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!

Therapy

Emma had her six month review for her therapy on September 12th. Her coordinator and current therapists agreed that she should be evaluated for both physical therapy (PT) and speech therapy. I'm happy to say that she had her PT evaluation and qualified! She began working with her PT October 16th on her new goals of kneeling/standing while holding on to something like the couch as well as getting into a sitting position on her own. She was also evaluated for speech therapy on October 26th and qualified for that as well. Her first session will be on November 13th. I'm excited to have that therapy begin as well because Emma is a very enthusiastic babbler; we just need to see if we can get her to form more words and use them in context. She is learning her body parts well - here's a video of her progress.

I can't wait to watch the progress continue! This also means, with PT starting to work on her motor skills, that her occupational therapist (OT) will now be able to focus on her oral challenges - moving off the bottle onto cups or straws and eating table food of any texture. I am thrilled at the progress she has made thus far but am also having a hard time containing myself at the thought of her becoming mobile and eating like a big girl. Her PT told me that with her sitting on her own before age two, there was a good chance she would walk in the future. I know there are going to be bumps and bruises along the way, but I'm actually looking forward to her throwing food and showing me some attitude because it will be part of the development of her personality that I already love and adore. Not necessarily the better part, but an important part nonetheless for when she becomes able to start telling me she doesn't like something, she will also be able to tell me when she loves something.

Having her express herself is one of the things I look forward to most. Although she can say "mama" and does so happily, she hasn't used it in context yet. I am looking forward to a time where she will call for me when she wants me to see something or just to have me near. She has recently began making kissing noises with her mouth when I kiss her on her cheeks to prompt me to do it again. Her other new accomplishment is that she is now waving when you say "bye-bye" to her. It is funny to her therapists and me when she starts waving bye-bye to her therapists during therapy. It is almost as if she is telling her therapists that she feels she is done with therapy and they are free to leave. We all laugh because Emma is usually smiling when she does it cause she knows waving is a good thing.

All of these changes with therapy and her progress just feed my optimism and make me so happy. To have the chance to feel the bond I know we have grow stronger by the physical connection of hugging and kissing with meaning is becoming tangible and my optimism is growing. It can only get better from here!

Talking about Hydrocephalus

Recently, on my way to dinner, I was approached by a gentleman who apparently knew the people I was meeting. This is something I'm used to when dining at places where I'm considered a regular in my hometown. He walked up to me, as I was carrying Emma inside from the car, and with a kind smile he said, "So this is the baby that is really sick." I was deeply offended and even disturbed that this stranger had greeted us with such offensive words and that he saw no fault in his salutation. After a short pause to collect myself, and to keep from saying the words that initially entered my head, I responded, "No, Emma is fine." He looked confused by my response, but I felt it best not to continue the conversation. I had no desire to try to explain Emma's story to this person whom I felt would never see Emma as anything more than a "sick baby."

I continued to walk into the restaurant, but couldn't get the incident out of my head. Later, he walked by our table and said hello to one of the people in our group. I chose to ignore him and continued to play with Emma. After he was gone, I asked the person he knew in our group who he was and told them about the incident that transpired in the parking lot. They stated they didn't know his name, but they had seen him there before and that he must have overheard past conversations.

This troubled me as well because now I was wondering what was said in those conversations that could have made this man think he could ask that question and not offend me. I couldn't assume that the conversations he overheard gave him that lack of sensitivity toward my life with my daughter. For all I knew, he could have terrible people-skills and have no understanding of social etiquette, but it still made me wonder about what other people I know say when they try to tell others about Emma. Rather than being hurt by the words this man chose, I felt it would be better to try to give the people in my life the words that will accurately describe my sweet baby girl.

First, Emma is not sick. Hydrocephalus is not a disease and is not something you can contract from another person. Hydrocephalus is a medical condition where there is either an overproduction of cerebrospinal fluid (CSF) or an inability to drain the CSF from the brain due to either a blockage or deformation of part of the drainage system in the brain. Some people, like Emma, are born with it while others develop hydrocephalus later in life. That said, everyone that has hydrocephalus is affected differently. In Emma's case, she has congenital non-communicating hydrocephalus - which means she was born with it and the ventricles in her brain do not provide a free passage of the CSF through them. Even another child born with congenital non-communicating hydrocephalus would have potentially different challenges to overcome, and because it is dealing with the brain, the severity of the challenges would be likely different as well. Some individuals will be able to completely overcome some, or perhaps all, of their challenges while others will not. It is unknown what limitations, if any, a child born with hydrocephalus may have. That is why it is important not to place limitations on those individuals when you talk about their future capabilities. You have to allow them to reach every milestone at their own pace and support them on their journey. If you don't believe in them, they may begin to doubt themselves as well, and accept that they may never be able to overcome their challenges and reach their full potential.

At times, it seems to me that some people struggle with knowing what to say or do around Emma. I can understand their apprehension, which most likely stems from fear. Everyone experiences fear, and for a plethora of reasons - I am no different. I have feared many things along this journey with my daughter, but when I see the strength Emma displays every day, my fears subside and I fill with pride. With the support of her family, medical team, and therapists, Emma has consistently improved. She may have to work harder than other children her age to achieve a task like sitting unassisted, but she is getting stronger every day.

Baby Stig

Emma Lee developed plagiocephaly, also known as an asymmetrical distortion of the skull, after her shunt surgery when she was two days old. Once the pound and a half of excess cerebral-spinal fluid was no longer in her head, both her over-stretched skin and the plates of her skull overlapped in several places. She had several flat areas; particularly on the back side of her head. She also had significant towering around the occipital fontanel (the soft spot on top of the back of her head). This towering made the occipital fontanel much greater than normal – surpassing the size of the anterior fontanel that is typically larger. For most children, the occipital fontanel usually closes in two to three months; at 19 months, Emma's is still open. However, it has been shrinking in size thanks to her STARband treatment from STAR Cranial Center.

