2012

Looking back, this year has been packed full of so many changes for both Emma and me. It's hard to believe that so many changes could happen in one calendar year, but here we are at the end of 2012 looking back at how far we've come.

After all the presents, the birthday girl enjoyed some yummy milk!

I think back to January when Emma was unable to see her surroundings and I am astonished at how much her vision has improved. She was moved into her third and final helmet. At that time, she was seeing her Occupational Therapist (OT) six times a month and her Vision Impairment Therapist (VI) twice a month. At that time, she was working to gain the strength to hold her head upright when held in a supported sitting position. In February, we celebrated her first birthday. The best birthday gift was she began showing signs of sight. March was filled with doctor's appointments and therapy. Emma also had her most recent MRI on 3/14/12 so we are looking forward to the next one to see her progress over this last year. Her cardiologist also stated her ventricular septal defect (VSD) was healing well and he removed her 30 minute time limit for meals.

My little Easter bunny.

April was an important month for both of us - for Emma because she received her feeding chair which made it possible for her to sit unassisted during meal time so that she could start working on learning how to eat like a big girl. It was also the month my divorce finalized in court - something I had been looking forward to ever since Emma's father told me he wanted the divorce on 12/1/10. In May, we went to her first Neonatal Intensive Care Unit (NICU) Reunion which was an incredible experience. Seeing all of those amazing children and their families gave me so much hope and encouragement that Emma and I were doing everything right. June was a normal month of therapy and growth. She began to show signs of tolerance as her therapist and I began working with her on assisted standing. She has always been a good sport about everything we help her with, but Emma did sneak out to see her first movie in theaters as a nice stress reliever.

 

July was busier as she got in the pool for the first time to prepare for the beaches in Hawaii later that month. It was our first vacation together and one I will never forget! The best part was when she laughed for the first time. Emma also really started doing well sitting unassisted for longer periods of time. In August, Emma had her picture taken to be a part of the Gallery of Hope. Visually she showed improvement with a decrease in her nystagmus (tendency for her eyes to shift side-to-side constantly which impeeds her vision). At the end of August, Emma switched VI therapists. She took some time to warm to her new therapist, but she has been doing well with her every since. Orally, she began eating a new brand of baby food with chunks in it that she would tollerate. In September, the best thing that happened in Emma's world was she was phased out of her last helmet! Baby Stig would be but a faint memory only proven by the many pictures that I have of her in them. She had also worked up her endurance for sitting unassisted to over 15 minutes.

October was one of the best months for me for many reasons. Emma began Physical Therapy (PT), which would allow her OT to work primarily on her oral challenges and give her more support on both her motor and oral skills. This meant Emma's schedule went from eight sessions a month to ten - OT four times a month, PT four times a month, and VI twice a month. Emma also began to show some real independence at times by pushing hands away that were trying to feed her something she didn't want as well as grabbing hands and pulling them to her when they were trying to tickle her. And of course, I turned 30. I know the decade ahead will be better than the one I've left behind so I'm anxious to get started! November was another big month for Emma as she began Speech Pathology Therapy (SP). This added two more sessions of therapy a month to Emma's ever growing dance card. To accomodate all her thearapists and my work schedule, we ended up moving all thearapies to Tuesdays. This would make for a very busy day for her, but no more physically demanding than if they were spread out due to the focus of each therapy. We also took our second vacation together - this one was a road trip to Austin for the inaugural Formula 1 race. It was great to see how well she would handle road trips - which she did beautifully other than having a leaky diaper less than ten minutes after we left the house. We also went to see the unveiling of the Gallery of Hope that she was a part of - which ended up on the local news! Everything that happened this year just kept building all the way through December. At this point, Emma can say twenty words and understands and additional eighteen more words/phrases. And then, to top off everything, I had Emma for Christmas. That said, not much else I can say at this point to make this post better.

Looking forward to a wonderful 2013!

Merry Christmas!

