It’s been about two months since I’ve updated our blog. My sister told me that in order to have a blog, you actually have to blog. A concept not conducive to our situation or my emotions the past few months. I’ve had this written for a few weeks, but have just decided to share it.
As it turns out, Hailey’s super suit didn’t become a favorite new article of clothing and it definitely was not like putting her shoes on by the third day. It was more like placing her in a body cast as she refused to move, walk or do anything but stand in the middle of the floor and cry after it was on. You can probably imagine the turmoil that was created when we had to start putting it on in the morning and how it affected our day. Actually, you probably can’t. It was rather awful and still tears at my heart when she begs us not to put it on.
It took two whole weeks before we could finally get it on, keep it on and wear it pretty much full time. Because of the delay, we pushed our second trip to Chicago back a few weeks. Since then, we’ve been to Chicago, Idaho, Minneapolis and back to these places a few times. It’s been months of traveling, packing, flying and stressful trips to appointments that we question the validity of our choices. This is mom speaking. A mom that secretly grieves the life she wanted her baby to have. The life that I envisioned and the experiences that I wanted her to have. None of them including a constant battle with a restrictive brace that invades every memory we have or will have. Every morning, before we are even out of bed, she tells me she doesn’t want to wear her super suit. She says she’ll “wear it tomorrow” and it just kills me. We try to make it fun, we try to be super excited, but deep down we’re all exhausted from pretending. Until our trip to Idaho, the mom in me was questioning the 10 years of education that made me a doctor. I often wondered if my educated mind was steering me down a wrong path, a path that came from fear rather than knowledge. This is precisely why I’ve sought out more qualified, knowledgeable doctors with many years more experience than myself as a way to keep my educated mind and my mom emotions in check.
The conclusion: my educated mind was right, even though I would love this to not be happening. After all of the evaluations, doctor visits and opinions, I am confident that we are going down the right road. Definitely the path least taken, and probably the hardest path ever, but nevertheless the right path for us. My heart and my innate tell me this is right even though my mind fights the reality of it. The progression of her curve seems to be minimal, but we haven’t completed all the necessary x-rays since she’s been having so many. The objective, unbiased, educated people I’ve sought out believe that this is the right road and feel they would care for their very own children just the same. I have to trust that we have been led to those that can guide us objectively, with clear minds and unbiased emotions. Success in managing this will mean keeping the curve under 40 degrees, maintaining her posture and avoiding any damage to the nerves, vertebrae and discs in her spine.
You know that feeling you get when you ride a roller coaster to the top, just before you plummet? I have that feeling. Every day. When I sleep. When I watch her play and when I see her avoid certain movements because she can’t do them. My baby doesn’t have cancer. She doesn’t need an organ transplant and she isn’t going to die. But, she will always have a spine that isn’t straight, even if they do surgery. Her nerves will always have pressure on them and it will continue to affect her. She will have to battle this every day for the rest of her life. Forever. “Mass cannot be created or destroyed” Damn you physics and your damn theorists.
Just last week, Hailey’s brace started fitting incorrectly. Even through small adjustments, we are having problems with it and may have to go back to Chicago 2 months early. After our last appointments, we were hoping to get through to January without a new fitting. In our modern world, we are going to try to skype, send pictures and get x-rays here to avoid the cost of a trip. Another complication and another struggle.
There are very pivotal events over the last four years that stay very clear in my mind. Days that I will never, ever forget. The day I graduated from chiropractic school, a feeling of freedom and hope for any future I wanted to create. The day I found out I was having twins. The day I went into labor at 24 weeks and they told me my babies weighed less than a pound. My loving midwives after we gave birth to twins at home after 15 weeks of being in bed. The day Hailey stopped breathing in my arms and the following days we spent at Children’s Hospital. The day we finally thought we had made it, and the day I saw Hailey’s x-rays filter up on Doug and Sara’s digital x-ray machine. Just this last weekend, the day I realized that we are on the brink of losing everything.
Last night I was reading the girls books before bed. I always let them pick out which book they want and then we go to bed. Hailey always picks the same one. Every. Single. Night. I usually try to suggest a different one, but she always wants the same one. Ever since she could hold a book it has been her favorite. Its title:
Annie the Ant
It’s about Annie, the ant that doesn’t need any help. She can do it HERSELF. Only she can’t. At the end, she needs the help of her ant hill to carry all the food back. The queen tells her, “all you had to do was ask.”
Some weeks ago, the pastor of our church asked me, “Where is God in this?” I couldn’t answer him. Where IS he??
We are struggling. I don’t ask for help. It’s humiliating, embarrassing. I am STRONG! I can do it MYSELF! I’ll work harder. I’ll work longer. We’ll catch up. We can juggle the expenses. This can’t wait. Our opportunity to effectively change Hailey’s outcome is NOW. We need the information now.
Well, we can’t do it ourselves. We’re trying, and our family is falling apart. I was afraid of what people would think if we asked. I’m a chiropractor, John is a finance manager. I’m supposed to be THE support for everyone I care for as a chiropractor. I’m not supposed to need help. I’m the one helping people.
We should have this. . only my practice is only a year old and we’re still digging out of debt from the pregnancy complications. Our jobs are based on performance. When you travel non-stop for over 2 months, it negatively affects our income. Yet, we make too much money to get help, and the insurance we had covered nothing. Nothing.
Where IS God in this? I haven’t figured it out yet, but I know that over the last few weeks, Hailey hasn’t set that book down. She talks about it in the car, and she reads it every night. At least twice. I started to remember a story about a man on a roof during a flood that claimed “God would save him.” After he had turned the boats away, he met God. He asked why he didn’t save him and God’s reply was “I sent you boats.”
Well, Annie, I’m hoping you have some meaning. Over the last few months, I would have rather drowned in my pride than ask for help. I’m hoping that by asking for help, we can rebuild and restore our family as well as give Hailey everything she needs. I hate to admit it, but we simply need some help. I’ve built a fundraiser site for those that wish to help. I am trying to get a community benefit together for December 8th, but I’m having trouble organizing everything as well as keeping up and catching up with everything at work, home and kids. If you can help in any way, we greatly appreciate it. Even if it’s just spreading the word, asking someone for a silent auction item or helping get things together for December.
Here is the site: Hailey’s Healers