Emma was first referred to STAR by her neurosurgeon on March 24th of 2011. At her consultation appointment on April 8th, they took a three dimensional scan of her head using the STARscanner to see if she qualified for treatment. According to health insurance policy: unless the distortion in shape is at or above a certain level (and different carriers may have different levels), it would be deemed cosmetic and not covered. Thankfully, Emma qualified. Her number (which is calculated by taking the difference between the diagonals of her head from a bird's eye view) was about 1.75 times the level that insurance required. Given the costs of the three separate helmets she has required, we wouldn't have been able to afford the STARband treatment that Emma has received if it had not been covered by insurance.

 

Emma at two and a half months old before treatment.

Children must be at least three months old before they can begin this treatment. There is always hope that repositioning can eliminate and correct any issues with the shape of a child's head, but in Emma's case, it wasn't enough. So on May 10th, she was rescanned and the new information was sent off to have her first helmet made - all white - just like the Stig from Top Gear. Much to my surprise, the lady that was going to be her Cranial Remolding Specialist was a friend I went to school with growing up. We had lost touch, as it often happens, after leaving for college, but she was always so kind and had such a good heart that I knew Emma would be well cared for. On May 23rd, she went in for her initial fitting to begin treatment with her first helmet.

First pink elephant in the herd.

The challenge we were faced with, that most patients aren't concerned about during this treatment, would be to watch her shunt and make sure there was never any pressure put on it from the helmet. This required frequent removal of her helmet to look at her skin for pink and red marks resulting from the helmet impacting the shunt. Most children wear their helmets twenty-three hours a day without any need to remove it for spot checks. But due to the fact that Emma's shunt was so crucial to her health, it had to be monitored to make sure that the treatment never restricted the abilities of the shunt or compromised its integrity.

The first helmet was a bit of a challenge for everyone involved as her head was shifting so much that she was constantly having to come in for adjustments. There were a few times that red spots were found on her shunt, which caused us to discontinue use of the helmet until we could come in for adjustments (usually the next day). For almost five months, she had weekly adjustments to keep everything working properly. Even with all of the adjustments, and some ingenuity on behalf of her Cranial Remolding Specialist, the first helmet was not going to fit her long enough for her to complete the treatment. So, after a scan was submitted to insurance still showing that Emma qualified, she continued treatment in her second helmet beginning on September 15th. This helmet was white with pale blue and pink hearts on it. I decided to have something a little different (and more "girly"), because I wanted to be able to tell the difference between helmets when looking back on her pictures.



Reaching for her giraffe, trying to make new friends.

Once she got to the point that the second helmet was reaching its limits, STAR recommended a third helmet based on her special circumstances. Emma was close to being within the normal range, but due to her developmental challenges (not sitting on her own and struggling with head control), she would still be spending significant time laying down which could cause her to have new flat spots. After all the work we had put in to correct her head shape, I agreed with their recommendation and we submitted documentation to her neurosurgeon to approve her for a third helmet. At first, his response was that her head shape was close enough to normal that he didn't see the need for her to continue treatment. This would be the first time my skills as Emma's advocate would be tested. I simply asked the doctor why he didn't agree with STAR’s assessment since it made so much sense to me. He then stated that he didn't anticipate her getting much more correction from a third helmet, but inevitably agreed to approve the request. During the time it took to get the third helmet approved and processed through insurance, Emma outgrew her second helmet and was out of treatment for a few weeks. During those weeks, the scans showed her regression and the development of some new flat spots; assuring me that we were correct to push for the third helmet. Emma got her third helmet on January 30th of this year and it is solid purple. It lasted the longest of the three simply because her head wasn't growing as quickly as it was when she was younger. This also allowed us to keep her in it until September 20th so that she wouldn't develop any more flat spots this year.


First time in her ExerSaucer - not quite sure what to do.



After completing her treatment, it amazes me, looking back, how far she has come. When I see pictures of what she looked like right after surgery up until she began treatment at three months old, I can't help but be thankful that such technology exists and that we were lucky enough to be able to have it for Emma. Not only does her head look better, but more importantly, the treatment also made sure that the alignment of things inside her head developed correctly as well. At her final appointment, we received the best news about her head shape - it was within normal range. Then, at her 18 month check up with her pediatrician, her head size was finally about to hit the top of the normal growth curve. By the time she is two, she should be in the normal range on both size and shape for her head! Now that she is helmet-free, it is time for her to feel the wind in her beautiful hair!

Beads of Courage

Cupcake

For Emma's first birthday, I wanted to get her something special that she would have for the rest of her life. I didn't want something that she could wear and outgrow or even a stuffed animal that she would love until she outgrew that as well. I wanted something unique that would show her how proud of her I was, but also be special for her first birthday.

I had already decided on the theme of her birthday party - cupcake! I made several dozen cupcakes in normal and mini sizes for the guests. But the centerpiece was Emma's birthday cake - a massive cupcake that took over an hour to bake!

That cake could have fed more than twice the number of guests at her party.

 

The guest of honor in her ridiculous cupcake outfit that I couldn't resist.

 

She did not like the cake, but she was a good sport about trying it.

But even though I had her party all planned out, I still hadn't come up with that special gift. So I started looking through the Facebook page of Children's Medical Center for inspiration. And then I found just what I was looking for... Beads of Courage!

What are Beads of Courage?

