Wednesday, August 19, 2009

Can I vent for a minute, please?

Dear Father-in-law,

How dare you. When your son calls to tell you how afraid he is that his baby could be autistic, how dare you belittle him and make him feel so small. He called you because this is the same diagnosis that his brother, your other son, has. So he thought you might be understanding for once. Instead of listening, you first had to argue with him and tell him that everything about Brooklyn's development is normal and that everything is fine. Then, when your son tells you, no, her doctors say it's not normal, you get mad and say that it's normal for a baby who has had the medical problems she has had. That you would expect it so why can't we? We just need to deal with it. That we don't know what real problems are. That everything that Brooklyn has had to struggle with her entire little life has never been "anything major."

Then you turn downright ugly and say that if there is something developmentally wrong with our daughter, that it's our fault because we "just strapped her in her carseat or swing and left her all the time" when she was an infant. I'm sorry, but when the hell did this happen?? I seem to remember nearly losing my mind because for months, I would not even put her down so that I could use the bathroom or change my clothes or get something to eat because I could not bear to hear her cry. I recall not sleeping many nights because she would not sleep unless she was being held, and my intense fear of SIDS wouldn't allow me to fall asleep while holding her, and I couldn't even dream of letting her sleep in my bed. Yes, she eventually began sleeping in her carseat, but that's because her doctors told us that was where she needed to sleep because she needed to be elevated.

So please tell me, when the fuck did we EVER just leave her in her carseat or swing and walk away? I still cannot leave her unattended for five seconds. Even when she was asleep in the carseat (on doctor's orders, remember???), she was right beside our bed at night, or right next to wherever we were sitting at the time. We have always talked to her, read to her, sang to her, played music for her, bought all of these developmental toys to play with her, everything we could think of to try to optimize her cognitive growth. We have held and rocked and cuddled and hugged and loved on our daughter more than I ever thought possible. Countless hours.

But you wouldn't know that, would you? You wouldn't know because you are a selfish asshole, and you could count the number of times you have been around your first and only grandchild on your digits. You could count the number of times you've held her on one hand. You lost interest in my pregnancy when we found out that our unborn baby was a little girl. At the hospital when she was born, you wouldn't call her by her name, and repeatedly referred to her as "Brittany" and "Brooke." Instead of an appropriate baby gift, you brought your hours-old granddaughter a hideous dog chew toy in the shape of a pig that was bigger than she was. When your son asked you to hold his pride and joy, you waved him away and said, "Nah. I don't want to." When she was terribly ill and was hospitalized when she was four months old, you came to her hospital room and mocked the IV line in her head, even after hearing how traumatic the experience was for both she and I. She was horribly ill and we were afraid, no one knew what was wrong, and you sat there and laughed at her.

You think that you know so much. You've disregarded our baby's doctors' orders because you believe that you are so much smarter than her specialists. When she was having so many problems with her digestive tract, you fed her meat juice, when all she had ever ingested prior to that point was breastmilk, formula, and baby cereal. You asked Dave if our daughter could have it. He said no. We looked over and not a minute later, you were doing what you wanted anyway. You've run your mouth off many a time, telling us what we need to be doing to "make" her sit, crawl, walk, breathe better, sleep better, gain weight, whatever you thought her problem was on each occasion. Do you think that your son has forgotten that you were scarcely around when he was growing up, and that when you were, you didn't make an effort to be a parent? Do you honestly think that we would believe that you're an expert on any of these matters?

You're the most ignorant, pompous, immature, inconsiderate, heartless asshole I have ever known. How dare you. How dare you crush your own son with your words when he needed you to just shut up and listen, or God forbid, reassure him a little bit. He is scared. He is beside himself with stress and worry. And you respond with talking out of your ass and mindless, unfounded accusations. HOW DARE YOU accuse us of poor parenting and blame us when you are never even around to know that we devote every last drop of our love and energy into making everything right for our precious baby girl. How dare you make us question ourselves. How dare you try to make things worse than they already are with your idiotic lies. How dare you treat our family this way.

