Monthly Archives: January 2014

We’re Not On Lock Down But…

Last year was our first and only season of lock down. We have been lucky as far as Charlie and communicable illnesses are concerned. This year, Charlie’s pediatrician said that lock down was not necessary. Despite our freedom, I do not take any chances.

I am that mom that always has a bottle of hand sanitizer, disinfects every inch of a shopping cart with those wipes at the store entrance, rigidly follows the doctor’s vaccination recommendations, and dodges visibly sick people like it’s a sport. Charlie even knows how to rub her hands together after I spray sanitizer on them.

Our trip to the grocery store this afternoon was more of the usual precautions.  After I finished our shopping, I had to wait at the customer service counter for a special order. Charlie had settled in the pristine shopping cart and contentedly watched the shoppers around her.

Suddenly, I spotted a scruffy man carrying a case of beer headed in our direction. I assumed he needed assistance at the customer service counter and moved the cart as I stepped aside. In the blink of an eye, he tossed the beer aside and rushed Charlie!

I was horrified as I smelled the heavy cigarette smell emanating off of him, heard his cough, and saw that his hands looked like they hadn’t been washed in a week. Charlie saw the strange man headed for her and started to whimper.

I scooped up Charlie and shielded her with my body from the man as I begged, “Please don’t touch her. She’s sick.” That is the nicest possible way I have conceived to tell strangers to back off. I tell them SHE’S sick. The “It’s not you, it’s her” line. The man retreated and snorted, “If she’s sick than you should haven’t taken her out! I’m sick too!”

He conducted his business at the counter and left. He mumbled some unpleasant words at me as he passed to leave. The lady at the counter was annoyed at him and apologized to me.

When did it become OK for strangers to touch other strangers? Why is it wrong to tell people that one would prefer not to be touched? This is something I have often wondered and today’s experience has resurfaced the question in my mind. Why are their feelings more important than Charlie’s health?

We are not on lock down but I’m not messing around.

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Charlie’s Music Therapy

Lately, many readers have expressed curiousity about Charlie’s music therapy. In the following post, I try to answer the questions that have been asked.

After lock down last year, Charlie and I ventured to her first baby group. It was an experiment. She had serious sensory issues and her motor skill progress was at a stand still. I was looking for more ways to stimulate her in addition to Early Intervention. To my surprise, the baby group session went well… especially the musical portion.

100_1005_editedInspired by the success, I scoured the internet for a local baby music class. My web search led to a local non profit organization called The Community Music School of The Piedmont. The music school offers music therapy and a Music Together class as well as other programs.

Charlie was almost a year old but had the motor skills of a four month old. I was not sure she could keep up with the rest of the Music Together class. Plus, I was concerned about her low sensory threshold. I sent an email to the school and asked which program would be the best fit for Charlie. The response was an invitation to sit in a Music Together class and to meet the music therapist. After Charlie and I met the music therapist, I immediately knew that music therapy was where she belonged.100_1007_edited

Every Wednesday for the last nine months, Charlie has attended music therapy. She has benefited in several ways.

First, her sensory threshold has improved. The therapist has actively worked with Charlie on improving her tactile defensiveness and auditory tolerance. Charlie likes to feel the vibrations as she plays the drum, while the therapist plays the guitar, or the time a cello was played in her presence. The therapist also uses feathers, scarves, stuffed animals, and a bead bag in the musical play. 100_1030_edited_edited

Additionally, her motor skills have progressed. There have been a few times when something was not registering with Charlie in PT or OT. For whatever reason, she did not understand the skill the EI therapist was trying to teach. The music therapist teaches similar skills using musical instruments. In music therapy, it is like seeing a light bulb go off above Charlie’s head as she understands and performs the skill for the first time.

Finally, Charlie’s speech development has benefited from the music therapy. Before Charlie 100_1037_editedlearned to open her mouth to vocalize sounds, she grunted to fill in a pause while the therapist sang. Now, she tries to fill in a missing word with the few sounds she has mastered.  Charlie started “singing” before she tried to talk.

Whether Charlie progresses to learning an instrument or not will be a choice left up to Charlie. Music therapy is right for us. Charlie enjoys music therapy and gets quite a bit out of it. Sometimes, she says, “Yay!” when I pull the car into the school’s parking lot.

