HELLO!

I promise there will be more posts to come. I haven't had a computer but will be getting my new one very soon. Thanks for checking in!!!

~Becky

Reflections

Fact: My daughter is the most beautiful child in the world.

Fact: To every parent, their child is the most beautiful child in the world.

I see my daughter through my kaleidoscope eyes as a child who is exquisite. Logically, I know I am not the first parent to think this, we all do about our children. But, I also believe that we all secretly think that our child really is the most magnificent child to walk the planet. And that is fine, because no two people see through the same eyes.

I don't want this to be misconstrued but I have a love-hate relationship with mirrors. If one is there I always look in it, way too often, I can't help myself. BUT, I am not looking at my reflection so often because I like what I see, it is more the reverse. I have always been self-conscious and uncomfortable in my own skin. It really has only been recently that I am growing into myself. It is a journey. I do not feel insignificant anymore. As I grow older I can now understand and appreciate myself (Hello 30!).

Now, here is my enigma. How to teach Isla to see herself through my evolved eyes. I need her to see herself how I see her. How do you teach that? I insist that she knows that every single perfect imperfection is just as it is meant to be. How do I teach her that she is beautiful? And I how do I teach her to recognize that beauty comes in all forms. How can you possibly teach confidence, happiness and contentment...

Now, let me tell you a story. Nate and I sat in the doctor's office. "Any questions?" asked the cranial-facial specialist/brain surgeon/genius. "Umm, yes", I replied. I hadn't asked anyone this question yet because it was just too scary for me to do so. I summoned all courage to my lips and began to speak. I explained that when I look at Isla in the mirror she looks different. Her face looks radically asymmetrical, her misshapen features a hundred times more pronounced. She looks like a different child to me when I see her reflection. So, I braced myself and asked the question that I needed to ask. "Do other people see her the way I see her or do they see her the way I see her in the mirror?"

The doctor proceeded to tell me that because I am her mother my brain is filtering what I see. Other people see her as I see her in the mirror.

I cried.

I was seeing her again for the first time, my heart broke. For two days I could not trust my own mind. Why would my brain lie to me only to show me the truth in the mirror. If my brain truly was filtering the severity of her perfect imperfections wouldn't it do so across all settings? It didn't make sense to me...so I researched.

I found only a couple of websites but they were there. One explained that the reverse image in the mirror will make a child who has hemifacial microsomia look more asymmetrical because the mirror is a 2 dimensional surface, rather than the 3 dimensional view our brains are accustomed to.

I cried again.

That doctor was wrong! Everyone sees her as I do! Well, not exactly as I do, obviously I see her as the most beautiful child to ever walk the planet!

I found a second website where a mom worried about the same issue but brought a new perspective. If that is how she appears in the mirror, is that how she will always see herself?

AGH!

I reflect on my own past insecurities and cringe. I want to teach her all the things that took me so long to learn. I want to be a good mom.

I guess all women will have their own battles with their reflection. I desperately pray that Isla's journey does not have to be more burdensome than the average struggle.

I don't know the answers to all my questions and I don't know how exactly I will answer hers. Some people don't see the extreme difference in her in the mirror that I do, that frustrates me and at the same time gives me hope.

Life is fascinating because no two people see through the same eyes.

Each reflection is an individual and exceptional stained glass window.

All the colorful pieces fit together just as they were always meant to.

Insomnia

I can't sleep. I give up. There are approximately 1,000 conversations occurring simultaneously inside my head, because of this I lie awake. Maybe writing will help alleviate the chaos inside. Not every conversation is about Isla but I optimistically hope that while I clarify my thoughts specific to her the other deliberations will sedate.

I have not written in a while, see, things have been hectic with the holidays...as always.

I believe that Isla had a wonderful first Christmas, her enchanted face told me so. Santa was good to her this year. Isla, Nate and I had a peaceful, quiet morning alone and that was by far the best part of my holiday. To add to the brilliance of the day, Isla began to crawl on Christmas morning...well it's not exactly crawling...it's "combat " crawling but who cares! It was a huge step for her and Nate and I both stared in disbelief from opposite sides of the room. She is a hurried little thing when she gets to it. She has a purpose, a one track mind and she is goes for it. Don't lose that Isla!

