Liam's first word

We went to Aspen for the 4th of July and spent Saturday night at the Hotel Jerome. It was so good to get away and to spend time with Liam, just the three of us.
Liam had a blast at the parade and started making fire engine sounds as the trucks went by. That was really the beginning of a weekend of chatter (: He then began Sunday morning to say Maaaa. Then in the car and on our drive home he was on to Maaamaaa. We had 4 hours in the car to practice so I am sure he had enough of me talking. He now is officially saying mama. His first word was spoken on the 5th of July and it was the most precious voice I have heard. Last Monday, the 6th he said daaa and then today we found out he tried to say milk. He is catching on fast and it is so exciting. I hardly even notice Liams "ears" now. The processors are part of him and who he is. It is so exciting to know he will only continue to grow and learn more language.

I passed a cricket

I went on a jog today and on the trail I passed a cricket. Or shall I say a cricket passed me. Why does a cricket matter? Because this time last year it sucked when I heard a cricket chirp because Liam couldn't hear it. My baby, who was at the time a month old was not only deaf but profoundly deaf. I hated crickets, birds, anything remotely beautiful sounding because it only reminded me of what Liam couldn't hear and what my child was missing out on. So today while I ran a cricket passed in front of me across a trail. That has never happened before. I cannot say I pass a lot of crickets so to me this was symbolic of our journey and how Liam can now hear. Now when I see crickets or birds I am happy and rejoice because Liam can hear.
It's a good thing I didn't squish the little guy, otherwise I couldn't write about my experience today (:

One week of hearing today, May 18th, 2010

I won't lie, it has been hard having Liam's ears on all the time. Hard because he doesn't want them on and hard because they look so big on his little head. I have to get over it, accept it and move on because the most important thing for Liam is to have access to sound and to teach him speech and not to be self conscious of his bionic ears. How did we get to be a society where appearances matter so much? Any place I take Liam people look at his new set of ears. Is it out of curiosity or are they wondering why my son is different. At times I get angry but then again I think to myself, wouldn't I do the same. I mean wouldn't I be curious too if I saw a child with bionic ears?
We will get through this as a family and I will become stronger as the days and years pass. Liam is perfect in every way shape and form despite being without one of the senses. I often look at him as he is studying a leaf or a bug or a blueberry. He studies things because he can. He doesn't have to hear everything that is around him, instead he takes it all in and dissects life. I often wonder if someday he will say the heck with his implants and that he prefers to be without sound. That will be his choice but for now we will continue to grow together and become stronger than ever.

Liam hears, Liam cries

Today was the big day. Liam's implants were activated around 11:00 this morning.

We began our day with a 9am appointment with the surgeon to make sure all was healing well and then we met with the audiologist, Allison, who conducted the activation. I have to say that it wasn't as dramatic as I thought it would be but it was still incredible. I had imagined saying the first words, since that is what we were told, but it didn't unfold that way. Instead, we put the external processors on his head and Allison adjusted the volume. Starting off very low and Liam didn't seem to think much of anything. She then dialed the sound up a bit more. Still not much of a response. Then she began to dial it up a tad bit more and all you could see was Liam with a blank look on his face and then a loud cry, red face and tears rolling down his cheeks. It wasn't at all what I had anticipated but then again I didn't know what to expect.

So far so good in terms of him leaving the external processor on. He has been amazing and actually turns to sound. Not a lot of turning yet, but Grandma dropped a wooden lid tonight while Charles and I were out for dinner and she said Liam just stopped in his tracks, looked at her, and didn't know what to do. She didn't want him to be scared so she began to laugh and as soon as she did, Liam followed.
So that is our story of activation. Now the hearing journey begins and what a load that has been lifted off. Liam is incredible. Just incredible.

pulling Mira's hair

Pre-op 4/18/10

9:32 pm and we are finally at home, all in bed, including baby Lion. What a day. It began at 5:00 this morning with Charles watch alarm going off. I was exhausted and wanted to fall back asleep. Then I remembered....then again, how could I have forgotten. Liam was scheduled for bi-lateral cochlear implant surgery at Swedish hospital. My heart began to race because I knew there is always the possibility of complications. It was also the thought of someone taking my child and the possibility that I may never see him again. The entire situation was just scary.
We arrived at Swedish at 7:00, checked in and then we were off to pre-op for the tests and procedures that included giving Liam what they call "two cocktails". The nurses wouldn't stop talking to him, smiling at him and inquiring. They couldn't get over his contagious smile or his lovable presence. I did fine until I saw Liam get a little loopy. His wave wasn't quite as strong, his eyes glazed over and his little spark and twinkle left his eyes. It was hard to see. The we were asked who would like to go in with the anaesthesiologist while they put Liam under. Charles was the first to volunteer and I knew it would not have been a good thing for me to witness.
I said my goodbyes as I said good-bye to one of the two most important people in my life.
Charles was in with Liam for only 10 min. or so and then he came and got me while Liam went into surgery. We both went to the waiting room until we got the call. All went went. A flawless surgery. About 3 hours total. The Dr. said Liam will do spectacular but I never doubted he wouldn't.
We made it. It is done. The hardest part is over. A year of waiting, a year of sadness but happiness all at once, a year of wonder and anticipation. All I can say is "what a relief". A huge burden has left us tonight. Now if Liam sleeps through the night all will be well. Bandages will be removed tomorrow.