Monday, August 17, 2009

Just a little love note

Dear Brooklyn,

You amaze me. It seems that with each passing day, there are new pieces of your personality that emerge and new things you do that are so incredibly sweet. And I fall deeper and deeper in love with you. I never thought love this deep was possible. I am in awe of the fact that God gave you to me. How in the world could I have been a part of making such a beautiful being as yourself?

Yesterday, you and I were in the car and we were listening to Death Cab for Cutie and Radiohead. I looked in the rearview mirror and I saw your head turned towards the sky, a smile on your face, and your arms in the air, waving to the beat of the music. You love music. You feel it in your bones and down in your soul; I love that about you. You are much like me in that way, I can see it. You feel totally free to express yourself, and I wish that I could be that way too. Most of us lose that freedom as the years pass by. I hope you never do, because it is such a beautiful part of you.

You gave me a kiss for the first time yesterday. You woke up from your afternoon nap and hugged me over and over, like you always do. Then you looked me straight in the eye, leaned forward, and gently pressed your little lips against mine. And again. And again. No puckering, no smooching noises. Just a soft touch and more sincerity than I have ever seen. Later, as I carried you around the park, you put your hand on my cheek and turned my head toward you so that you could give me more kisses. I choked back my tears. You are finally able to return the love I have been showing you for all these days, weeks, and months. It fills my heart with more adoration than I can contain. Loving you is incredible, but knowing that you love me too? It's the best feeling in the world. It amazes me that you love me back. I don't deserve anything that pure, that lovely, that sweet. But you choose to love me anyway. I don't deserve you, but yet you are mine.

What a miracle you are.

I love you, Brooklyn.

Thursday, August 13, 2009

She fills me with such hope with a single word....

Tonight, Brooklyn and I sat on the couch, reading her books. We read a Sesame Street book, and then an Arthur book. Then she brought me "Corduroy." I began reading the story to her. On each page, I would ask, "Where's the bear? Where's the bunny? Show Mommy the baby doll. Can you please show Mommy where the giraffe is?" My questions were met with blank stares at the pages, just the way it has been for more than a month now. My baby girl had started recognizing animals and items on the pages of her books, then one day she just suddenly stopped. I have felt my heart sink a little further each day that she doesn't talk, doesn't want to hear the names of everything she sees, doesn't seem to care about words anymore.

I sighed and let Brooklyn turn the page.

I am nothing if not persistent, though. Next page. "Where's the bear, Brooklyn?"

"Behhhh??", said a tiny voice.

I swear I had to catch my breath. Surely it was just a coincidental noise she was making. Maybe it was wishful thinking on my part.





"Oh my God! David! Is she saying bear?!"

Dave tested out the waters. "Hey Brooklyn....bear?"


My husband nodded excitedly. "Yeah! Yeah, she is!"

"Bear?????", I squealed.

"Behhhhhhhhhhhh???", said Brooklyn, bouncing on my lap with a big, proud smile.

"Oh, Baby Bear. Oh my gosh. You said bear! You talked! Oh, my smart little girl!!! Oh, thank you!!!" I drowned her in hugs and kisses.

And we said "bear" back and forth about 20 more times. My heart beat so fast in my chest with the excitement of it all. A flood of relief washed over me. I think I smiled for two hours straight. Oh. My. God. Thank you, thank you, thank you.

My little girl got tired of the "bear" game after a while, but she did humor us and say it a few more times throughout the evening.

As Dave was changing Brooklyn into her pajamas before bedtime, he was tickling her and saying, "Ohhhh....Baby Bear!" And then we heard, "Behhhhhh? Bee." Dave said, "I think she's trying to say Baby Bear!" So we repeated "Baby Bear!" over and over to Brooklyn, and over and over she said in her sweet little voice, "Behhhhh? Bee."