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Do You Know How Much It Means?

To The Other Mothers:

My baby’s first playmate and friend was a physical therapist. I have grown accustomed to being the one to play with my little girl instead of watching her perched on the sidelines.

Despite interest in her peers, the playground social scene is not easy for Charlie. She is tiny for her age, doesn’t walk yet, and is lagging far behind in speech. Therefore, she is mistaken for a baby and often ignored or climbed over.

This is where I step in. While other moms sit and talk to one another or engage with their phones, I’m squeezing onto platforms that are way too small for me and sitting in the midst of bouncing toddlers to help my little one play.

playingwithfriends_editedHowever, occasionally, there are days like today.

Another kid sees my little girl and includes her in the chase. Or, a bigger kid will help her up a climb or encourage her to try. Sometimes, they teach her how to eat pretzels or build with blocks.

You may not notice your kids doing these things but I do. Your kids teach her things in a few minutes that the therapists and I have been trying to teach her for weeks. Her eyes beam, her face lights up, and it makes her day. I get to sit back with the other moms and feel a little bit of “normal”…  which is rare in my world. When we go home, she tries new skills that she saw your kids model and she gets a little bit braver.

I appreciate you asking if it is alright for your kids to play with “my baby”. I want you to know that it is more than OK, it is what I hope for when I bring her out to play. I wonder, do you know how much it means to us?

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Another little girl used hand over hand to teach  Charlie how to play with the blocks. After the girl left, Charlie was able to do it on her own.


Swim Class Revisited

As if things weren’t stressful enough, Thursday evening our furnace gave out. We are cramped into a hotel room while the furnace is replaced. The situation is not ideal but it is not bad. We have been making the best of things and that includes enjoying the indoor pool.

1555267_10101530665321299_1165636807_nA year has passed since we have stayed in a hotel with Charlie. She is scared of the elevator and is obsessed with the trashcan. Overall, she’s been well behaved. I can contribute much of that to the indoor pool and Charlie’s swim class.

I have written about Charlie’s mommy and me swim class she started earlier this month. Charlie loves the class. I, on the other hand, have to confront my public pool aversion and bungle out of a swim suit as I prevent Charlie from crawling through the puddles on the locker room floor. Just typing that makes me wince.

This weekend, I realized the many benefits of Charlie’s swim class. I knew that it has helped her progress towards walking, it is helping her get stronger, and has developed better body awareness. But, I did not know that I was learning from the swim class.

We have had Charlie in the pool each day of our stay to burn off excess energy.

Charlie’s dad took her for the first swim. He had no idea what to do with her once he was in the pool. I suggested many of the 46862_10101530665311319_1238993079_nactivities and songs from swim class. Charlie gleamed as they played. She showed how she could splash, kick, and “swim”. I showed her dad how to hold her in the pool. I know it sounds ridiculous. But, without the class, I don’t think we would have known how to get anything out of pool time with Charlie.

So yes, I hate having to lug everything to the pool for class. I am grossed out by public pools and the puddles in the locker room. I am exhausted by the time I haul Charlie up the stairs after class like a sack of potatoes. However, I’m glad that we are taking the mommy and me swim class and am pleased with the results. While it has been obviously beneficial for Charlie, it has its surprising pluses for me.

If anything, Charlie is one more step towards walking.


Another Snow Day

The day time temperature was about seventeen degrees yesterday and today. The air is much too cold for Charlie to play outside. I have enjoyed the break in our schedule. Charlie, on the other hand, has remained hard at play.

This afternoon, we ventured out for a doctor’s appointment and a lunch date. While at lunch, Charlie revealed that she had learned to scribble!

One more skill mastered. That’s my girl!

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What I Want Others To Know About Raising My Preemie That I Haven’t Seen On Other Lists

I have read many great lists of what other preemie parents or special needs parents want others to know. Most of the time, I nod in agreement while I read these lists. However, there are a few things I would like to add that I have not seen on these lists.

1) I have the inability to picture life past next week. Many parents already have hopes or ideas for their children’s future. I don’t. There are still so many things unfolding and developing that I have no clue what next month holds for us.

2) If Charlie misses many therapy appointments or doctors’ appointments, I worry about the long term repercussions. If I slack off on following through with doctors’ recommendations, I regret it and think about the possible negative impact. Our schedule is not filled by frivolous activities. As much as I would like to, I can’t “slow down” or “take a break”.