Beads of Courage are ways for children to own their stories. Each bead that they have is related to a time that they had to summon up the courage to overcome a medical challenge they had to face. They are symbols of the stages in their lives that they faced and have been able to conquer.

Now I had a mission: to find a cupcake bead. I went to the Beads of Courage website and found they had an online gallery where you could purchase the beautiful beads. I began to look through the ornate, hand-made beads hoping that there was a cupcake out there. As luck would have it, there was one!!! It was listed at $15 with an option to have it turned into a pendant for an additional $6. I couldn't believe it!!! I had the perfect gift for my little cupcake.



Emma's first Bead of Courage.

This bead would represent the surgery she had when she was just two days old that saved her life. I ordered it on January 17th and couldn't wait to get it! Her birthday (February 7th) came and went with still no bead. I contacted them inquiring if they knew where the little cupcake was. In a crazy mix up, her bead accidentally shipped to the wrong address, but the recipient was kind enough to return it so it could be sent to me. After much anticipation, it arrived on March 15th. I didn't get to give it to her on her actual birthday, but I'm sure, in the years to come, she will enjoy the story of how her special bead had to travel great distances to get to her.

The next time Emma needs surgery for her shunt, she will be getting another bead from her Mama. I know it is not a matter of "if", but "when" she has to have another surgery because shunts have a extremely high failure rate - approximately 50% fail in two years. I am currently on the lookout for a blue elephant bead to buy and have on hand to give her after her next surgery. Her room is blue and full of elephants so I think that would be the next best bead for my little miracle.

What can you do?

The Beads of Courage is currently hosting their Inaugural National Bead Challenge Event on September 15th from 10am-4pm. There are eight participating studios in eight different cities. The company I work for has sponsored an hour of the event in honor of Emma. If you want to donate to the cause, you can find more information here.

I have not forgotten.

September 11, 2001

Eleven years ago today, I woke up in my college dorm room and began to get ready for class. Then, at 7:46 AM, the world stopped. Each year on this day, I remember that the freedom I have is not free and that others have fallen to ensure I can continue. I am grateful to those that have lost their lives and respect those that continue to fight. Now that I'm a parent, their efforts mean so much more to me.

Being the eternal optimist that I am, I tend to focus on the positive in most situations. Today, I focus on things that inspire me. A family member sent this story to me - it is a prime example of what I feel is important to think about today. This story is of a bald eagle that was injured by the hands of one person and healed by the hands of another. It is wonderful to see, on this day, the mascot of our country teaching us this important lesson: to rebuild, start by fixing things that others have broken, one piece at a time.

http://vimeo.com/15184546

Being a single Mom

In the beginning...

First, let me start by saying this wasn't my plan. I never thought I would ever get so close to what I always wanted, a family of my own, only to watch it fall apart before my very eyes. I got married on April 29, 2006 to the man I thought I would stand beside for the rest of my days. I fought infertility for almost three years before finding my first success with in vitro fertilization (IVF). I say "I fought", and not "we fought", because I felt truly alone in this battle. The man I married chastised me for worrying too much and for trying to go to a specialist to find out if anything was wrong.



Then, throughout my pregnancy with Emma, I was constantly trying to get my husband involved; telling him what was going on with Emma that week and what next milestone we had to look forward to next. I always thought I'd marry one of those guys that would caress my belly, feeling for the slightest movement from the miracle growing inside me. As it turned out, he never did - unless I asked him to. I even made him a PDF document with weekly updates of what was happening so he could read it on his iPad between the blogs that he followed. He never seemed to find the time; although he did manage to find time to keep up with his blogs. I was hurt that we weren't a priority, but I was afraid to speak up. I was always afraid to speak up to him - hard to believe for those that know me, I'm sure. But when we found out about Emma's medical condition he shut me out completely. He wouldn't openly talk to me about any of the risks Emma and I both faced, or about the fears that loomed over my every waking moment. The doctors painted a dire picture for Emma, and they pointed out that carrying her to term, if she made it that long, could jeopardize my chances to ever sustain another pregnancy - if I made it through it all. None of this concerned my husband.

When the going gets tough...

Then the unthinkable happened - he told me that he was thinking about leaving me. I figured it was just him struggling to accept what we had just learned about our daughter. For the next month and a half I walked on egg shells; trying to hold together the threads of a marriage that was unraveling before my eyes. I wanted to believe I was superglue and could hold together the family I thought I had. But to him, we were "not compatible." I couldn't understand how we could go from being compatible to being incompatible so suddenly.

On December 1st of 2010, he told me he wanted a divorce. My husband told me he was in love with someone else; someone younger who was already engaged to marry another man. He told me he wouldn't consider counseling, as he had tried to make our marriage work. I was shocked and amazed that I had found myself in a place of so little love and support, and worse, that I had been willing to accept it as though that was all I deserved.

He was right; we were not compatible, but looking back I don't think we ever really were. I loved my family, despite any of their faults, and wanted to share my life with them. He wasn't close to his, and made little effort to be until I began facilitating it. I wanted to travel and see the world. He didn't want to plan the trip, pack, fly, or leave the familiar behind - so I did all of it for him for the few trips we did take. I loved people and enjoyed spending time with friends. He said he didn't like people but admired my social skills, so I tried to help him make connections with others. I supported him when he went back to school full time, and in return I gained far less love and support than I gave. I was always trying to help him be happy and put my own happiness on the back burner - except when it came to having a child. I pushed to have kids, and he always told me he was on board. Now, I wonder if he wasn't ready.

The tough gets going...