Before I laid my sweet girl down in her crib tonight, we cuddled together, listening to Iron & Wine. Brooklyn laid against my chest and snuggled her little body into mine. I laid my head against hers and cried softly, dampening her soft little curls with my tears. "Thank you, God," I whispered. "Thank you for letting my Baby Bear talk. Thank you. Please let her keep talking. Please let her other words come back. Please, please let her be okay. Thank you so much for her, God. Please let her be okay. Thank you, thank you for letting her talk again."

I could have held on to her forever tonight. And she seemed to feel the same. We stayed awake together later than usual, I held her and rocked her and talked to her. We were both so calm and peaceful. I told her how much I loved her and how proud I was of her. Every time I paused, she answered me with a little baby noise. "Mmmmm." To me, her sounds said, "I love you too."

I am filled with such love, such gratitude, such relief. It's as if the sound of her sweet little baby voice healed something inside of me that has been falling apart. I will not forget tonight. As I write this, I am still crying, yet I haven't felt this good in a while.

I know everything that has been going on with Brooklyn isn't suddenly fixed tonight. I know we still don't have all of the answers we need. But she took such a step in the right direction. It gives me hope and lets me believe that my little girl will be all right. Tonight, the feeling of fear that has been hanging all over me and weighing me down has been replaced with peace.

I think I will sleep soundly, for the first time in weeks.

Monday, August 10, 2009

A little reassurance, but a lot of "wait and see."

Brooklyn saw Dr. A, her pediatrician, on Friday afternoon. This visit was of course due to the fact that she has stopped saying all of her words except for "Dada," and we are worried about the possibility that she could be autistic.

Dr. A said that we did the right thing by bringing her in to see him. But he said that Brooklyn is too young to be diagnosed with autism or any other type of pervasive developmental disorder. He is concerned that she is no longer talking. He told us that it is not normal and it is not what you want. However, it "just happens" to babies sometimes, and it is possible that any day her words could return and everything would be back to normal. But the longer she goes without speaking, the more worried he will be.

Dr. A told us that his gut feeling is that Brooklyn is NOT autistic. This is mainly because she is continuing to socialize in ways other than speaking. During the appointment, Brooklyn got my keys out of my bag and kept bringing them to Dr. A. He said that this was the most positive thing he saw during our appointment, because autistic children will not do this because they don't care about involving others in their play. That was really encouraging. Brooklyn brings us her toys and books and things all the time. She always has.

Dr. A said that he will not tell us that some type of autism spectrum disorder not a possibility. He said if you took 100 babies who were going through what Brooklyn is going through right now, 90 of them would turn out fine, and about 10 of them would probably fall somewhere on the autism spectrum. I'm sorry, I know that was supposed to make us feel better, but I just really don't like those "10 out of 100" odds. There is not any kind of test that they can do at this point to give us an answer. Dr. A said that a lot of behaviors that are normal for a 16 or 17 month old would be considered autistic behavior in a child who was closer to two years old. He said that many times, when parents come in with similar concerns, he just tells them to relax and not to worry about it. But he said that he wasn't going to tell us that because of everything we have already been through with Brooklyn, the amount of medical problems she has had already that are not "the norm," and because of Dave's family history of autism. He called the genetic component of autism "huge."

He doesn't think that it is a neurological problem because Brooklyn hasn't regressed in any other areas of her development. But he will order a head MRI and refer her to a developmental specialist in a month or two if she still isn't talking.

So I asked, where did her words go...why would this just happen? Dr. A didn't have an explanation. Sometimes it happens after a severe infection, like encephalitis. But Brooklyn hasn't been sick. There is controversy over whether this can occur after immunizations, and he said that unfortunately Brooklyn falls into the post-MMR immunization window, when some people believe autistic behavior can begin. But then he talked about the research that showed that autism is not linked to the MMR vaccine. So I was confused...he brought up the immunization issue as a possible cause, then said that the vaccine and autism aren't related. I need to read more about this, and I will probably freak myself out more in doing so.

I guess the bottom line is that Dr. A doesn't know why this is happening.

