Hiding Away

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She survived her first day alone…with help from her Mom of course. He was hardly ever home between student teaching and working full-time at night. Over the next few weeks She would be inundated with visitors who wanted to meet Baby Girl. While She was thrilled that there were so many people who wanted to meet Her little one, it was also very stressful. She just could not get the words “Cri du Chat Syndrome” to come out of her mouth. She just couldn’t. She didn’t even know the “special needs” term at that point. People would come visit and She would be DESPERATE have the dam break and let the words out. To get support or pity or whatever people offered to someone like her. She should take it but She just couldn’t. So She spent the next few weeks feeling like a big fat fraud. Like a liar. Like a pretender. It was just easier to pretend as if everything was ok for the hour or so that someone was there to visit instead of having to admit that your soul was damaged to its core.

There were a couple of friends and extended family that She tried it out on. Her Grandpa wondered if Baby Girl would grow out of it. Another friend acted as if She had just farted and the room smelled bad. Another said, “Well, I guess you’re just going to have to be SuperMom now.” No one said what She needed to hear. But truthfully, She didn’t know what She needed to hear. She took Baby Girl to work to visit and show her off and told no one. If Baby Girl would happen to cry when She was around people they would always comment on how it sounded just like a kitten. She would just say “I know…isn’t it cute?”

She had to take Baby Girl to a slew of doctor’s visits. She hated those. It was as if She had birthed a circus freak and all sorts of “experts” wanted to view the baby, prod her, test her, look at her, dissect her and She just couldn’t take it. Was this what life was going to be like from now on? One appointment after the next where She knew more than they did? On Her second visit to the pediatrician not only did She not get to see Baby Girl’s regular pediatrician, but She had to spell the syndrome for the DOCTOR and pronounce it, She had to answer all sorts of asinine questions about the syndrome too. Um, Hello? You’re the doctor here! You’re supposed to be helping us!! The doctor’s office also provided Her no help or information whatsoever on what She should be doing to help Baby Girl. Her Mom’s friend, who happened to have a son with Down Syndrome, had been way more helpful than any of the “experts” She had encountered. She decided to look for a new pediatrician. Stat.

And because of all this craziness, She hid. She didn’t go anywhere that wasn’t absolutely necessary. She stayed at home in her little bubble and pretended as if She was just a Mom with just a baby and nothing was wrong. They would watch Regis and Kelly and Days of Our Lives and Trading Spaces and Oprah and play on the floor and pump and feed and change diapers and nap and read and pretend as if everything was ok. They lived for Him coming home or Mom stopping by. Those two knew what was really going on. Those two were the only ones in the world She could be real with. She lived for those visits. They were what got her through. That and the television.

She felt so alone.

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14 responses to “Hiding Away

  1. I cannot imagine how stressful that doctor’s appointment must have been. I’m so glad you found a new one. That is just shameful doctoring.

  2. I can not believe the lack of help you got from the doctor’s office.

    And seeing where you’ve been versus where you are – I think this is a great deal of help for many Mom’s out there.

  3. For years I have tried to remember if you told me about Olivia when I came to visit you. The more I have read your blog, the more it haunted me. Did you talk about it? How did I react? I honestly can’t remember.

    I do remember how tired you seemed and that you were not your normal bubbly self. I just assumed that was because of the “normal” stress of having a newborn. I cannot imagine what was going through your head as I was staring at her and beaming with excitement.

    Tiff I wish had I known the pain you were going through. I don’t know what I could have done…I hope I would not have reacted like someone just farted.

    You are an amazing mother – an amazing woman! You have no idea how much your blog inspires me.

  4. Oh what a way to enter motherhood, wouldn’t ya say? I hid for awhile too. There was just so much to take in and deal with. It’s like we’ve talked about before, the pictures and videos we have from the beginning months are a real treasure now because the fog during that time was so thick we could not see and enjoy much.

    So many blessings I pray for you Tiffany!

  5. In the midst of honesty and deep emotion, you throw in the word “Fart” and I’m crunched over laughing! That was hiliarious!

    But, I was also saddened that you couldn’t get the words out. I still have those days now. I was lucky, in a sense, that I didn’t have to do the passing on of info. We learned about my son’s diagnosis at the hospital at birth, so I asked my mom to explain to others what was going on and why we weren’t leaving just yet. In retrospect, I don’t know how SHE got the words out, and it might not have been fair of me to ask her to do that, but I didn’t have to find myself alone. Immediately, had support all around me.

    This is why my heart broke to read that you felt it was easier to pretend than to get the words out. There is nothing worse than keeping a “secret” so large it consumes you.

    I have to say, that even though it’s been over 2 years, I still find myself hiding. This is why I admire your strength and your courage not only to go on and have more children, not only to GET out and have a life, but to share your story with others. Thank you.

  6. I feel every moment of your “aloneness.” Yesterday, I felt so down I couldn’t even blog. I get it–but then I’m the Mom that has the kid with a disease no one has ever heard of and if they have heard of it, my kid has the worse case they have ever seen. And they say he’ll be in text books. Not what a Mom wants to hear.

    You shift your mind, try and pretend. And figure out, they are wonderful, perfect, to perfect to ever let go of.

    I loved you comment on my blog about toy story 3. My eldest used to dress like Woody and Buzz and next year he will go away to college. I don’t know if I can handle the movie.

    Your writing is amazing. I am deeply moved and know that it is a miracle to find the strength to go on…but somehow we do.

  7. Such a moving, heartfelt piece. Even without the Cri du Chat syndrome – I remembered those early days when I, too, felt so alone. (Adopted son in the house just 3 months and just gave birth to bio son) You echo here the inadequate, lonely yet coping and struggling that many new moms go through. I’m just so sorry you had to have the added isolation of “special needs.” Hugs, sweet bloggy friend.

  8. I am still in disbelief about the Docs!

  9. I am glad you are not hiding anymore! Every time I read your entries … can’t help but think about all of those you are helping along their journey. Good job!

  10. As many of your followers have insinuated, it really does take a community of support to raise any of our children today…and I’m thankful to be in your community of support and I’ll return the favor ;-)

    Adam said to me today “Thanks for being my mom” and I told him “thanks for choosing me”. What a blessing our little people are, and Olivia chose you as well my friend and knew/knows you would/will be the best mom you can possibly be for her. ;-)

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