It took me several months and some counseling to reach the point where I began to ask myself, "Why was I holding on so strongly to something that wasn't holding me back?" At one point, shortly after he told me he was leaving, he asked me why I wasn't yelling at him. He said he felt he deserved it and would understand if I did, but I simply said "I'm not mad, I'm disappointed. I shouldn't have to convince my husband to stay."

I was afraid of failure. Despite what he thought, I wasn't afraid of losing him or getting divorced. I was afraid of looking back and feeling I failed at something that I didn't try hard enough at. I was afraid of failing myself. He felt I was afraid of being a statistic, because most parents that go through what we went through don't come out on the other side smiling and happy to be together. If they remain together, it is a long hard road; mending things that were broken along the way. But both parents have to want to put in that effort. That's when I realized that I was the only one that would be willing to put that effort into our relationship. So I began to focus on my future relationship - the one that would be with me the rest of my life - the one that would mean more to me than any other - the relationship I would have with my daughter.

Christmas that year was hard, but luckily I have wonderful relatives that helped me focus on the baby that was constantly kicking me, as if to say, "I'm coming to see you just as soon as I'm strong enough." I had to focus on the great things to come, because I didn't have the luxury of grieving the loss of the family I thought I would have. I was on full bed rest with a high risk pregnancy, and to keep Emma safe I had to shelve my need to grieve until a later date. I did that for eight long and painful weeks. I was having painful contractions and dependent on my husband to come by and take care of my three dogs. I didn't want to see him, but I was afraid if I didn't allow him to help that he wouldn't stick around for our daughter. I didn't want to be the reason he wasn't there for her.

And this mom is tough and will keep going...

After Emma was born, I went to the NICU to see her every day from around eight or nine in the morning until five or six in the evening. I hated leaving her, but I still had three dogs at home that needed to be cared for as well. It was extremely rare for her father to spend time with her if I was there. He would see her only in the evenings for a couple hours on the nights he did visit. On occasion, he gave me a ride to the hospital on the weekend, but didn't even come up to see her. Once she came home, it was 5 days before he came to visit Emma. He came by for other reasons but wouldn't spend time with her. I even invited him to stay and care for her overnight. It wasn't until he had a lawyer for our divorce that he started visiting on a regular basis and took me up on the offer.

During the divorce, I kept trying to make sure Emma's father would be involved with her care by attending her doctors' appointments and therapy sessions. My lawyer told me I couldn't force him to be a responsible father or even a good one, and he was right - her father still makes little effort to attend appointments or therapies. All I could do was focus on making sure I was a responsible parent.

After almost seventeen months, my divorce finalized in court. Two months later, he signed the decree. I continue to focus my attention on Emma, but now I can live my life again as well. I won't allow myself to keep quiet because I want to be heard. I want to be loved and respected; admired and adored; supported and challenged. And this time, I won't settle.

Gallery of Hope

Medical City Children's Hospital
Emma's first home

Emma was born at Medical City Children's Hospital in Dallas. On May 19th, we attended the first neonatal intensive care unit (NICU) Reunion since she was born. The reunion is held every year as an opportunity for children that have spent time in the NICU to come back and see the people that helped them at the beginning of their journeys and show them the progress they have made. There are activities of all kinds addressing all levels of abilities so that every child can enjoy themselves at the reunion. It was uplifting ad inspiring to see other children working to overcome their challenges with their supportive parents encouraging them every step of the way. Knowing you're not alone is a concept that is hard to grasp, but seeing you're not alone is tangible and means so much more. While we were there, I saw someone that had been instrumental to me during the weeks leading up to Emma's birth. As the Fetal Programs Manager, she coordinated my care and the care of Emma from the day she was born. She was responsible for making sure all the correct doctors for both of us were present and accounted for on the big day. She also had a contingency plan worked out to coordinate the transfer for both of us should anything happen that would inhibit our ability to make it there on our own. Inspired by her personal strength, I believed I could walk down the path before me under my own power if I could just open my eyes and see the strength the journey would require within.

Strength is sometimes an elusive characteristic. Until tested, a person may not fully be aware of the strength they possess; as was the case when I finally realized I was going to be a single mother to a beautiful baby girl who would need my strength more than most daughters need the strength of their mother. She was going to need me to fight for her when she needed me to, but also have the restraint to let her fight for herself when she needed to. Emma would need me to ask the tough questions of the nurses, doctors, and surgeons that were working together to give her the best chance at attaining her future goals, and to make sure that there weren't any other opportunities left overlooked. She was going to need me far more than any other person I knew, or would ever know, for the rest of my life. The truth is though, I would end up needing her far more than she would need me.

I must, in good conscious, admit this experience is not just for my daughter. I thrive when I can see a person's demeanor change for the better; knowing I helped them see something good in themselves they may not have found on their own. I feel best about myself when I am helping others. It is one of my characteristics that shines bright enough that it can't be concealed - not that I would want to, as it is a great part of why I am proud of who I am. However, being selfless can be a character flaw if you don't stand up for yourself - and that has always been my challenge. After having Emma, my personal experiences gave me a new sense of strength and raised the bar for how I would allow myself to be treated. In the past, I was willing to accept less; hoping that people would change and see the error of their ways. That mentality allowed me to believe that less and less was still enough, and over time my bright personality, which had always made me so proud, began to lose its luster. I had lowered my standards without even noticing and had no one to blame but myself. When I started the transition into parenthood and my maternal instincts kicked in (I should say kicked in more as I've always been very maternal), I realized that while I was correct in expecting so much for my daughter, I needed to reevaluate what my expectations were for myself. When you expect more and hold yourself and others to higher standards, the people worth your time will rise to meet them.