He said that there wasn't much we could do right now besides wait. We are to verbalize everything we are doing all the time to her, talk to her constantly. We have already been doing that. I asked about the evaluation with Early Childhood Intervention, and Dr. A said that we could move forward with it if we wanted to, but that it wouldn't do much. He said that they would come and evaluate her and tell us that she is on the level of about a 10 or 11 month old, which sounds really bad, and put her in speech therapy. He told us that there is not much evidence that speech therapy is effective in babies Brooklyn's age. I think that I am going to go ahead and do it. I sent in the referral 2 weeks ago, and I haven't heard anything back yet. Hopefully they will call us soon. I need to feel like I am doing something for my baby besides just waiting and watching.

We go back to Dr. A in a month. So that's pretty much it for now. Wait and see. Or, in my case, wait and fret and worry and stress and overanalyze.....

Wednesday, August 5, 2009

The Book of Love

As I was gathering my things to leave for work yesterday morning, my mother in law sat on our couch and chatted away about what she and Brooklyn were going to do that day. She wanted to know where her best walking shoes were. "I read online that she should be able to walk backwards by now," she said. "So I'm going to take her on a walk and we're going to try it."

"Oh, okay," I replied. "Just remember, she's been a little behind on her motor development, so she might not be ready yet, and that's okay."

"Yeah, I know. But she's ahead on some things too. And she only does some of the weird things that Jon did when he was a baby."

I swallowed hard. Jon is my husband's younger brother, who is autistic and mentally retarded. We have not told my mother in law that we are having Brooklyn evaluated by Early Childhood Intervention or that we are afraid something could be wrong with her. She doesn't seem to have noticed that Brooklyn is no longer speaking words. She doesn't know that we are taking her to the doctor this Friday because we are afraid of what this could mean.

I tried to find my words and pushed the lump in my throat back down. "Um. Uh. What does she do that Jon did when he was a baby?"

"Well, you know how she plays by herself, and she gets off in her own little world, and you can't distract her from it? And you say her name and she doesn't look at you or anything? Jon was the only one of my kids who was like that."


"There's a lot of other stuff he did that was off that she doesn't do. So I think she's going to be fine by the time she starts school."

"Yeah." Fake smile. Outside in my car, I make a panicky call to David, and he tries to reassure me and tell me just to wait until Friday. He says things like maybe his mom doesn't remember which child did what. He tells me that all kids "zone out" when they're playing, that it's normal.

Maybe. But maybe not.

I am distracted all day long at work. My fingers think for themselves as they type away at reports on criminals while my mind is racing, playing the "what if" game. At lunch, I look up the age-appropriate milestone checklists again. I read over the possible early signs of autism again. My baby doesn't have all of these warning signs by any means. She still makes eye contact with me, she smiles, she laughs, she talks to herself in her baby language. She doesn't flap her hands or arms or organize her toys into categories. But that big red flag keeps jumping out at me....loss of words. Where did her words go? Why? I try to look for other causes of this, but everything I read mentions that dreaded A-word.

That evening, I leave work and drive across town to pick up one of Brooklyn's prescriptions. I am blaring one of my mix cd's, and Peter Gabriel's "Book of Love" begins to play. The beautiful sounds of the strings fill my ears, and I feel my heart breaking.

Ever since we started trying to conceive, David has had dreams of a little girl, our little daughter, playing a violin. He wants so badly for Brooklyn to play the violin, because I love them so much, and he has dreamed it vividly so many times. It paints a beautiful picture in my head as well. We have been so excited to see that Brooklyn appears to be so musically inclined...she loves to listen to music, she dances to every type of music she hears with a big grin on her face, she seems to feel the notes and chords and rhythms deep down inside her little body. "I can't wait to get her a violin," David said the other night. "I can't wait to hear her play it."

Fear ran through my body as I listened to the song playing, the strings swelling.

What if she CAN'T.

What if she can't do all of these other things that I want for her, that I dream of her being able to do. Doing well in school, becoming whatever she wants to be, getting married, having a family of her own. What if she can't do anything.