Since then she has only gotten better. She had her Occupational Therapist come from Early Intervention today and she was so impressed with Isla's progress from just 2 weeks prior. She showed us more strategies for helping Isla in areas she is lacking. Isla worked so hard throughout the entire hour that we were all so proud and impressed that she tolerated it as she did. She did cry in protest at times and needed a hug from mommy but got right back to it.

Nothing more has developed on the other side of things; her vertebrae, hearing, eyesight, etc... This is particularly annoying to me, although I need a stronger, more fitting word than annoying. Any ideas?

Dealing with this hospital has been a struggle from the beginning. We have felt that if we want any forward progress at all than we are the ones who need to facilitate it. Now, do not misunderstand, I realize that Nate and I are Isla's strongest advocates. This is something I do not have a problem with and accept the position proudly...but shouldn't the doctors communicate with each other? If one doctor tells us out next step is to get X tested shouldn't someone set that up for us...or at the very least point us in the right direction? Usually we never hear another word about it until we call, a little follow up would be appreciated!

I should point out that the cranial facial team has been easy to work with. Within that department we have a coordinator who makes the appointments for us and sends us confirmations, reminders etc., an she is always available to take our questions. The doctors within that department communicate and set us up with the next appointments needed. I guess that is why I am frustrated, I can see how smoothly the process can happen.

Why is it that the entire hospital is not run this way? I have spoken to other parents who have said that their experience has been very similar. This disgusts me. We are parents of children who have special needs. We are giving all we can to our children and our focus should be on them, NOT on making sure that the doctors are doing their jobs.

I apologize because this has turned into a rant, but in my defense I did preface with a warning that I was clearing out the chaos in my mind.

Long story short. I will be calling Children's Hospital Boston this week to see if there is any way we can take Isla there. I would like to see if the level of care is superior, which I am optimistic that it is and in the very least I think a second opinion would be best in all areas.

More doctor's appointments are the last thing we need in our lives right now but as I have said before, I will do anything for Isla and I need to know she is getting the best care possible.

Merry Christmas and Happy New Year to everyone who has come to read Isla's story. I have high hopes for 2010. I think it's gonna be a good one!

I think I can, I think I can...

This helmet business is not easy. Every time I have to put it on her head my heart breaks just a little more. Last week as I was getting ready to bring her to daycare she would not stop crying. My instincts told me it was the helmet but I thought, "Possibly it is the cold that she has or because she is teething" so I left it on. As I dropped her off, I made her daycare provider promise to take it off if she looked pained or even just uncomfortable. About 2 hours later she did call saying Isla had not been herself all morning, she was crying inconsolably and she had taken the helmet off. We called the doctor and he told us we should keep it off for the weekend (I enjoyed every moment of my helmet free baby love) until we met with him on Monday.

At the appointment on Monday, he re-adjusted the helmet and agreed that is was too tight in a few places and rubbing on her head much more than it should be. Off we went... determined to begin again with a newborn positivity.

Ugh... and now her head is becoming irritated again, ensuring that we will be making yet another trip to the helmet man in the very near future. I will continue to make trips until I am positive that Isla is not the least bit uncomfortable while wearing her helmet. I could not be more frustrated with the entire process. We have to fight to make this helmet work for our daughter, we have to fight to to get something that we hate.

However, we do know that this hurts us more than it hurts her and we will do whatever we can for her no matter how hard it is.

Cleft Lip Repair

Five days after Isla's birth we attended our first cranio-facial clinic where we met with her case manger, plastic surgeon, otolaryngologist (ear, nose, throat specialist) genetic counselor and speech and feeding specialist.