Sticker from her 18 month check-up

Emma is now 18 months old and she has shown me more strength than I have seen any other person possess before years of experiences challenged them, hurt them, stretched them, and molded them into an adult capable of being self-sufficient. I consider the people I am comparing her to my peers, and they are people I look up to and respect. Emma may not be my peer, but at only 32.25 inches tall, I still look up to her. The strength she has shown is something I feel others could see and admire if only given the chance. So when I was asked at the NICU reunion if I'd be willing to have Emma's story on their website, I saw it as the perfect opportunity to start helping others as well as help ourselves. The Fetal Programs Manager wanted me to not only tell Emma's story, but also explain why we chose Medical City and what our experience was like. She wanted other parents, who were struggling to see that they weren't alone, to hear stories like Emma's; a story that could encourage them to believe that more is possible than they might imagine.

I believe the first entry of this blog gives a good synopsis of Emma's story. As for why I chose Medical City, the answer is simple: I chose Medical City based on the advice of Emma's neurosurgeon. During our consultation on November 12th of 2010, he stated that, of the two hospitals that he could perform Emma's surgery, he recommended going to Medical City for a planned C-section. After hearing this, I called to schedule a tour of the hospital to see for myself the capabilities of the facility for both Emma and I. On December 30th of 2010, my step-mom took me in for a visit (since I was on full bed rest) and I was shown around in a wheel chair so we could see as much as possible without any additional risk to Emma or myself. While giving me a tour of Medical City, the Fetal Programs Manager was very informative, but more importantly she was calming and reassuring. I felt at ease and comfortable placing our lives in the hands of those employed at Medical City Children's Hospital. Next, it was time to meet the doctor that would be performing my C-section. On January 10th of 2011, when I was 34 weeks pregnant, I had my first consultation with the man that would eventually deliver Emma. The man's skills spoke for themselves; his practice handles all of the high risk cases for Medical City Children's Hospital, including conjoined twins, babies with heart abnormalities, and those born with hydrocephalus. He had more experience delivering babies like Emma than any other Ob-Gyn that I had seen or spoken to. He displayed many traits that were reassuring to me, but the one that stood out above all the rest was his sense of humor - it was slightly off kilter and right up my alley. My step-mom and I instantly felt a level of comfort with him that gave us both the confidence to trust him to do what was needed on the big day. I knew he would give Emma and me the best chance at a life together.

On the day Emma was born, I went in knowing my doctor would perform a trans-abdominal Caesarian surgery that would leave an elongated scar due to the size of my daughter's enlarged head. What none of us knew, prior to that day, was how much more slicing and dicing would be required to get Emma out. They made the trans-abdominal incision on my uterus, but she wasn't ready to venture out into the world - so they made it wider, and she still resisted. Then the surgeon made both the trans-abdominal and classic incisions on my uterus to make the opening larger still... but she wouldn't budge. Finally, the scalpel cut through all the fascia of my abdominal cavity and the nurses pulled the muscles back like drapes. When Emma still wouldn't come out, they had to resort to plain-old elbow grease. The anesthesiologist eventually had to press down on my chest in a desperate attempt to encourage her to come out; it was one of the most scary and painful moments in my life. It took nine minutes in all, but as soon as she was out, I felt immediate relief from the pressure on my lungs which allowed me to breathe deeper than I had in months. Still trying to catch my breath, I remember asking my sister if Emma was alright. She assured me that Emma was fine. My sister took my camera and snapped a couple pictures of the nurses cleaning up Emma. I got to see my daughter's face for only a moment before the nurses took her off to the NICU, but just that moment gave me instant relief. I knew Emma was alright and in the best hands possible. Once they had me stapled up (22 staples - one for every inch of her birth length) and in my room, waters began to get rougher for me. I experienced some complications due to the extra cutting required to get Emma out, although I don't remember much of the first day and a half after the surgery - other than the constant pain. I do know I was wheeled up to the NICU and got to hold Emma because there are pictures of me holding her for the first time, but sadly I have no memory of the experience. At some point on the second day, my nurse, who had been taking care of me during the daytime shift, was talking to other nurses and doctors about my condition because she feared something was wrong. She was an amazing advocate for me, and inevitably got the attention of a doctor who concluded that I desperately needed more blood. I was given two full units of blood while they waited to see if that would be enough for my body to take over again. Luckily, I didn't need any more than that. After the first unit was in, I felt functional again, and after the second, I felt some of my strength return. I am eternally grateful to all the kind nurses and doctors that took care of me; they helped me at a time that I couldn't help myself. The fact that their attentiveness and diligence saved my life is just one more reason I'm grateful I decided to have Emma at Medical City Children's Hospital.

I was finally released to go home after a long week, but I wouldn't be allowed to drive for several more weeks, as the pain medication I was on was too strong to operate heavy machinery. I now had to depend on others to take me to and from the hospital everyday so I could see Emma and bring her breast milk. Luckily Emma and I have a wonderful family and amazing friends that were happy to help. Not only would they take turns giving me rides, but they also coordinated those rides amongst themselves and emailed me the list so I'd know who was going to be coming each day and when. It was incredibly hard to leave Emma at the hospital each night to go home, but I had to remind myself that she was in the best of care and needed time in the NICU to get stronger. I knew she would come home with me; I just had to be patient and let her get there on her own time.