And now for the next adventure....the activation

APPROVAL

I received a text message from Charles on the 4th of March around 10 am stating that Liam had been approved by United Healthcare for bilateral implants. I didn't wish to get the news over a text, but as usual I was on the phone for work when he kept trying to call me with the great news but couldn't get through. I don't blame him.
It is a miracle. His surgery will be on the 28th of April, just 6 days after he turns one. Activation of the implants will be done on May 11th. What does that mean? It means that Liam has a chance to hear, to speak, to listen and learn spoken language. It means intense auditory verbal therapy and much practice but with time and patience he should catch up to this "hearing age" quickly.
We are so excited we cannot stand it. Just to think Liam will be exposed to sound in 2 months. It blows my mind. God is good to us and he has been so faithful during this journey. Time has gone fast and I have healed from all the sadness and the pain. I feel like me again. I feel happy and joyful and no longer sad about what could have been. Instead it is what was given to me and I honestly could not have asked for a better son.

Liam 2/28/10

Liam at breakfast with our friends Vera, Carlos and Adrian
To the left you will see Charles holding up baby Adrian's processor from his implant up to Liam's head to see what it will look like. Adrian's parents chose a brown color. We are either going to go with black or white. The white looks like ipod white and very clean looking. In five years they will be even smaller. Simply amazing

Our breakfast with Adrian

What a wonderful morning. We met our friends who recently had their son, Adrian, implanted at 9 months. We saw him for the first time today at breakfast in Boulder with baby Liam. His implants are the newest, latest and greatest and he didn't even seem to mind they were on. I was shocked being that a lot of our friends with children who have implants complain that keeping them on their tiny head is the hardest part. He is doing great with his bionic ears and we are so amazed still that there is technology out their to enable kids to have spoken language and to hear sound.

Lion's newest talents include waving to and fro, winking...yes, we wink at him and he "winks" back with both eyes, with all his might opening and closing his big blue eyes. It is about the funniest thing I have seen him do yet. He is into everything, including my weights in the basement, and learning sign. We are only teaching but a few signs for now since after he will be implanted we will focus on auditory verbal and will most likely drop the sign.

Liam has 2 teeth on top and 4 in the bottom. I cannot believe how time is flying. He isn't walking by himself yet, but I am sure once he gets up the confidence to break away from the ottoman, he will be going full blast.

We have all been sick for about two weeks now. First, me with the croup, then Charles got a cold and now Liam. I never thought I would see the day when Charles was really sick because he has such a strong immune system.
Well, lets hope this week will be the week we hear something back from United Healthcare. Hopefully good news and a surgery date!

How can you be so happy?

If there is one lesson I learned today it was that despite our challenges in life we are in control of our happiness. I can truly say this is true seeing how happy our little Liam is despite his hearing loss, despite a red bum from diaper rash, despite his sniffles. He just continues to thrive and be as happy as can be despite it all. When I wake up in the morning I go to his room to see a smile from ear to ear peaking through his wooden crib slats. His day and my day begin with happiness, trust and love. What a way to start the day. What a way to end it. I look forward to continue to learn about life from my son. Boy do I love him.

The joy of Motherhood

Liam will be 10 months on the 22nd. It has all gone by so fast and we are still waiting for the letter from United Healthcare. Every day I look forward to opening the mail box to see if a letter awaits with the return address from United. Will it be a joyful letter, a life changing letter or a letter telling us we have been denied once again? They said that they approved bi-lateral implants at 12 months so I hope and pray they mean it.

Our friends son just received implants on the 10th and he is 9 months and doing great. I so wish Liam was in the same boat but we just enjoy him for who he is now and enjoy him every day. I cannot believe how his smile lights up a room and how his eyes communicate to us since he is yet unable to. He is using a few signs like "milk" and "more" and will blow me an occasional kiss and wave and clap when he sees his Mom or Dad. When he claps it is like he is saying "hang in there, be joyful, we are almost there Mom and Dad". Just thinking about him right now as he sleeps makes me want to cry b/c I love that little guy so much.

