Hey Cinderella

Maybe it's because of all of the recent royal wedding hype. Or maybe it's because my son has decided that he loves the Disney princess movies. Yes, you read that right. Much to his daddy's dismay, Henry has become infatuated with Sleeping Beauty, Snow White and The Little Mermaid. In defense of his gender identity, he does like the parts with the dragons and other various villains best, but he also doesn't turn away when the princesses don pretty dresses and begin singing of true love. Whatever the cause, I have had a song that I liked when I was younger stuck in my head for the past few weeks.

We believed in fairy tales that day
I watched your father give you away
Your aim was true when the pink bouquet
Fell right into my hands

We danced for hours and we drank champagne
You screamed and laughed when I got up and sang
And then you rode away in a white Mustang
To your castle in the sand

Through the years and the kids and the jobs
And the dreams that lost their way
Do you ever stop and wonder
Do you ever just wanna say

Hey hey, Cinderella, what's the story all about

I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

We're older but no more the wise
We've learned the art of compromise
Sometimes we laugh, sometimes we cry
And sometimes we just break down

We're good now 'cause we have to be
Come to terms with our vanity
Sometimes we still curse gravity
When no one is around

Yeah, our dolls gather dust in the corner of the attic
And bicycles rust in the rain
Still we walk in that fabled shadow
Sometimes we call her name

Hey hey, Cinderella, what's the story all about
I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

(Suzy Bogguss "Hey Cinderella")

I am willing to concede that more than likely, the real reason I began thinking about this song again recently is that I have been feeling very un-Cinderella-like lately. As I watched coverage of the beautiful royal wedding, and as I have watched the Disney movies with Henry, I have found myself scoffing and doing more eye rolling than I have since I was thirteen. It's not the notion of true love. I have never been more sure of true love in my life, and the fact that I have definitely found it. I tell Jason everyday that if he wanted to leave, no one, including me, would blame him. He puts up with so much, and he does it with a positive attitude and unwavering faith. No, it's the idea of the fairy-tale life, the happily ever after, that bothers me.

My life now is about as far from a fairy tale as you can get. It could almost be a spoof of a fairy tale. I sometimes feel like I wake up and hear a voice laughingly saying "Maggie, this is your life. The anti-fairy-tale. Enjoy." Other times, I think of Jack Nicholson's famous line, "What if this is as good as it gets?"

Take the following pictures for example. When I was pregnant with Camille, this is not exactly what I pictured her room, or the rest of our house, to look like. We have begun adding more and more equipment as Camille has developed more and more issues.

Suction Machine

Pulse ox, decompressors, medications

Feeding pump and IV pole

Oxygen Compressor

Stander

And as I type this, I am sitting in a hospital room with Camille, listening to monitors beep and nurses chat with one another out in the hall. This is our second hospitalization this week. Last week at this time, we sat in yet another hospital room in yet another hospital, listening to our daughter struggle to breathe.

Camille has recently begun to have more difficulties that her doctors are still trying to sort out. She had to be put on supplemental oxygen at night because her oxygen levels were dropping too low during sleep. Then, her oxygen levels started dropping even when she was awake. Her heart rate, which has famously dropped very low since she was a few months old, is now dropping lower than ever. A recent echo of her heart showed that her heart muscle appears to be weakening, but no one is sure why, or is willing to concede that this is the cause of her recent issues. Camille has also had GI problems again, after several good months where things had seemed to have settled down GI-wise. She has begun to have increased retching and increased drainage from her g-button site. She has also been choking on her own secretions, and now has to be suctioned frequently. In addition, she has had some unexplained swelling in her abdomen and other parts of her body.

For the time being, we are stuck in what I like to call the "hospital black hole". You come in, and you never know when you are going to get back out. It always seems like we will be here forever. I am struggling to fight the Negative Nancy and Debbie Downer parts of me who want to scream and cry and crawl into a hole and never come out.

That shoe that fit when I was 21 definitely does not fit me now. In fact, it will never fit again.

And if I allow myself to take a deep breath, I realize, that's okay. It is. Deep down, I don't want a fairy tale life because then it wouldn't be mine. A fairy tale life does not include a child with many health needs. It does not include hospital stays and suction machines and oxygen compressors. And while I would give anything for Camille to be healthy, she isn't. She is who she is, but she is mine. She is a part of my imperfect life, a life I am choosing everyday to see as blessed no matter what crazy or difficult thing might be happening.

And I am hoping, and praying desperately, that as I make this conscious choice to see my life in this manner, I will one day wake up to this instead.

"Maggie, this is your life. And isn't it just so good. In fact, it's pretty much as good as it gets."

Ketchup Day

When I was in elementary school, Fridays would often be called "catch up days". "Catch up days" were the days in which we were not given any new lessons, but instead got to "catch up" on any work on which we were behind. In my 8 year old mind, I always imagined a huge bottle of ketchup when I thought about Fridays. I was hearing "ketchup day" instead of "catch up day" even though I knew that "ketchup days" were for catching up. I thought of this a few months ago when my sweet Henry told me that he "loved me to pizzas". I have been telling him since he was born that I "love him to pieces", and I guess his sweet mind was imagining me loving him to pizzas. In any case, I definitely know it is time for a "ketchup day". Actually, it is way past time, but I won't go there.