In the meantime, I would spend my days at the NICU holding her, singing to her, and telling her stories. I watched her nurses and OTs closely and asked many questions so that I could learn from the best how to care for my little bundle of joy. Eventually, I was given the opportunity to take over her primary care while I was at the hospital so I could gain valuable experience under the nurses' guidance. Learning how to help Emma drink from a bottle was the only part that made me nervous. I could see how hard she was working to learn how to drink with her OTs, and I wanted to do everything I could to help her continue improving. In the beginning, she was working once a day to consume only a few cubic centimeters of thickened breast milk from a bottle. She had to have a combination of chin and cheek support to help teach her how to manipulate her mouth and suck on the nipple correctly. Emma also needed help understanding she needed to keep sucking. She had to be given stimulation from the nipple of the bottle on her tongue and roof of her mouth to remind her to keep her sucking. Over time, she began drinking small amounts of each of her eight daily meals by bottle. Whatever she could not finish by bottle was fed to her through the tube that went in through her nose and down into her stomach. On March 4th of 2011, I was told she would be able to go home the next day if she could handle all of her meals by bottle over the next twenty-four hours. I was given the opportunity to spend the entire night with her in the NICU so I could take on all of her responsibilities and see how we did as a team. It was one of the best nights of my life because I was there to watch her achieve a new milestone for the first time - no feeding tube for 24 hours. The next day, she had one last challenge to pass - her car seat test. She did that one easily and even slept through most of it. All of Emma's hard work paid off and she was finally able to come home with me. The day Emma came home revealed the main reason I'm grateful that she was born at Medical City Children's Hospital. During her month stay in the NICU, I saw many babies struggle to survive and some parents simply lost in fear as to what they could do to help their fragile children. Through it all, the nurses and OTs were always available and supportive. They encouraged the parents to be involved as much as possible while maintaining the safety of their children. Most importantly, they helped Emma and me get to a point that we could handle things on our own; having her home with me was, by far, the biggest accomplishment I had experienced to date.

On the day of the photo shoot for the Gallery of Hope, I became excited as I thought about the opportunity to share my experience with Emma. I knew that we would be sharing her story with others that might find hope in their own lives after hearing how well she is doing and how far she has come. What I didn't know, however, was just how many people would see and hear her story. I thought the Gallery of Hope was something done by the hospital for their facility alone. I later learned, from the photographer, that it was so much more. She told me that the best pictures taken that day would be put on a canvas with Emma's story written and displayed on an easel in Children's Hospitals all across Texas. The gallery would travel from hospital to hospital, and even spend some time in the state Capitol. It was scary for me to think about how much more publicity Emma and I would receive from this, because being candid about this much of my personal life is far, far outside of my comfort zone.

I only recently started this blog after reading the blog of another mother, whose story about her son I found so inspiring. I figured if her story could move me the way it did, then maybe Emma's story could help inspire someone else. I took an enormous personal-step forward by starting this, and thought I was taking a smaller second step by being involved with the Gallery of Hope. It turned out that the second step is much larger than the first, but it will also be a way for Emma's story to have a direct impact on those that can relate the most to both her struggles and mine. I also told the photographer that she could refer to this blog to help tell Emma's story - something I would normally be hesitant about. So instead of taking two steps forward followed by one step back, I have made three large steps in a positive direction for myself. I believe the portraits will be unveiled on October 25th, at an invitation-only event, but as soon as I get word as to when her portrait will be on display at Medical City Children's Hospital, I will announce it here.

Hawaii

~*~*~*~ KONA ~*~*~*~

My favorite sunset picture I took on the entire trip.

Day one: Will there be snakes on the plane? (7/22)

The day started with my favorite Starbucks breakfast; followed by double, and then triple checking, the bags I packed to make sure I wouldn't forget anything... and yet despite my efforts, I ALWAYS forget something. It's fun to discover what I forget each time I travel, because sometimes it's insignificant and others it's detrimental. Luckily it was only my headphones this time - something that is easy to replace when you're going to an airport. I had a suitcase for me, a bigger one for Emma, my roller carry on with all my travel documents and electronics, Emma's diaper bag, and a purse. Add to that a stroller, her Childrite seat, and of course Emma. Having only two hands just seems humorous when looking at all of the things needed for our week-long family vacation. Traveling with children is work because you leave all of the accoutrements at home that make your life easier (like the crib, changing table, bath chair, etc.).

Luckily for me, I had a spare set of hands to help. My family paid to have a nanny for the trip to help me out with Emma, and also to help my sister and her husband with their daughter who is four months older than Emma. This nanny has helped me with Emma before, and loves her dearly, so her kind spirit was a welcome relief after seeing the massive amount of stuff we would be traveling with.

We arrived at the airport and went to the security line after checking our bags and getting our tickets - FIRST CLASS!!! This was the nanny's first flight, and my first time to travel with Emma, so it was a little rough. We had four bins, two bags, the chair, and stroller to put through the x-ray machine. Once we were done and at the terminal, I went to buy some headphones for myself and bottled water for feeding Emma on the plane. Next, we boarded the plane. My sister and her family were a couple rows in front, and my uncle was seated next to us (Emma shared my seat). The first flight was about eight hours long, and would prove to be a true testament of Emma's calm and happy personality.

While getting ready for take off, Emma had to do a full inspection of everything.

Once we were situated in our seat, Emma had some baby food. Then, she drank a bottle of formula during take-off to (hopefully) help pop her ears and equalize the pressure. The new noises of the plane were a little startling to her, but she was happy to continue drinking her bottle. Fast forward eight hours, three diaper changes in a tiny airplane bathroom, a two hour nap for Emma, and lots of talking - and we touched down in Honolulu. I must say that Emma did beautifully on the flight. I was so proud of her, and also relieved, as was my uncle sitting next to us for those eight hours.