3) When I vent frustration about our interactions with the outside world, it is just that. I am not upset with anyone or anything in particular. Mostly, it is sadness that we face obstacles or Charlie struggles with things other people don’t think about.

4) Parenting a special needs child can be an isolating experience. Sometimes (although, not lately), I feel disconnected from those around me. Kind words go farther than imagined. My favorite words to hear from others are, “I care. I am listening.”

5) Yes, it is a tough road we are on. Yet, I’m so grateful that she’s here.

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Charlie checks out last night’s snow fall. There may be snow play if it warms up later.


Thank Goodness For Snow Days And Friends

Like many parents do, I’ve been feeling overwhelmed with life. It seems like our smoothly choreographed routine has been disrupted as things snowballed (and I’m not referring to the weather).

The problems started with the complications of my upcoming surgery. Then, Charlie needs new ankle foot orthotics (which is a lengthy and time consuming process this time), Charlie’s dad has a couple of upcoming business trips, and I’m struggling to keep up with Charlie’s demanding therapy routine and medical appointments.

I felt like I was drowning and have been irritable to say the least.

Fortunately, our scheduled therapy activities were canceled today by the snow storm. I used the opportunity to catch up with household chores. As I cleaned this afternoon, friends from my moms groups unexpectedly messaged me to help out with the logistics of my impending surgery. Finally, I have a foot hold.

Yesterday, the next month felt like an impossible challenge. This evening, I find it manageable. It will be tough but it can be done.

Thank goodness for friends and neighbors.


I Was Thrilled With “Ma ma”

Charlie has a speech delay. Things have progressed slowly as we focused on her feeding challenges. I was thrilled when she started using “ma ma” consistently a few months ago.

More recently, she has been speaking what we refer to as “gibberish”. She looks at us as if to say something and proceeds with a sentence length of garbled sounds. We respond as if we understand but mostly dismiss that it truly has any meaning. Things changed on Friday when she revealed to us how much she really knows.

Charlie and I were rough housing in her play room after dinner. I grabbed a toy from her and exclaimed, “I’ve got it!” She pounced and squealed out, “Ah gonna git it!”

I froze with shock. Did I really hear that? Did she just say a coherent sentence? Is it just wishful thinking? Charlie’s dad was in the next room. Perplexed, I called out to him, “Did you hear that?” He confirmed that he did.

We had a feeling that Charlie understands quite a bit. However, we could not be sure. While I think she has the words, her oral motor skills seem to be the source of her speech delay.

Now, we strain harder to understand her “gibberish”. Friday evening was definitely the encouragement we needed to continue working on her sounds. It won’t be long before we complain about her talking too much.

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A Date With Fear

One of the many things I lost when I became a micro mom is my feeling of safety. As I have previously written, there was less than a .5% chance of my pregnancy ending like it did. Now, I find myself afraid even with the odds overwhelmingly in my favor.

The date for my cholecystectomy (gall bladder removal) was set today. The procedure is one of the more common surgical procedures and is an outpatient procedure in most cases. There is a small risk of complications.

I find none of this comforting.

Instead, I think of the odds games that we have lost despite things being in our favor. I am reminded of the battles we’ve won against the odds. I no longer have the thoughts of “It won’t happen to me” or “That kind of stuff happens to other people”. I very well know that it can happen to me and it frightens me.

Logically, I know things will turn out well. I want to feel better. But, the emotional side of me is terrified.

I wonder when my fear of the small percentages will dissipate. How do I get my safety back?

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This afternoon, Charlie and I spent some time playing in the Shenandoah River State Park.


Coriena Into Easy Answers

I know, I know… please forgive the alternate spelling of Corrina.  I could not resist the esoteric title. It is a fitting description of my week.

This week, I’ve run a social circuit of sorts. First, I had coffee with one of my very first friends from college and fellow RA, Coriena. It was nice to catch up, reminisce, and see each other again. She met Charlie for the first time.

Later in the week, I spent time with two friends from my moms group. While such visits further stretch a schedule that is already taut, they have proven to be crucial for my sanity. In my exhaustion, I frequently underestimate the value of socializing with others.