The team was assembled for us and they were ready to treat all aspects of Isla's birth defects. We weren't told much about what to expect so arriving at the clinic was honestly a bit of a shock to our systems. We had gotten about 2 hours of sleep the previous night as it was our first night at home with Isla and we were told to be at the hospital for 7am. We stood against the wall in the waiting room because all the seats were taken by parents accompanied by their beloved children. All of the children had cranio-facial abnormalities ranging from mild to severe. We must have been a sight, both standing there absolutely exhausted, holding our tiny 5.5 lb baby shocked that we were members of this new world.

Nate has one particular memory of a father bouncing his child on his knee, both child and baby were laughing and smiling. The child had a very sever facial defect but the father still poured blind love over his perfect child.

Three months later Isla had her cleft lip repair. She finally weighed 10 lbs and was approximately 3 months old, both prerequisites to undergo this surgery. The surgery took over 3 hours and we waited impatiently for the doctor to come through the doors. Although the surgery is considered "minor" it was quite the opposite to Nathan and I. Isla has been put under with anesthesia twice now and it is never easy because there is always a risk.

Once, the surgeon gave us the okay to see Isla I ran towards her cries, I think I left poor Nate behind to carry everything. I held her and I rocked with her and I cried. I was so afraid that her face would look different to me. I fell in love with the face that she was born with and it was perfect to me just as the man in the waiting room saw his child as perfect. Nate and I both agreed that having the cleft lip repair was the right thing to do for Isla but would have kept her face just the way it was if it wasn't for the health benefits and social acceptance.

At first she looked different to me and that made me cry but as she began to open her eyes I saw that it was still my baby and cried more. As each day passed the swelling went down and emerged was the face that I had loved all along.

Isla was extremely lucky to be born in the United States. Children born with cleft lips and palates in numerous other countries are not so lucky. Many children are shamed for having these defects and are forced to live in hiding. Today there are many non-profit organizations that visit these countries and perform these surgeries for free. They also train local doctors and nurses to perform these surgeries themselves after the organizations have moved on.I listed just a couple of links below for information about cleft lips and palates and the organizations that help the children born with wide smiles around the world.

www.operationsmile.org

www.smiletrain.org

http://www.marchofdimes.com/professionals/14332_1210.asp

Rockin the helmet

Isla will be on her 7th day of her helmet introduction tomorrow which means she will begin wearing it for 23 hours a day from this point on. She has napped while wearing it and tonight will be her first night sleeping with it on. Overall she is doing very well with it and while she seems to notice it she does not seem to be bothered by it.

Daddy and I are the ones having a hard time but we try to reassure each other and stay positive. I know that a month from now we will all be so used to it that it won't even be a second thought.

On the bright side, she looks adorable!

A mother's instinct...

I am a little neurotic at times, I admit, but aren't we all? I have had many irrational fears in my lifetime and pregnancy was like a moth to a flame. One irrational fear (or so I was told) that I had was cleft lips and palates. I have no idea why and I am not making this up! I have witnesses!

I couldn't shake the fear of a cleft lip. My friends thought I was crazy. It is not that I particularly thought that my baby would have a cleft lip, I was just afraid of them, if that makes any sense. I would see those commercials and just feel so sad for those children.

Skip ahead to the "big" ultrasound...It's a girl!!! We were so excited and hearing those words made it so real!

As the ultrasound technician was doing her thing and checking that the baby bean had all her parts I asked randomly "Can you see a cleft lip or palate at this stage?" Again, I didn't think she would have one, I was really just curious more than anything else. "Why?" she asked "Does it run in your family?" "Nope, just wondering." I replied.

Funny, I had asked. She assured me that she didn't see anything out of the ordinary but our stubborn daughter would not move her hands away from her face, therefor the tech could not get a good look and could not check off on her list that all parts of the anatomy were accounted for.

After a very long 2 weeks I was back in the chair, mostly just excited to get a whole new strip of ultrasound pictures and still a bit anxious even though she assured me that she saw nothing out of the ordinary. She rechecked the tiny body in my belly and declared her perfect. No cleft lip or palate she assured me.

I didn't give it another thought until the words were spoken in the operating room.

Isla was born with a unilateral cleft lip and a cleft palate.