Next, we were on to a short flight from O'ahu to our final destination on Hawai'i. After the second flight, we loaded up the rental car with all Emma's gear and made our way to the room where we were staying so she could eat and be put down for the night. It was a long day for such a little baby, but we followed the advice of her pediatrician so that she'd adjust to the five-hour time change as quickly as possible. I'm looking forward to letting her sleep on the flight back; it will be so much easier than keeping her entertained and awake for over thirteen hours of travel, six of which were after her normal bedtime. I'm so lucky she is always so sweet and happy!

Day two: Just keep swimming! (7/23)

I woke up around 6:30 AM local time and Emma was still asleep next to me. The little wiggle-bug woke me up a couple times during the night, but she did so well adjusting to the five-hour time difference that I was happy to wake up each time to see she was still sleeping. I got up and went out to see the view from my room for the first time, since it was pitch dark when we arrived. Absolutely beautiful! After taking a few pictures, I heard a happy, talking baby start to stir. After we both had breakfast, it was time to unpack and get cleaned up for the day. Once Emma had her cereal it was time to stock up on food. Emma's nanny, Emma, and I loaded up and went to the little grocery store. We only bought breakfast and lunch items for the week since I knew, for the most part, dinner would be spent as a family each night.

Once back, it was lunch time. My sister's husband woke up early and was not feeling well, so he was napping while the girls got together and I made macaroni and cheese. It was nice to get the cousins together and see them talk to each other. Emma will happily say her name any time you try to get her to say any word. Her cousin recently learned how to say "Emma" as well, so it was cute to hear them both saying it back and forth.

After lunch had settled, it was time to feel the sand between our toes! My sister and her family joined us at the beach and we got the girls wet. They both seemed to enjoy the water hitting their feet as they sat on the edge of the wet sand. We didn't stay long because Emma had yet to take a nap and she was about to crash (and did so in my arms while walking back to the car). Back to the room and a quick rinse-off for everyone to get the sand out of...all the usual places. After the bath, Emma wasn't tired so we played with the toys I brought for her. After snack time we relaxed on the patio; enjoying our front row seats to the view and sounds of the ocean.

My little beach baby playing with the waves.

Dinner time was at 6:00 PM at the pavilion next to my grandparent's room. My dad grilled steaks, potatoes, and asparagus. After the delicious meal, I snapped a couple quick pictures of the sunset before feeding Emma her dinner. She was so tired she fell asleep during her bottle of milk after the cereal. We wished everyone else a good night, came back to the room where I put Emma down to sleep, and then went to bed myself - she wasn't the only person that wanted to crash.

Day three: Ice cream Kona. (7/24)

Four AM came way too quickly for me, but not for Emma. She was happy to be awake and wanted to tell me all about it. After changing her diaper and removing her helmet to check her shunt, I grabbed her morning bottle and a box of cereal, and took them back to bed. We had breakfast in bed and snuggled as she told me stories about her Hawaiian adventures. After a long, slow morning, we got ready to go to Kona with the family. This meant more stroller time for Emma - something she is still adjusting to. She has never been a fan of riding in any stroller, especially if the ride gets bumpy. She would go into "mermaid" pose immediately when the captain would illuminate the "Fasten Seat Belt" sign. Her "mermaid" pose is when she crosses her legs and locks them stiff, straightens her arms out and locks them too, and tilts her head slightly as she strains - turning her face red. This is how she expresses she is uncomfortable or unhappy for any reason (wet diaper, hungry, hot, uncomfortable, etc.).

We left for Kona around 10:15 AM; right after Emma finished her cereal and milk. We were planning on eating lunch in town at the Kona Inn Restaurant in the local shops. Emma did very well in her stroller, but did get a little warm a couple of times, so I got her out and carried her. Seeing my uncle push her stroller was priceless, but I must admit I was grateful. After lunch with the family, it was almost time to head back to the room, but we had to make a quick stop to get a henna tattoo before leaving: Dumbo on the back of my left shoulder - I'm a huge Disney fan that loves elephants. In fact, Emma's room is blue and full of elephants of all colors and sizes.

Once back, there was a short nap followed by snack time. Then, it was time for Emma and her cousin to have their first play date without any stinking parents. My sister and I joined the rest of the adults in the family for dinner, while the girls stayed behind to play with Emma's nanny. After a long dinner, I was back with my baby girl - snuggled up in bed for the night.

After playing hard while the parents were away, the cousins were exhausted.

Day four: Spinner dolphins in calm waters. (7/25)

Emma enjoying her morning nap.

Watching the dolphins on the patio and talking about the ocean.

Today was a day to relax, listen to the ocean, watch the beauty around us, and just be a sponge. We enjoyed some French toast with my sister and her family, after which Emma and I watched spinner dolphins for almost an hour. We played and worked on her therapy a bit more intensely then we had the other days, as I had backed off a little since we had so much to adjust to with traveling. She worked really hard and made her mommy proud. The rest of the day was Emma and Mommy time that I needed.

Day five: Laughter is the BEST medicine! (7/26)

This morning, after her bottle, Emma had the bath we didn't do the night before. While I was rubbing lotion all over her, as I do after every bath, she did something she had never done before - she laughed! After my cheeks were as wet as she was, I went to grab my phone to record the beautiful sound that was filling me with tears of joy. I'm happy to say I have about a two-minute audio recording of her laughter that I've sent to many friends and family. It's been great to share this little accomplishment of hers that still doesn't seem so little to me (and probably never will).