Today, I had an appointment with my primary care physician in which many questions were answered. He had been out of town over the holidays which left my questions at the mercy of doctors who were unfamiliar with my case.

Today, I got my answers. First, I will need another round of prednisone to conquer this current asthma flare up. Second, the conclusion has been reached that I will have my gall bladder removed. The first issue obviously has possible implications on the second.

I have my fingers crossed things work out. I’m exhausted from not feeling well the past few months. I have really been struggling to keep up. I find it interesting that simply acknowledging those facts make the situation more bearable.

This is how we passed the time while waiting for my prescriptions to be filled.


Preemie Babies 101

Today’s post can be found (as a guest post) on Preemie Babies 101.

During my baby’s three month NICU stay, I quickly learned the many adages that are passed around the NICU.  Some were aggravating such as “It’s not a sprint, it’s a marathon.” Others, like “Never trust a preemie,” were daunting. In addition to these, there were two unwritten rules engrained on my psyche that I unknowingly did not understand at the time. I would have been spared the sadness that came with losing yet another dream if I did. These rules were “Every baby is different,” and “Don’t compare babies.”

Essentially, they possess the same significance. I suppose the message is important enough to justify the need for two sayings. Nevertheless, the intended meanings were lost on me. This is how:

Read More….


Swim Class, Color, and Change

I greatly appreciate everyone who weighed in on yesterday’s post, Therapy Burn Out. It’s always nice to realize that I’m not the only one who feels burnt from time to time. Today brought about some needed change.

Charlie and I started a “Mommy and Me” swim class last week. Her first class was during the two degree weather. Understandably, she was too cold to enjoy it and mostly clung to me. We vacated the pool early and sought warmth.

Today, we had our second swim class. Despite Charlie’s initial hesitance to get back in the pool, she loved it. She squealed with delight as she splashed and learned to kick. It was a break from our usual monotonous routine.

Afterwards, Charlie napped while dad worked from home. I took advantage of the lull and went to get my hair trimmed.

For those who don’t know, I had long hair before the NICU. In order to simplify life, I had it cut off to an extremely short length. I kept it short while Charlie was an infant.

Now, I’m in the process of growing it back out. Getting a trim has become rather robotic. Every few months, I get my hair trimmed. I climb up in the chair and say to the hair dresser, “I’m growing it out. Please clean it up and prevent a mullet from growing.”

Today, I was prepared for the routine. I sank into the chair and just wanted it to be over. Fortunately, I had a chatty hair dresser. Our conversation from my initial comment blossomed into a long discussion of all the times I cut my hair off. I made the comment, “I’m bored with my hair. I wish I could dye it. However, the dye won’t take since I’ve been taking prednisone.”

The hairdresser confidently declared she could color my hair. I was skeptical as she explained how she would do it. After hearing the details, I asked to see the color swatches. I pointed to one and said, “I kind of like that one but I like it brighter.” She insisted she could make it as bright as I wanted it and suggested I use a darker base color. I decided to give her plan a try.

The end results? Not only did she successfully color my hair but it is the best color I have ever had. I am thrilled with it. Most importantly, it was a little bit of change I needed. I feel like it gave me my second wind.

Currently, our world is full of restrictions, routines, and rigid structure. I think it is important to break out of that often enough to avoid getting stuck in a rut.

My friend, Sally, said that I couldn’t write a post about color change without a selfie. The color would not photograph as bright as it actually is. I think that Charlie takes the best selfies.

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Therapy Burn Out

The developmental pediatrician has stated that Charlie is the type of baby the Early Intervention system was made for. I have no doubt that her participation in Early Intervention is a key reason as to why she is doing so well. While it works well for Charlie, I question if I am the type of parent Early Intervention had in mind.

Charlie has participated in the program for over a year and I am burned out.

I have not been feeling well since Thanksgiving. Caring for a child when feeling run down and ill is tough. It is about all I can handle. I don’t want the additional burden of having to actively participate in her multitude of therapy sessions. Nor, do I want to be responsible for her on going therapy.

While I really like a couple of her therapists, I don’t want regular visitors. Even my friends don’t visit frequently or a regularly. These regular early intervention visits feel intrusive. It feels like we are under the microscope even though I know we are not. It is like we’ve traded off part of our privacy for therapy services.