What if she's like my brother in law and can't ever live independently? What if, like him, she has to live isolated, trapped as an angry child within a grown-up body, unable to relate to anyone else? What if. Oh. My. God. What if.

I lost it. I sobbed hard all the way to the pharmacy, tears blurring my vision of the traffic, my throat so tight that it was painful to breathe, my chest feeling like it was going to burst wide open. "Dear God," I whispered, "Please let my baby be okay. Please let her start talking again. Don't do this to her. I can't take this."

These fucking what if's, and this fucking waiting game. I am not trying to dwell on the worst possible outcome, and I'm not trying to be negative, especially when we know nothing at this point. I don't want to jump to conclusions or assume anything. But I am so afraid. My mind wanders off to dark places these days, and sometimes I can't bring it back.

Monday, August 3, 2009

This machine cannot communicate these thoughts and the strain I am under....

I knew I hadn't blogged in a while, but I was shocked to get on here and see that it had been just a couple of days short of a month since my last entry.

Allow me to attempt to explain myself.

No, I can't give you a single specific reason why I haven't been writing. I will tell you that I started this blog to be my personal, somewhat-anonymous space where I could say what I wanted, where I could vent and worry and talk about things that I am normally too afraid to talk about in real life. Well, either afraid to talk about or I just don't feel like anyone wants to hear about it. And now, apparently I am getting that way with my blog too.

I could write about how more often than not, my marriage seems to be crumbling. How my husband and I fight for hours at a time, days at a time, yell at each other, and how I want to hit him so badly for saying the hurtful things he says to me. How I have cried so hard that I cannot stop and end up having panic attacks in the middle of the night, because I never, ever thought that we would be like this, and I never would have dreamed that I would feel the way that I do about him so often now.

I could blog about how my brother was living in a Wal-Mart because he has been kicked out of overy homeless shelter in town because he refuses to stop using drugs. I could tell you about the call my parents got from one of my brother's friends, saying that my brother had a cyanide pill and planned to take it soon to end his life. How my parents asked me to help, and so I knew nothing else to do but to use my connections at work to have a probation violation warrant issued for his arrest. I went and told his probation officer's supervisor about every violation that I knew of. I found out where he was going to be dropped off and when on the day said warrant was released. I stayed on the phone with the officers as they found and followed him, and arrested him. How my brother said he would kill himself in jail and my guilt related to that. What kind of person orchestrates her own brother's arrest? Me, apparently, when I see no other way to try to save him from himself. But if something happens to him behind those bars, I will never be able to forgive myself. Because although I am not the REASON he is in jail, I put him there.

I could write about my worst fear in the world right now...that at sixteen months, my baby girl has stopped using all of her words. How every word with the exception of "Dada" has seemingly disappeared from her little mind. That it has been nearly a month since I have heard her sweet, tiny baby voice say "Mama", "baby", "apple", "hi", "hey", "bye", "puppy", "egg", or "fish". That she no longer points at pictures in books, asking to hear the words for everything by saying "This? This?" How I am completely terrified of that horrible, ugly A-word...autism. That my husband is sick with worry over it because it runs in his family. "If she has it," he says, "it would be all my fault." And that it is taking what seems like a million years to have her evaluated or seen by her pedi. That I truly don't know if I could handle that diagnosis. I am so afraid to even think of it as a possibility, to type or speak the word. As if doing so will curse her with that condition or make it suddenly real. It tears me into a million little pieces.

I could write about any of those things.

But I end up pushing it all back down inside, rolling my fear and anger and guilt and sadness and worry into a ball in the pit of my stomach, and not using this blog for what it was intended to be - my only outlet for all of these feelings and fears. I tell myself that no one wants to read whiny, negative entries. That if I write the things that I am thinking, that people will think I am some kind of self-pitying, bitchy, crybaby drama queen.

And then I can't think of anything else I have to say, because all of these horrible feelings seem to consume me completely these days.

And no one wants to hear about that, right?
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