Christmas is probably my favorite time of year. I love the spirit of the season and all of the things that come along with it (even the ones that are rare in Texas like snow). I decorate my house with a tree or three (yes, three - the 7.5' one in the living room, the 4' one in Emma's room, and the little one in my room), a garland over the fireplace with stockings, snowflakes on windows, wreath, fire in the fireplace, and usually holiday cookies of some sort ready for Santa. Last year was Emma's first Christmas and I didn't put everything out as I normally would have because I was a little busy and she wasn't able to see at that point yet. This year, I wanted her to have the full experience because she can see. With a little help, I got everything decorated. I wasn't supposed to have her for Christmas this year as it was going to be her father's turn to have her. But to my excitement, he offered to bring her back on Christmas Eve so she could be with me and my family to celebrate! I don't need anything under the tree or in my stocking this year because I have the greatest gift of all - my daughter for Christmas!

Picture in the outfit I bought her to wear Christmas day.

Now that Emma is getting more curious about people, I wanted her to meet Santa for the first time. Lucky for us, he made a stop close by so we went up to say hello. I told him what a wonderful girl she has been and how she deserves anything he might have in his bag of presents. He assured me that she was on the "Nice List" and would be getting something very special this Christmas. When she sat in Santa's lap, she was very curious about who this new person was and why he had hair growing out of his chin. This new phenomena was perplexing to her and I could see her thinking about pulling the hair like she does with my hair, but she thought better of it. Didn't want to be taken off the "Nice List" so close to Christmas...

  

Hi Santa, I'm Emma. I have always been a very good girl. I know that cause my mommy tells me every day.

As for Christmas Day, we started our morning just the two of us talking about how Santa had come and enjoyed the cookies and milk we left out for him. Then we began opening the presents that she had under the tree and in her stocking. She needed help opening everything, so it was a team effort. Once unwrapped, there were bells to play music, crayons to color with, and so much more! Then we got dressed and ready for a fun filled day. Once we were ready, it was time to pack up the gifts in the car and head to my parents' house for breakfast and more Christmas time!

At my parents' house, there was a beautiful tree decorated with crystal and delicious food ready to eat. We enjoyed breakfast and had some family time before we got to the gifts. Emma was a very lucky girl this year as she got some wonderful clothes and toys from her grandparents. Her aunt, uncle, and cousin got her a cupcake piggy bank and some great toys as well. Once we were finished, it was time to go home and take a short break before we packed up and headed to my grandparents' farm to celebrate with the whole family.

During the break, it began to snow. Emma had never seen snow so I was excited her first Christmas that she could see would be a white one. We went out to see the snow and she was a bit unsure about it. She didn't like the wind so it was difficult to see what she thought of just the snow. Then it was time to feed her and pack her up for our next adventure! The drive there was white and slow, but absolutely beautiful. The whole ride to the farm, I was telling Emma stories about my childhood experiences with snow and all the fun things you can do with it.

Once at the farm, we enjoyed family time followed by delicious food again. My family is great about putting on a holiday with amazing food and this Christmas was no different! After stuffing ourselves, it was time for the presents. And what wonderful presents there were - Emma received so many things off her wish list that I'm going to have to go through and see if there's anything left to buy. Her bathroom is getting a facelift with fish everywhere! New towels, shower curtain, bath mat, and much more. She also got some wonderful books and puzzles that I know she'll love. With such an amazing family, what more could a little girl wish for? She smiled and had no complaints... Other than having to wear shoes and socks.

After we got home safely, it was time to unload the loot and get Emma ready for bed. But after she ate and I read her one of her new books, she was so sweet and snuggly that I couldn't put her down. She fell asleep in my arms as we sat in front of the fire and I held her for about 30 minutes before finally laying her down for the night. Can't wait to tell her about this Christmas in the years to come.

Merry Christmas to all, and to all a good night!

A Mother's Love

Recently, I read a post on Hydrocephalus Association by a woman that is slightly older than me who has a twin sister with hydrocephalus. She wrote the article for her sister to thank their mother for everything she has done for her sister. You see, her sister is not able to speak and can't express the gratitude she has for her mother in that way. It was short and sweet, but powerful and hit very close to home. Emma can speak and is diligently learning to communicate; but currently, I can't ask her if she is hungry, thirsty, uncomfortable, feeling sick, or anything of the like. Like the mother I read about, I can read my daughter's face and posture to know when she is happy and when something is off. It takes a sensitive heart to be that vigilant to always be looking to ensure that you don't see signs of pain, discomfort, or displeasure on your child's face. It's one of the reasons I still am not great about leaving my daughter to go to work or having her leave to spend time with her biological father. I can't see her face to know she is alright.

