Monthly Archives: August 2014

The Great Escape

10653621_10101893479149479_4936584095703173115_n_editedBack in January, through something short of a miracle, we won a contest. The prize was a week long cabin stay at any Virginia State Park of our choice. We ended up choosing Natural Tunnel State Park and celebrated the anniversary of Charlie’s NICU discharge there last week. It was the vacation I hoped for and desired. So much so, that I’m bitter about being back.

My husband and I decided to disconnect from our lives. Other than using the visitor center’s wifi to upload pics and respond to a few tweets, we were out of contact. It was a marvelous escape.

I countered phone calls, emails, and text messages from doctor’s offices, therapists, and the like (whom can be surprisingly persistent over trivial matters) with the simple message “On vacation, will return on Saturday.” I did not have to answer questions from people such as, “Is she eating yet?” or “Isn’t she really small for two?” Nor, did I have to politely listen to unsolicited advice.

It was exceptionally quiet. I love quiet.

984177_10101885614994309_3831279311050384390_nThe area was extraordinarily beautiful and rich in history. The first few days we explored every inch of the park. Charlie went swimming, my husband went fishing, and I went hiking with our dog. We played on the playgrounds, rode the ski lift to the Natural Tunnel, and climbed up to Lover’s Leap. Charlie found a trail marker with a “2” on it and she stood over it saying, “Two, two, two, two, two…” We had to pull her away to finish the hike.

Later, we ventured over to nearby Wilderness Road State Park. We poked around the historic area with the fort and talked to the period actors. Charlie liked the blacksmith. She exclaimed “Whoa!” when the bellows blew sparks and said, “Ding!” each time he hammered. Wilderness Road had a really nice playground but Charlie preferred playing in the natural play area.

10605993_10101884004162429_5830653123281358990_nTowards the end of the week, we visited Southwest Virginia Museum State Park which was also near by. (For those who are counting, that makes 28 out of 36.) The museum was filled with artifacts from the area. Charlie liked the interactive exhibits. She repeatedly played the same track about spiritual music. Fortunately, we were the only ones touring the mansion at the time.

After the museum, we went to Bark Camp Lake. The lake was lovely. However, we did not get to stay long because Charlie had an issue. She would not let go of my leg and screamed, “Mommy, mommy, mommy!” We assumed she was just tired and headed back to the cabin for a nap. But, we realized later that her stomach was bothering her.

We wrapped up our week by riding the ski lift and revisiting the Natural Tunnel. We retraced our favorite sights and activities.

There were moments that don’t fit into this narrative such as rocking on the back porch while watching a quick down pour. Or, cooking out with friends (during the couple of nights they joined us) until late in the evening. And, gazing at the most stars I had ever seen each clear night.

10614411_10101893490037659_2810308428759719378_nAfter a week like that, I am fighting back tears now that we are home. It’s not so much being home that is upsetting because we live in another beautiful area of the state.

Instead, it’s the thought of returning to our normal. Back to arguing with insurance, back to navigating a confusing and overwhelmed medicaid waiver system, back to answering people’s questions about Charlie, back to patiently nodding at unsolicited advice, back to therapists making unrealistic home therapy suggestions, and back to sitting in countless doctors’ offices.

I live a strange polarity. I detest many of the things in my daily life. However, I wake up each morning so grateful for the life I have.

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When Words Fail Her

I can only understand about 25% of what Charlie says. That is, if she says anything at all.

A lot of the time she grunts or “talks” with her mouth closed. Other times, it’s garbled gibberish. With context clues and effort, I can understand about 25% of what she says.

Tonight, my husband realized that all of those sounds have meaning and we can’t understand most of them.

Charlie was climbing on him and playing with a Little People’s tricycle. She rolled it up his arm, put it on his head, and exclaimed some garbled words. He dismissed them and continued flipping through the channels.

She repeated her gibberish over and over. He realized she was trying to tell him something. After asking her to repeat it a few more times, he deciphered she was actually saying, “It’s a hat!”

He was so impressed with her. But, at the same time, so saddened. He realized her thoughts and receptive language is fine. Her body (more so her mouth) will not do what she wants it to.

Although, I already knew this. It makes me sad as well when I think about it. I can’t imagine the level of frustration, isolation, and whatever else she may feel. I wish her fine motor skills were decent enough for sign language.

However, I try to remain positive and remind myself that she seems happy. The whole ordeal doesn’t really appear to bother her. She is one of the most joyful and enthusiastic people I know of.

Before she went to bed tonight, she said, “nigh” (good night) for the first time. Then, when I told her I loved her, she leaned in and kissed me.

I guess maybe she does communicate in her own way.

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We’ve been visiting Chuck E Cheese’s a lot lately. It’s an easy and fun way to work on most of her therapy goals.


All Quiet On The Royal Front

I haven’t had the urge to blog lately. I want to say it is due to lack of happenings. However, that’s not true. There is just as much occurring now as ever. Therefore, I think the change may be in me. Those big emotions are not stirred up on an almost daily basis. I may be settling into my normal.

Oh, insurance does not want to cover a medical necessity? I’m used to that. What’s that? The medicaid waiver process is a giant snafu? I kind of expected it. Are those people judging us as we go about our routine? Shrugged off. Another diagnosis? I saw it coming.

Don’t mistake me. Like anyone, some days are better than others for me. I do struggle from time to time. I continue to feel disconnected from the “regular” parenting world. But, those powerful consuming emotions are not an every day thing anymore. Maybe, more of a once or twice a week kind of thing.

The dust is finally settling after our world was rocked by Charlie’s premature arrival.

On a side note: Today was the first day that I looked at Charlie and saw a little girl instead of a baby. I don’t care what people say. This time did not fly by. It felt like the longest two years of my life.

I happily tossed out the bottles (she takes her formula through a sippy cup now). I was thrilled to take the rail off of her crib. I look forward to the (very far off) day without diapers.

Bye bye baby and hello little girl!

Taken earlier today.

Taken earlier today.


The Good, The Bad, And Charlie’s Hair Cut

The past week or so has been rather uneventful in our world. Nevertheless, there have been things to celebrate, things to curse, and well… Charlie’s odd hair cut.

The good things: First, the letter of medical necessity did the trick. Charlie’s insurance finally approved coverage of her formula. Second, this is the last week of my doxycycline prescription (which means I can safely endure sun exposure again in a few days). Finally, Charlie has been progressing forward in her skill set (most noticeably in gross motor skills).

The bad thing: The Medicaid waiver process was a nightmare that included lost files, lost applications, and an overworked social services office. But, it was nothing that an entire afternoon spent at the social services office couldn’t put back on track.

Charlie’s odd hair cut: Charlie does not like having her hair cut. She alternates between thrashing her head forward and backwards and shaking it side to side while saying “No, no, no, no!” I decided to just cut her hair at home after the first time she did this at the hair dresser and got a bad hair cut. For her last few haircuts, I cut her hair and it kind of worked.

Charlie’s dad wanted to see if he could do better. Even though I warned him, I don’t think he was expecting her dramatics. His first cut was a clump of bangs almost at the hair line. He was horrified. I laughed and reminded him that it will grow back.  Now, Charlie has extremely short bangs and will probably get professional haircuts from this point forward.

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Charlie went to the county fair this week. She had her first frozen banana and played in a baby pool filled with corn.


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