If I feel this way because I’m under the weather, it makes me wonder how working parents feel about EI. Are reasons like these why other parents take “vacations” from therapy?

I know it is important that Charlie receive her therapy services. I am not sure if the current is still the way that is right for us.

Questions for special need parents: Have you taken a break from therapy? Did you change things up? What works for you?

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Foiled Again

Today, I have been holed up in the bedroom reading and folding laundry for the majority of the day. I haven’t been feeling well and was in need of some downtime. My husband graciously offered to watch Charlie this evening.

I was in the middle of proof reading today’s post when it was preempted, once again, by Charlie.  Neil (Charlie’s dad) sent this video to me from the living room.

As you can see, she has taken more steps! She is past her most recent ebb and has hit a developmental flow.


The Contest

A short post today, I had a procedure this morning and I’m still groggy from the anesthesia.

For those of you wanting to know how the Virginia State Parks Photo Contest turned out, I direct you to the contest results article.

In short, we won! However, we certainly wouldn’t have won if it weren’t for the random kindness of strangers and the graciousness of our closest competitor.

I look forward to our week long park stay. Thank you to everyone who voted for and supported us.

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It is also a vacation for Charlie’s big sister.


First Steps!

With the first swim class, the state parks contest, and everything else, it has been quite the week in our household. Today’s post was going to be about Charlie’s first swim class. However, Charlie decided to change the subject. She has taken her first steps!!!!

Unfortunately, I don’t have any photos or videos to post because Charlie is sneaky. It started earlier today. After her first swim class, she had speech therapy. The speech pathologist and I discussed the new sounds Charlie is working on while Charlie played. Suddenly, Charlie decided to stand from crawling without support.

I stopped mid sentence and blurted out, “She hasn’t done that before.” We marveled as Charlie stood there oblivious to what she had done. She stood for a few seconds and peered around like a meerkat. She became wobbly, sat down, and returned to crawling on the floor.

Later, I answered an email while Charlie placed a shoe on and off the coffee table. When I looked up, she was midway between the table and my chair. While she held on to the shoe with both hands, she unsteadily wobbled towards me on her feet and took about four to five steps.

It’s progress… and I couldn’t be more thrilled.


The Kindness Of Strangers

I had previously written a post about my entry into the Virginia State Parks photo contest. Like most tasks in life, I got far more out of the contest than its intended purpose.

In the previous post, I described making the realization of the amazing people that I’m lucky to have in my daily life. This weekend, I realized there are many strangers routing for us as well. I am humbled and in awe by the kindness shown by people who don’t know us or don’t have to care.

In addition to people who shared our story and wrangled up votes, I’ve received some very kind and loving messages. People let me know they voted, wished me luck, encouraged me, and…  I received this blog comment:

I saw your post and your story through a friend, so I shared with my friends and asked them to share with theirs. Then I shared it with a little local Mom networking group…. You have an incredible number of people out there (here) routing for you and your family. There will be experiences you may never get back from being a micro preemie Mom, but here’s hoping you’ll get to experience something exceptional for just being an amazing Mom. Good Luck.

Later, WordPress informed me the posts, A Truly Random Act Of Kindness and The Things We Do For Love + Random Act linked back to my blog.  After reading the post, I was blown away. I could hardly believe it.

Who are all these wonderful people that care so much about a total stranger? How are they so empathetic to a stranger’s life?

The contest has been back and forth for days. It has been a tough battle. I have no idea if we’ll win the contest.

While I would like to win the week long cabin stay (it would be a dream), I won’t be crushed if I don’t. My experience in the contest has shown me how many other people care. When you add Charlie to that, I feel like I have already won.

To everyone that reached out to us and those that took a second out of their day to hit vote, thank you. You will never know how much it meant to me.

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This is another picture I took of Charlie while hiking that day. The contest ends Wednesday, 1/8 at 11:59 PM. If you’d like to vote, you can do so by clicking vote on the contest page located here. You can vote once every twenty four hours.


Swim Class

For our newest adventure close to home, Charlie will be attending swim class which starts this week. We were able to find a really good deal on a mommy and me swim class. Pluses to taking the class include: Charlie loves the water and it will help her progress on her therapy goals.

There is only one problem… I am not a fan of public water facilities. It grosses me out. I don’t even like baths because I don’t want to sit in the dirt, oil, and germs I’m washing off of my body.

