somewhat (you know, despite being terrified, and in shock, and trembling wildly as a side-effect of the epidural). I was taken into the operating room a half hour later, and began pushing. Jason held my leg so that I would remain bent in half, so he saw the whole thing, despite his original desire to be on the sidelines. Some crazy old nurse held my other leg and got after me if I made any noise while pushing. I spent the first ten or so minutes pushing so that Madelyn would "drop." Then came the actual pushing to get the baby out, which was helped along by the vacuum and some other medical intervention due to Madelyn's dropping heart rate. While I was pushing, I tried to comfort myself with the idea that Madelyn had to be at least five pounds, and that we'd probably get to go home soon. However, as soon as I saw my child (or rather her back), my heart fell: she was the smallest baby I had ever seen. Jason rushed out of the room with our still silent child. I finished the birthing process, and tried not to dissolve into tears as the doctor sewed me up.

I was taken into the same room I started in, to spend my first hour as a mother alone and in shock. I hadn't seen my child's face, my husband was gone, and I felt like I was in a horrible dream. This could not be happening to me. I spent the time in between the nurses' visits sobbing and praying. I asked God why this was happening, what had gone wrong, why we were being punished....I honestly didn't know if Madelyn would live. The delivering doctor came in and told me that Madelyn had a heart murmur, possible water on the brain, and a bunch of other problems that seemed foreign and terrifying. Jason finally came back to my room to tell me what was going on, and to tell me what our child looked like (we had left our camera at home in the rush to get to the hospital). I was then taken up to the NICU to see my daughter for the first time, and to learn more about what was going on. I could hardly tell what Madelyn looked like beneath all of the medical equipment, but she was incredibly small. We left the NICU feeling marginally better.

I was taken back to my mother/baby room, where Jason and I cried and talked until the decent hours of the morning. Then we began to make phone calls to our siblings and a few friends (we had called our parents while I was in labor). I then waited for my parents to come while Jason went back to the NICU and began discussing our daughter in earnest with the NeoNatologist on call. A little after 9 am, my parents and sister arrived. My parents took me up to see Madelyn, and I got to hold her for the first time. She was light as air, and so tiny that I thought I might break her. We were given even more information, and I went back to my room again.

We spent the rest of that day and the next at the hospital. We went to the NICU as much as we could, and my heart was broken every moment I couldn't be there. Actually, it was kind of torturous to be in the mother/baby ward, because I could hear other babies crying, and I watched as babies were wheeled in to their mothers' rooms, and I couldn't have that because my baby wasn't healthy. That ended up being a theme in my life for the next two months- extreme guilt and pain that I was no longer pregnant, even though I was supposed to be; anger towards my body for letting Madelyn down (we've learned since then that Madelyn's premature birth is due to something that my body had no control over). In short, it was a rough time. I've honestly never felt such deep heart-break and pain.

But then, the miracles began to happen. As Madelyn spent more time in the NICU (seven and a half weeks from beginning to end), more tests came back with good results, tubes came off, and Madelyn gained weight. We began to see her sweet little personality emerge past the sleepiness and irritation at being bothered so much. Madelyn went from being 3 lbs. 1 oz., having a bottom that barely covered the palm of my hand, and drowning in diapers the size of a playing card, to being a hefty 6 lbs. and almost too big for preemie clothes. This is not to say that the NICU is a cake walk- I can honestly say that those weeks were some of our most painful, stressful, frustrating, frightening, exhausting, etc. ever. Getting Madelyn out of there was agonizing- I went home every night feeling like a part of me was missing, and terrified that Madelyn was going to stop breathing during the night and that nobody would notice amongst the constant beeping and activity in the NICU.

The day Madelyn came home was rainy, and a little cold, but it was magical. We were finally home together, without nurses, doctors, or the constant beeping. We then began to experience the many of the normal new baby things, and some not-so-normal new baby things. And that seems to be our pattern- some of our life with Madelyn is very normal, but much of it is very abnormal. However, over the course of the last 14 months, we've found that our sweet little girl has brought a few miracles into this world with her: peace and joy, love and happiness. We will never have a "normal" life. Madelyn will always require lots of help, and a ridiculous number of doctor and therapist visits, but she will always be worth everything we've gone through to get her here and to keep her here.

This is what Madelyn looked like when I first saw her:


Later, on the first day, after some equipment had been removed:


To give you an idea of Madelyn's size as a newborn-that's me holding her:


About half-way into our NICU stay:


The day Madelyn came home:

Madelyn

Madelyn was in the hospital last week. That sounds scary, but she was there (at least in theory) so that we could learn how to help her gain weight. Unfortunately, that means a feeding tube. As in, everything she gets is going down a feeding tube. We kind of hate it, in part because we lose one more "normal" aspect of life for our child (being fed orally), and also because having an ng tube shoved up through your nostril, down your esophogus and into your stomach seems rather icky and uncomfortable. But, at the same time, this is not only our best option, it's our only option.

I know people are still wondering why Madelyn is struggling so much. We don't know. We have clues, and teams of doctors are looking into all sorts of possibilities. We have suspicions, and strong signs. Once we know for sure what we are dealing with, we plan on being absolutely upfront and unapologetic about Madelyn's difficulties and needs. We are not ashamed of our daughter in the least. She is wonderful, and smart, and as sweet as can be. When I was pregnant with Madelyn, I thought of her as my "sunshine baby." That sounds silly, I realize, but it describes Madelyn perfectly. She is an absolute ray of light, and Jason and I are in awe that we get to take care of this incredibly special child. We wouldn't change a thing about her.

I also know that there are those who are wondering if Madelyn will catch up or will eventually be like most other children. She will not. Her condition is permanent, and we aren't waiting for her miraculous recovery. This means that, for us, life will always be a little different. But it will be wonderful and happy, even if it includes an abnormally high number of medical bills and more work to accomplish normal things. We have learned though, that miracles don't always include the sudden healing of a child with special needs. The child is the miracle. The ability to still laugh, and enjoy the "new normal," and find the occasional silver lining (my baby still likes to cuddle, and our apartment doesn't need to be baby-proofed yet) are miracles. And the ability to accept whatever comes with faith, peace, and determination is the miracle that happens in our lives everyday.

Yes, sometimes we honestly feel a little picked on, or rather, we feel that Madelyn is pretty picked on. But these things I know: disabilities are a part of our earthly experience. Yeah, God could prevent them. He could prevent the suffering and the pain. But He won't. Not because He doesn't care. I know He cares an infinite amount, and that our child will always be protected and watched over. I know the Savior loves little Madelyn deeply. We feel that love from the other side of the veil constantly. But regardless of that love, we still have to suffer in order to learn and to grow. Suffering is an absolutely necessary part of the refiner's fire. And if there is one thing we are learning throughout this first year of our new life, it is that we are willing go through anything to be able to be with Madelyn, and each other, and all future children after this life. And the Lord is guiding us ever carefully by the hand, step by step.

So I think what I am trying to say is this: Madelyn has had a difficult life thus far, but one day, it'll be okay. Madelyn will eventually be blessed with a perfect body to go with her breathtakingly beautiful spirit. But for now, she's that beautiful golden chrysanthemum that is growing in a dented, old, rusty bucket (even though Madelyn is undeniably cute). But as the gardener said: “I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn’t mind starting in this old pail. It’s just for a little while, until I can put it out in the garden.” This is, of course, pulled from President Monson's talk "Charity Never Faileth."

Until that blessed day when all will be made perfect, we are going to enjoy Madelyn's skinny little legs, her sweet smile, the giggle fits, and all the funny little things that make Madelyn, Madelyn. We love her just the way she is.