But this post also made me think of my mother and all of the things she did for me. And like the sister the article was written for, I too can not thank my mother verbally for all her support and sacrifice. I think that is also part of the reason I hold on so dearly to my daughter: the bond we share reminds me so much of the bond I had with my mother before she passed away just shy of my sixteenth birthday. Like Emma smiling when she hears my voice when I get home from work, I remember the feeling I had when I heard my mother's voice. It didn't matter if it was first thing in the morning and she was waking me up for school (which was never an easy task as I have never been a morning person) or in the evening during homework and dinner, her voice had a calming effect on me. After she passed away, I was so afraid of never hearing her voice again and forgetting what that felt like. I took the answering machine for the house that had her voice recorded on it and would play it over and over at night before crying myself to sleep. I no longer have a memory of what her voice sounded like to think about, and I wish I did. But now I have Emma's voice to make me smile and clear my head of any stress or frustration I may have. As soon as I walk in the garage door and see her smiling face or hear her happy voice, my heart melts and I'm calmer.

My Mom enjoying Alaska

I now understand, more than ever, what a mother's love is: it is unwavering and unending, calming and supporting, selfless and significant, life changing and unforgettable. I currently have had more years on this earth with my mother than without and I still remember how it felt when she hugged me as if to say, "I love you and nothing could ever change that."

Be Thankful

November is a month to be thankful and to recognize the important people in your life that make it better. Emma is on the top of that list for me. She inspires me to be a better person every day, even when I struggle because of things like stress. During last month, I struggled at times with various things like many do. It is easy to get overwhelmed about some of the little things when your bills are three times the norm from one month to the next or you have more work to do than hours in a day. This is usually the busiest time of year for me and this year was more so than usual at work as I had taken on a different role with more responsibilities. In addition to those stressors, sometimes I deal with negative people that willingly cause harm to others with what they say/do and feel their actions are justified and even deserved. I've learned that when other people cause me stress, I have to accept that I can't change them. I can only change me and how I let their words/actions affect me. It is easier said than done, but I am getting better about it.

When I need a pick-me-up, I turn to my support system. Outside of my family, which is the foundation of that system, I have a small close group of friends in my circle. I keep it cozy for two reasons: 1) I only keep dependable, honest, and positive people close and 2) I am more comfortable that way. Everyone in my circle of friends is a person that I know I could call at any hour for any emergency and they would help me any way they could. Those friends are not easy to find so I hold them near and dear to my heart. They make my life better, and for that I'm eternally grateful.

Thanksgiving Day with our family - my little Marilyn Monroe enjoying the fan!

As for my dear, sweet Emma, she has been working hard and making great progress. She is handling her full dance card with grace and stubbornness. I know, an interesting combination. She has all of her therapies on Tuesdays now and has between 2 and 4 each week. Needless to say, she is usually pretty tired come bedtime on that night. But she works hard so she deserves all the snuggle time she wants!

Emma has been working diligently with her four therapists (even when she really didn't want to) and getting stronger every day. Her Occupational Therapist (OT) has been working with us on having Emma eat more textured foods and she is starting to come around on it most days. The Vision Impairment Therapist (VI) has been working to get Emma to be more willing to explore things tactfully that she sees which is a challenge because she is resistant to hold or even touch new things. Her Physical Therapist (PT) is working on helping Emma learn how to get in and out of a sitting position on her own safely as well as standing next to the couch ottoman. The Speech Therapist has been working on word association with Emma to increase her vocabulary. At twenty-two months old, Emma can currently say sixteen words and understands eighteen other words/phrases! With so many goals in so many different aspects of her life, I don't see how Emma keeps things straight in her life without the use of an iPhone like her mama. Guess it is a good thing she has an iPod - now we just have to get her using the calendar app. Scary to think about, but she is already a texting fiend so I'm sure it is only a matter of time!