Tomorrow is a very important day for us. It is our first Answer Day anniversary.
To tell you about Answer Day, I should first tell you about Avalon. Sweet, brave Avalon. This story is very condensed. Much of the fear and frustration and heartache is skimmed over. But I want to tell it, because it is important.
When Avalon was born, she felt different than my others in my arms. She was like a little bird, soft and fragile as a flower petal. Everything sweetness, gentleness, quiet. She had tiny little lips, and chicken legs. and fluffy duck hair.
Avalon had a very hard time nursing. I tried for 7 months, but her poor latch caused so many cracks and so much pain. She sat up late, and plopped over every time she moved. She couldn't sit independently until she was 9 months old. She crawled at 12 months, she walked at 16 months. All much later than Poppy and Flynn, but still "normal." I told my brain "shhhhh, she is your third, everyone does everything for her. Why should she try?"
At two, she could say three understandable words. She walked as though she was running down a hill. She said "NO!" to everything. She screamed and bit. She was so angry and frustrated with the way her body acted. I knew that we had to ask for help.
Then began the run-around. "Mrs. Hildebrandt, she will do things in her own time." ... "Are her siblings still doing everything for her?".... "Do you talk to her at home?" No, asshole, I lock her in her room and put cheerios under the door. No one listened to me. I discovered quickly that the squeaky wheel gets the oil.
Avalon began therapy. We fought for therapists, enough therapy. Someone to listen. People are assholes and they are lazy, you have to speak asshole language if you want them to understand. She began to have some concerning health problems. The receptionist at the pediatrician's office began to sigh whenever I called.
We saw so many doctors. They began to discuss congenital anomalies, hypotonia, dyspraxia, apraxia, sensory processing disorder, telangiectasias, hypermobility, high arched palate, macrocephaly, dysautonomia, overgrowth disorder, toe walking, so many things that I can't even remember them all. With all of this going on... how could it not be chromosomal? Genetic?
No doctor would listen. She was too normal. Not this enough. Not that enough.
Then everything got scary. Avalon gained 15 lbs in 7 months. From her 3rd birthday until January. She began to sneak food and scream that she was hungry when she had just eaten. Her eyes were constantly bloodshot from screaming. Something was physically wrong with my girl. She was exhausted all the time. She broke out in strange rashes. I spent hours on google and blogs. Hours researching every genetic disorder that I could. I never slept. I cried all the time.
I had very little support in the real world. A lot of people tried to push everything under the rug because they were scared and sad, and I totally get that. I was scared and sad too, but I had to put it all out in the open. No one listens to you if you minimize reality.
Some people couldn't handle the focus being off of them and their own messy lives, and actually tried to make my life harder during this time. There were some very special people who held my hand through all of this, however. To those that I could rely on to vent to, who could hear what I said and not judge, or minimize, I will love you until the day I die. Thank you.
Genetics had no clue. Nothing fit. Avalon had her blood drawn 6 times in 4 months. They tested for fragile X, prader willi, a host of other genetic, metabolic, and thyroid conditions. Everything was negative. Then I heard about a test called a microarray. This test looked at all of her chromosomes at the same time, eliminating endess bloodwork. I begged for it. I was told that is was very expensive, that insurance rarely covered it, and that Avalon might not qualify.
Round one with insurance, we were denied. Round two, denied. I decided to be a bitch.
I began calling every morning and telling them that we needed this test. That I would call every morning until we got this test. I raised hell. I left 5-6 messages a day. Bingo. Annoying people get shit done, I'm telling you.
Avalon got her blood drawn in early March. She didn't cry or even wince. She was so used to it. We waited.
Last April 3rd, I was mudding a ceiling in preparation for selling our house. The phone rang. My hands were covered in drywall mud and the call went to voicemail. I quickly washed my hands and listened to the message, it was our geneticist, "Mrs. Hildebrandt." she began, "We have Avalon's test results back.". Oh, another dead, it has to be... but she continued "We found something.".............
........"Avalon has 16p11.2 microdeletion syndrome. This explains everything."
And that was it. My battle was over. But it wasn't. It never will be. Since that time I have found community. I have found a sense of peace. But there will always be questions unanswered. I wonder if I could make money being a professional googler, because I am a pro.
Avalon is not a cookie-cutter anything, and she is so, so brave. She teaches me so much and I am in awe of her perspective, her heart, her determination. She will have a hard life, but she will have a good life :) I learned and changed so much during this battle. I learned to be brave, and strong. I learned not to be a pushover. Avalon needs a momma like that, and I thank every awful person I dealt with for teaching me these skills.
Her health has improved in many ways, but there is always something, and there will always be something. Avalon has unique chromosomes, and no one seems to have many answers, but that's okay.
Tomorrow is a day to remember a battle waged, an answer won, and to cherish the amazing person I fought so hard for, maybe with cupcakes. We love you Princess Avalon.