Since we have the opportunity to do something Charlie loves at an affordable price, I tried to tell myself I’m being silly. I thought that I was letting the germaphobe preemie mom instinct get the better of me. To reassure myself, I consulted with the University of Google. The CDC fact sheet I found was not very comforting. 

Basically, I’m going to have to step way outside my comfort zone for this. That is the thing about raising Charlie. She challenges me to be braver, better, and try things I’m not comfortable with.

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The Cost Of It All

Financial cost is a topic that I frequently see discussed on medical ethics blogs and rarely discussed on the preemie parent blogs. Although, it is a regular topic of conversation on the closed preemie boards. An exception to this generalization is the Love That Max post titled How Much Do Therapies Cost For Your Child With Special Needs.

I can tell you from our experience it is expensive to have a preemie and/or a special needs child. Even though our household has a respectable income and we have “good” insurance coverage for Charlie, our budget is tight.

Where do these expenses come from? Therapist co pays (if covered at all), specialist co pays, re hospitalizations, diagnostic test co pays, lab co pays,  special formula (not covered by insurance), orthotic co pays, medicines with $50 co pays, dietitian (not covered by insurance), and other special equipment (such as therapeutic equipment). That is in addition to all regular expenses involved with raising a child.

Charlie is priceless to me and I would take on even more cost if I had to for her. So, like other preemie moms, I learned to fight automatic denials,  have become an expert in Charlie’s insurance coverage, and am sure to document everything. My husband and I make our clothes last longer, go without vacations or date nights (we haven’t been out on our own together since Charlie has been home from the NICU), and shop at outlet stores. Also, I am learning about health programs that are available as she grows older.

As lousy as it is to be forced to fight for the coverage we pay for or have to pay completely out of pocket for things, I consider us lucky. I have met many preemie moms that have lost their homes or been forced to declare bankruptcy. I have even met a parent that had to take their child overseas to receive affordable treatment.

I am not sure what the answer is but our health care system is broken. Even though we did everything we were “supposed” to do, I feel like the system failed us. We are not alone. The majority of people in this country are one medical catastrophe away from financial ruin. I want to know how this is a good thing for our country.

It is time there is pragmatic talk about agreeable solutions. Even with insurance, the American dream frequently dies with the birth of a micro preemie.

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Woodland Creature

Yesterday was the first day of a photo contest in which I entered a picture of Charlie. While I campaigned for votes, I talked to friends that I hadn’t spoken to in a while. There isn’t a good reason as to why I had fallen out of contact. I suppose it is a part of life (more specifically, special needs life) that it happens. With each conversation, I was reminded of how fortunate I truly am.

Contained within my smorgasbord of friends there are:

The friend that revealed her experience with a late walking daughter to help me feel less alone.

My show going guy friends (more like brothers) from my twenties that are now scattered across the globe but don’t hesitate when they are needed.

The friend that came to see Charlie at her sickest (without being asked) when I had stopped asking people to visit because no one would.

Our old neighbor who visited several times during Charlie’s NICU stay and has always been a friend.

The couple that visited me in the hospital before Charlie was born, while Charlie was in the NICU, and continue to socialize with us regardless of our baby in tow.

There are the friends from my past that good-naturedly voted without a second thought.

The couple that included a stop to visit pregnant me in the hospital in their itinerary while in town and have been there for us ever since.

One of my newest friends, a CP mom, that assists in problem solving and listens patiently because she knows exactly how it feels.

My friend that will let me vent for as long as needed, is not afraid to say “That stinks”, and will laugh with me about life afterwards.

The friend who told me I was the sister she wished she had.

My preemie mom friends that are quick with understanding and encouragement whenever needed.

The amazing women in my moms groups who have their individual strengths and are a force to be reckoned with collectively.

And there are many more that cheer for us and Charlie.

At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things. However, I’m glad I did. Not merely because I want to win (which I really do and we are so close to first). Rather, I was reminded how lucky I am to have so many incredible people in my life. Unfortunately, sometimes I make the mistake of forgetting this as we go about our daily lives.

1238743_10101493155581119_1602306659_n This is the picture of Charlie titled Woodland Creature that I entered into the contest. It can be voted on by clicking vote here.


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