It has been over 7 years now of asking the question, “Are we out of the woods yet?” To doctors, to my spouse, and as an internal struggle I’ve kept hidden at times, I have had this constant nagging question. When can we just get settled in to what our life is and not have something we are trying to figure out, fix, and/or deal with?
She was 13 months old when I read the official diagnosis of cerebral palsy. I saw it on a consultation report from one specialist to another. That probably isn’t the greatest way to receive a diagnosis like that about your child, who also happens to be the center of your universe. But that was how it happened. I’m sure the report also included her history of infantile spasms, a debilitating type of seizure that had been controlled after 6 weeks of steroid treatment. The report likely indicated that she had global developmental delays (non-mobile and poor fine motor skills) and bilateral exotropia (wandering of both eyes). Those are her main diagnoses. However, no report could sum up or label who she really is and what the world is like with her in it! So let me attempt to do so now.
Chloe was born just 10 days early. They induced labor because I had gestational hypertension. Nothing appeared to be out of the ordinary with my beautiful little newborn. In fact, the pediatrician told me she appeared to be the healthiest baby in the nursery! She sure looked perfect to me!
She was my first child so I wasn’t in tune with what a “normal” newborn looked like to compare and know some of those initial signs that something might be wrong. She couldn’t breast feed, couldn’t digest normal formula, was hypotonic (low tone), generally fussy, and a terrible sleeper. I intuitively felt something was amiss, but her pediatrician kept assuring me some babies are just fussy. Many people had examples of similar situations with their little ones. So I pushed down that mother’s intuition that something was wrong…for as long as I could, anyway.
Finally, when she was 3 months old, I’d had enough. I knew something was wrong. I went to the emergency room at the children’s hospital with my purple-faced screaming baby and when asked what was wrong, I said, “I don’t know. I’m here to find out.” After the intake process and finally getting seen by a doctor, it seemed they had me pegged as one of “those” crazy moms who was making a big deal out of nothing. They patted me on the back and told me to take my fussy baby home and assured me colic eventually passes. I in turn assured them that I was not leaving the hospital until testing had been done and we knew what was wrong with her. They looked into my tired, bloodshot eyes and saw that I meant what I said. So they got the attending physician to come talk some sense into me. In order to talk rather than scream over Chloe’s incessant cries, we had to go to another room. I think in a quiet room, this doctor could see that behind my crazy eyes and insistent demands, there was a rational person who just needed answers and wanted reprieve for her daughter who appeared to be in great distress. The AP finally gave in and agreed to some basic testing to rule out anything major. This included a brain CT scan, an abdominal ultrasound, and some blood work.
As much as I was seeking an answer that night, I don’t know that I could have prepared myself for the “answer” we got, which was actually less of an answer and more of a reason to have more questions. The brain CT scan showed some white spots. They didn’t know what the white spots were so they ordered a brain MRI and referred us to a neurologist. This information catapulted us into a life of doctor’s offices, waiting rooms, and uncertainty….prayers that one day we would figure things out, fix them, and be out of the woods to enjoy the life we had planned of fun, smiles, giggles, cuddles, and all the expected “firsts” with our beautiful girl. Through it all, I never wished things to be different. I never wanted anything but her. She is bravery and sunshine swirled up into a beautiful, blonde, blue-eyed wonder of a child! Her presence fills up the room and her smile is my everything!
Since first getting the news that my Chloe had white spots on her brain…. through every single specialty visit, test, sickness, hospital stay, surgery, you name it…. I’ve been wishing, hoping, and praying that we would be out of the woods. I discarded a “normal” life long ago. I was fine with the wheelchairs, the braces, the therapies…. that acceptance didn’t come easily, but it did come. Yet my heart still lingered and hoped for a clearing at the top of the uphill battle, a place where we could just be and not have to worry about the next surgery or her weight issues or her uncontrolled and constant pain.
Fast forward to just recently when I wheeled my now 7-year-old Chloe into the hospital to be treated for dehydration. It started out as a simple stomach bug, but she is so fragile, you know. It doesn’t take much to push her over the edge. I remember talking to one of the on-call physicians, trying to get an idea of how long our stay might be. I asked, “About how long until we’re out of the woods?” Her reply was a bit of a jolt to my system. “I’m not sure that you’ll ever be out of the woods with Chloe.” I sat there in a stunned silence, not sure how to process what she was telling me. Was it rude? Was I mad? Was it true? Was I sad? I didn’t know.
Her words lingered in my mind and in my heart for a few days until I got it. Perhaps it was abrasive, but I believe it is true. We’re never truly going to be out of the woods with Chloe. There will always be something that is unsettling, that needs attention, that requires extra effort, that is hard to handle. So I better put my hiking gear on and find a way to enjoy every step of this wooded trek for as long as I get to.
There was a time in my blogging history where I would have easily seen and highlighted the silver lining about this part in my post. I even changed the name of my blog for a few years from “TMI” to “Endless Jubilee.” I have now reverted back to “TMI” because, to be honest, our life is not an endless jubilee. I love Chloe and I love our life, but this ain’t no constant party, if you know what I mean. I’ve turned a new leaf such that I simply have to be authentic in my feelings. And to be 100% honest, never being out of the woods is hard. It’s trying. It puts an emotional strain on me and a physical strain on my body. It puts a strain on my marriage at times. It makes it so even though I do not currently work outside of the home, I still have to get someone to watch my only other child, Sam, multiple days a week so I can give Chloe the care she needs. I can only imagine, since she’s unable to communicate to me, the emotional and physical strains Chloe feels on a daily basis. I will say that regardless of the state I get Chloe in or the duration that I get to be in her physical presence, I am immensely grateful that she is my child. She is hilarious, mischievous, sweet, and I am profoundly blessed that she is my daughter.
So I will hike through the woods with her. We’re not getting out of here so I will enjoy the occasional sweeping views, I will appreciate the wildflowers, I will breathe in the fresh air, and I will be grateful. Grateful for her, grateful for the experience, grateful for the people I will meet on paralleling or crossing trails, and simply grateful to be a mother, the greatest of all gifts I could ever imagine being given.