I've always been a control freak, someone you could easily label, Type A. I guess the first time I really realized that I might be different, I was sitting in my college dorm room sophomore year and I had a bucket filled with hot water and Pine Sol and I was cleaning each individual square of the milk crates that held my books and papers. I suddenly realized how incredibly anxious I felt about getting each square clean.
The compulsions have become worse over time. Well, let me rephrase. Some compulsions have gotten better, while others have gotten worse. Through many years of therapy, I've learned to get to the root of many of my compulsions and begin to dissect them bit by bit in order to deal with them. Others still haunt me and hold such tight ropes on me that I can sometimes hardly breathe. For the most part, my compulsions have served me well. They have given me drive and determination to leave a world that had I stayed, would have sucked me into depression and delusion. They gave me the motivation to graduate from a college that I was extremely unprepared for. And more than anything, they gave me the courage to give my heart to someone else, even when that same person confronted all those compulsions and told me that I couldn't punish him with them.
But never before have I been faced with a situation where I couldn't control the outcome. Until I had Luna. I wanted a natural birth, but despite an intense labor that ended with 4 hours of pushing without medication, it did not go the way I wanted. I wanted to breastfeed her until she weaned herself, but despite hundreds of dollars on lactation specialists and two "rebirth" experiences, Luna did not breastfeed. And I wanted a normal child, but Luna is not normal in the traditional sense. And so I begin writing about the most painful experience I've ever encountered. I've had to accept that this is the hand I was dealt and despite whatever I do, think, say, or manipulate....this will not change.
After Luna's 12-month check-up, her pediatrician was concerned that she was not meeting some cognitive milestones, e.g., responding to her name and following someone's point. Many conversations later, we learned that the real concern was autism. Given all the research I did, I was totally convinced that the low muscle tone she'd already been diagnosed with was just another sign of possible autism. Fast forward to early June. We see a pediatric psychologist who evaluated Luna and did not think she was autistic. Nonetheless, I was in high gear trying to get Luna into the Autism Clinic at UCSF and get her into neurologists at Oakland Children's and UCSF. The neurologist at Oakland Children's couldn't see her until September, however, thanks to some great connections, I was able to get her into the neurologist at UCSF.
In mid June we had an MRI done. It was horrible day. We had to be at Oakland Children's at 7AM and Luna had been fasting since 6PM the night before. She was out of sorts and hungry and the check in took forever because of some concerns about the type of anesthesia to give her due to the low tone. Putting her down was heartbreaking. We sang Twinkle Twinkle Little Star as she was put under. She looked so scared and confused. I completely broke down and had to be escorted out of the room, but we were let back in the recovery room. I hated seeing her with all the tubes and IVs, but she came out of the anesthesia like a little trooper. After she woke up, she pulled the oxygen tube out of her nose and said, "Dadoo!" And I have to say, part of me wanted to take a photo of her in the little feltish type hospital "gown" (pants and smock).
After the MRI we submitted an evaluation and video of Luna playing to the director of the UCSF Autism Clinic. Shortly after that, we received word that once again confirmed that there were no signs of autism. It was a huge relief, but we were still still awaiting the results of the MRI. We saw a neurologist at UCSF on July 1 and she met with us for about 2.5 hours and then called us later after she'd reviewed Luna's MRI with one of the pediatric neuroradiologists. She confirmed that Luna had an abnormal MRI and had both ventricular megaly (enlarged brain ventricles) and abnormally low amounts of white matter (the stuff in the brain that's responsible for all the learning, coordination, processing, etc.). She felt the root cause happened in utero and both or one may be linked to her "global deficits" (speech, cognitive, and physical), torticollis, and low tone (which she indicated is both upper and lower). She suggested that her global deficits make Luna equivalent to a 9 month old even though she was almost 16 months.
Given Luna's condition, the neurologist wanted to first rule out excessive ventricular liquid by having us see an eye doctor who will test for optical nerve pressure. She feels excessive liquid is fairly unlikely even though she has ventricular megaly. Further, as it is currently unclear what is causing both the enlarged ventricles and reduced white matter, she also wanted us to see a geneticist at USCF.
The neurologist seems fairly convinced that Luna will remain delayed throughout her life compared to an average child/person, and strongly emphasized the need for (1) physical therapy, (2) occupational therapy and (3) speech therapy. At that point, we were already seeing a PT and had begun OT. Shortly thereafter, I got Luna into a speech therapy program. We also had a bunch of blood tests done and as a result have learned that Luna's condition does not seem to be genetically linked. The good news is that means we are more hopeful that the condition won't worsen. The bad news is that it doesn't really answer anything. It doesn't tell us why Luna is the way she is. And for me, that is incredibly uncomfortable.
We also learned that Luna does NOT exhibit any pressure from the excess liquid in her brain. This is HUGE, as it means any type of brain surgery is highly unlikely. We were extremely concerned that she'd have to have a brain shunt put in to deal with the excess liquid.
The other good news is that Luna is making progress. She crawled on June 5th. Last week she started pulling herself up to standing and she now has words: ow (for cat, as in meow), ba (for ball and this just began a few days ago), bu bu (for goodbye), ah ah (for dog, as in arf, arf), and a a (for duck, as in quack quack). In the past two weeks she has also learned to put toys into another object (like a box) instead of just take them out, she has learned to sign "more", and she can follow some commands. She also responds to her name a lot more. About a month ago she learned to climb up stairs and she can sometimes come down too.
So where does this leave us? I don't know. In limbo, I suppose. I refuse to be depressed by it all and I try to celebrate all of the little achievements, though I think sometimes it is just a reminder of how far behind she is. Sometime I go to my mommy's playgroup and get really sad that Luna is so different. Most of the other babies are walking, while Luna is still only crawling. Many of them can talk some and Luna just makes noises. It is hard not to compare.
D and I go through many emotions, though I think we are in a good phase right now. Or should I say, for right now. Sometimes we are so sad that we cry all the time. Sometimes we are angry...angry that this is not fair to Luna and not fair to us. Sometimes we are so scared that Luna will one day know she is different. Sometimes we worry that she will always be different and that the gap between her and her peers will just get wider. Sometimes we are hopeful that she will catch up. All I know is, it is what it is. I didn't want things to go this way, but as I have begun to accept, I have absolutely no control over this.