Every time I see Emma accomplish something new, no matter what it is, it means so much to me. Admittedly, I'm a sappy person. I cry over those awful anti-animal-abuse commercials on a regular basis, but I'm rarely moved enough to have happy tears. Before Emma, I could count on one hand (with fingers to spare) how many times I've shed happy tears in my life. Since Emma, that number has grown exponentially. She inspires me to strive for more, and to not accept less from myself and others when it comes to caring for her. The pride I have in seeing her develop and continue to grow is just something I don't feel words can do justice. I'm sure every mother feels that way about their pride and joy; I just can't imagine my life before her being as satisfying as I thought it was. I thought I was happy and that the life I had was enough, but she has shown me a love that knows no bounds - one I will strive to attain with those that matter most in my life. She has opened my eyes and shown me I am a better person than I would otherwise give myself credit for. I am proud of who I am, and I want to inspire her to be the best person she can be, if only so that she can experience the pride I feel for her.

Day six: Waterfalls by helicopter. (7/27)

This morning, Emma woke me up with the sweet sound of her laughing. I reached over to snuggle with her in her little fort (I took all the decorative pillows and placed them under the sheets all around the edge of the bed, other than where I'd sleep, so she'd have plenty of wiggle room) only to find a wet baby and bed. She had tricked me... why does she have to be so stinking cute?

After she had her bath, I had a shower, and the bed had new linens, it was time to actually snuggle. Once it was time to play, I went to get her dressed for the day. My grandmother had bought Emma a dress specifically for this trip and I thought today would be a good day for it. I always tell everyone to be mindful picking clothes out for her - she needs elastic neck lines or ones that have buttons or snaps so that they can fit over her head. Well, this dress had a single button and extended a little wider when undone, but it still wasn't enough to accommodate her head. Tried to put it on from the bottom and it was too small for her chest. I felt bad cutting such a pretty dress, but I'd have to if she was going to wear it. I ended up cutting a one-inch slit where the button was, making that hole bigger, and was then able to get it over her head. I must say, it does look really cute.

Next, we enjoyed some sitting and playing with her toys on the patio (which is my sneaky way to do her therapy work with her) until it was cereal time. Now that she seemed to be adjusted to the time change, I added graham cracker crumbles back in to her cereal. We are still working on textures and chewing up more solid foods. She still isn't a fan, but she's doing so much better these days and she ate all of her cereal - even with the crumbs.

Then it was time to visit with some family (including the grandma that bought her the adorable dress - which worked out nicely). Once my belly told me it was lunch time, we came back to our room so I could eat and then feed Emma. After lunch, the cousins got to nap together with the nanny while the adults went on a helicopter tour of the waterfalls of Kona courtesy of my wonderful grandfather. It was absolutely breath taking. After we landed, my dad and stepmom bought the girls little teddy bear pilots as souvenirs. I love my family!

Day seven: Shopping with the girls. (7/28)

My sister, her daughter, the nanny, Emma, and I had an afternoon of shopping for souvenirs to bring home for friends and family. It was mostly just time with the girls to me. I love my sister and niece, and love seeing how my sister responds to her daughter. She has a softer side that few see so it's nice to see the comfort she gives her daughter and the level of patience she has with her every day.

However, it is still hard at times to see the differences between my niece and my daughter. For example, today at lunch my niece was in a high chair provided by the restaurant, and she ate chicken from the kid's menu off a normal fork; both without any trouble. She also enjoyed coloring her children's menu, sharing her crayons with her mom when asked for one by color, then putting her crayons back in the box when she was done. Emma, who is still working on sitting, was in my lap when it was time for her to eat and the nanny was feeding her a jar of stage three baby food. Emma was not in the best mood and was struggling with the basic skills that my niece had done without any focus on her food.

I can't help but wish I could do something more to ease some of Emma's challenges, but I know that I'm doing everything I possibly can to help her. I just have to be patient and be ready for her to make the steps on her own time, just like laughing; something I've been wanting for well over a year, and finally have the joy of hearing her express herself. I can't wait for her to make eye contact with me, extend her arms out for me to pick her up, and perhaps even say "mama up". I know we will get there, and every moment she learns something new will be special, but it's hard at times to keep my optimism in check.

Nap time after a day of fun with the girls in Kona.

Day eight: You can pick your boogers, but you can't pick your family. (7/29)

Waking up to Emma in the morning is always fun...

I'm happy to say, that despite all the unique idiosyncrasies my family has that make me want to pull my hair out at times, I wouldn't trade them for anything. My family really is a family. Through thick and thin, I know I can always count on them to be there if I ever needed anything. And even when I don't need it, they come through by giving me the opportunity to take some time with my daughter on a beautiful vacation to really enjoy being a mom. It's really easy to lose some of that focus during the every day grind of working five days a week. I could have just as easily been working this week and missed my daughter's first laugh. I still would have been proud and excited, but I also would have been upset to have missed it.

I must say I'm so grateful Emma and I had this chance to come to Hawaii. It has reminded me how much I enjoy exploring and seeing different places. I need to make it a priority to do a trip with Emma at least once a year - even if it's just a little getaway close to home. I love my memories of the experiences I've had traveling growing up, and I want her to have those same kinds of memories.

Emma and I spent most of the afternoon with my grandparents (who's 50th wedding anniversary was the reason the family went on the big vacation to celebrate) watching how they function as a couple. For both of them, this is their second marriage, and it gives me hope that I can do better the second time around. Time to go make more memories! Then it's back on a plane to begin our journey home.

Day nine: Snuggle time. (7/30)

At the end of the first flight getting ready to land, someone finally woke up.

The flight started 10 PM Hawaii time, and after a layover in LA, we arrived at home just after lunchtime. It sure didn't feel like lunchtime to me, as I was awake and busy being Emma's pillow on both plane rides while my little cupcake slept. I find myself doing everything in my power to get Emma to laugh because it is the sweetest sound I've heard in a long time. Thankfully, she happily obliges me most of the time and I always get chills. I love being Emma's mom!