I must admit that this attempt at a "ketchup day" is slightly overwhelming. So much has happened, but I'll try not to bore you with too many details. Camille is now seeing 9 specialists at Cooks: neurology, endocrinology, gastroenterology, opthamology, cardiology, surgery, pain management, pulmonology, and palliative care. She's added pain management, pulmonology and palliative care in the past few months. This does not include the genetics teams we see, or her pediatrician. It's quite insane, but it's kind of become normal to us. The other day, as I was coordinating all of her appointments, I had the thought that people might look at this insanity and think that I had Munchausen by Proxy Syndrome (the disorder in which caregivers exaggerate or fabricate illnesses for their child in order to gain attention or sympathy). I shared this thought with our pediatrician, who promptly waved me off and said, "Oh no. No one thinks that. I mean, if you had a normal looking child someone might think that, but..." He trailed off there. Yes, I know. Open mouth, insert foot. Since I have eaten my foot on so many occasions in the past, I let it slide. At least his comment took care of my worry about others thinking I have MBPS!

The big things that have happened in the past few months are as follows. In January, Camille had surgery to have a fundo placement (the stomach is wrapped around the esophagus to prevent vomiting). The surgery has been successful in preventing vomiting, which is good because her excessive vomiting had become extremely difficult. She also had a muscle biopsy done during the same hospital stay. The muscle biopsy was to check for mitochondrial disorders, which is the last thing that the various genetics teams can think of to test for right now. Camille has many symptoms of mitochondrial problems: failure to thrive, feeding problems, vomiting, developmental delay, white matter atrophy, etc. However, the Whitt Luck struck again, and the muscle biopsy was deemed useless. The sample got stuck in Indianapolis while on its way to New York to be tested. Therefore, it had thawed by the time it actually reached the lab in New York, and could not be used. We are now debating if we want to do another one or not. It's that constant tension we have about if it is worth putting Camille through yet another procedure just so we can possibly have an answer to her condition. It's such a tough call.

Also during this same January hospital stay, Camille had another MRI of her brain. It showed that there had been very little change since the last MRI 5 months before, which would be good news if her disease had not progressed much in the past few months. However, our neurologist believes that the reason we did not see much progression is because there was little progression left to be seen. He showed us her brain scans, which was really hard on us because we could then see what he was talking about. Camille now has very little white matter left in her brain. There was so much white matter atrophy from her first MRI (which was normal) to her second MRI that there is just now very little white matter left at all. We sat down and had a long talk with our neurologist about what all this means, particularly what it means for Camille's future. He said that he believes she has a white matter disease, but he is unsure which one. About 50% of white matter diseases do not have names at this time. He said that what he does know is that she has a genetic, progressive disease that is affecting her white matter. He is unsure what that means for her future, but he does not believe that she will make much developmental progress from here, and her life expectancy will likely be greatly shortened. This was obviously extremely hard to hear, even though we have pretty much heard it before. I think that our neurologist actually coming out and saying these things, coupled with actually seeing with our own eyes the progression of her disease on her brain scans, was very hard for us. We are really trying hard not to focus too much on any of that since no one really knows what will happen. We continue just to focus on Camille.

In focusing on Camille, we've come to the conclusion that our biggest desire for her is that she have as happy a life as possible. We want her to be comfortable, and we want her to be pain-free. Because Camille was still having increased irritability, and still seeming so uncomfortable nearly all of the time, our neurologist referred us to a pain management doctor at Cooks. She is absolutely wonderful, and has since been working with us on making sure Camille is more comfortable. Apparently, children with neurological conditions such as Camille's, often feel things differently due to their hyperactive nervous systems. In this way, Camille could be feeling intense pain for something that a typically-functioning child might not feel pain for. Camille is now on a high-powered pain medication, and it does seem to be helping. We feel such an immense amount of relief knowing that she is more comfortable. There is nothing worse than feeling like your child is living a life of such suffering.

Camille's neurologist and pain management doctors then recommended that we go ahead and begin palliative care for Camille. Palliative care is care for those with life-threatening conditions. We met with the team in February, and absolutely loved them as well. They were unbelievably kind and compassionate, and were dedicated to helping us give Camille the best care possible. We had to talk about many hard things at this appointment, such as hospice care in the future, but we are grateful that team will be there to help walk us through these difficult situations as they arise.

In recent weeks, Camille has battled a staph infection on her fundo incision site and pneumonia, but she has pulled through like a trooper, and has been feeling pretty good the past few days. We continue just to "keep on keeping on". (This is my go-to response when someone asks how we are doing. It may be a cliche, but it is the perfect way to describe our lives right now). And yes, some days it is harder than others to "keep on keeping on". Some days the multiple weekly doctors appointments, the multiple weekly therapy sessions, the 6 times per day medication administering, the g-tube feeds, the suctioning, the breathing treatments, the waking up in the night to your baby choking and struggling to breathe--sometimes that is all too much. But I am constantly reminding myself that Camille is worth all of this and more.

I'll leave you with a funny story. I was in HEB the other day, and was getting the usual stares from people. Then a woman who had been staring at us walked up and said, "Does she have what my son has?" I was very taken aback by this odd question, and immediately thought to myself, "I seriously doubt it, lady, considering that she apparently has what no one else in the world has!" Out loud I said, "Um..." The woman then went on to say "You know, the lazy eye! My son has one too!" At this point, I was laughing hysterically in my head and thinking, "Ha! That's actually one thing she doesn't have!" Out loud I said, "No she doesn't have one of those! Have a great day!"

Oh boy! The things people say! Sometimes it drives me crazy, but once again, Camille is worth it. No matter how many stares we get, or how many people give us the "I-feel-so-very-sorry-for-you" look, we don't mind. Again, Camille is worth it!

After all, we sure do love her to pizzas.