Tonight we went to dinner with some dear friends of ours and as we sat their eating pizza, my friend said to me " It just seems like Liam can hear us". It does seem as though Liam can hear since he is so observant and alert. He has learned to listen with his eyes and I often forget he is living in a silent world. What will it be like when he can hear the birds chirp or the rain hit against the window during a storm? Or the clash or thunder or a snoring pug? I cannot wait. To teach him to hear, teach him to love and teach him to never take his health and technology for granted. If we would have had Liam 5 or 6 years ago we wouldn't have had the opportunity we have today.

After hearing of Liam's deafness

My Mother couldn't seem to get through to me after I had learned of Liam's hearing loss. A note she left for me that has been sitting on my desk at home for almost 9 months is something that has stuck with me and is so true.

"One of the most tragic things I know is that all of us tend to put off living. We dream of some magical garden over the horizon instead of enjoying the roses that are blooming outside of our window today"

Liam is my garden of roses.

Snow Globe

It's the 11th of January. It is supposed to be a new year.... a year of starting over, resolutions and renewal. It hasn't been that way for me or should I say it hasn't been for the past 11 days. I am a little discouraged right now because of the insurance denial and then to find out today that most likely our appeal to United will not help in getting us any closer to an implant date. They, United, state that the FDA recommends implants at 12months. That being said, they will follow the books despite the research supporting early implantation and they won't listen. If only the underwriters had a little compassion. No, I take that back, not the underwriters, the CEO's. What is wrong with us? What is wrong with this world to deny a child of hearing when it is imperative for their development? What is wrong with us to allow people without insurance to die or go on being sick or mentally ill because they cannot afford it or because they are denied? Uhhhh, I just want to cry.
Today I was at my Endocrinologists office waiting for to have blood drawn. I have a hypo thyroid, or under active thyroid, and there was a concern that something may be wrong. Anyway, as I waited in the waiting room a gentlemen in a wheel chair rolled in and checked in with the receptionist. He was about 55 or 60, glasses, thin and balding, wearing a blanket instead of a coat. I couldn't take my eyes off of him because there was something so kind about his presence. I wondered to myself, because he has lived with a disability all his life, has he been treated fairly by insurance companies and has he had a good life. I mean, has he had a lot of financial challenges because he has been in a wheel chair? He could speak but not very clear. I just began to silently pray for him. Pray that God would bless him and his life and that he was loved. This is what I thought about all day today. People just want to be loved and treated fairly. So why are we all about the dollar? Why are people denied health care? Why do people go bankrupt and loose their homes, their marriage due to stress, their health because they cannot afford the proper treatments and doctors. Have we really come to be a society who is all about the bottom dollar? Yes, we have and that is why Liam will not hear for 3 more months. Thank you Mr. CEO of United. I hope you enjoy your bonus this year because you put off paying for my son's implants so you could have more money for that 3rd house on the lake front.

I got home from work and gave Liam his nightly bath. He splashed around in the tub enjoying every minute of it. His smile will light up a room and I could watch him play with his bath toys for hours. I took him out of the tub, dried him off, gave him a little foot massage and got him dressed. We sat together in our brown and white glider and stared at his little Poo snow globe. I shook the globe and the glitter would swirl and move all over Poo Bear and Piglet. Liam took it all in. I then turned the globe over to where you can wind it up and listen to it play a song. I wound it up and put Liam's hands on the globe to feel the vibrations of the music. When I first received the snow globe it was a gift. A gift to play music and help calm a baby or put them to sleep. This wasn't the case for us. Instead I heard the music while Liam watched in silence. What does it feel like, seem like? Tonight I took him upstairs and the room was dark. It was quite and I reached for the light switch. This is what it must feel like to be deaf. Pure silence, darkness, black. It was hard for me to think about.

Insurance Denial

We returned home from our 2 week Christmas vacation from the Midwest to find a letter from United Heathcare. It is January 2nd. I was hoping for the best, a letter stating they would approve Liam's bilateral implants. What we got was just the opposite. A denial letter. The first denial letter and we assume more to come based on the history of insurance companies. I didn't really know how to react. At first I thought, it was OK because Liam will be approved. Then I became very sad. Sad because it just means one more month of waiting, one more month my child cannot hear, one more month he has to in a silent world. I am mad, disappointed and so frustrated but there is nothing I can do. This is the way it is, so we were told by the audiologist. Our friend who has a son just a few weeks younger then Liam was approved for bilateral implants at 9 months. No denial letter. They have terrific insurance in my opinion. He will be the first child to receive bi-lateral implants at such a young age. What a blessing. There surgery is scheduled for February 10th.

I asked myself, do I let this bother me and cry and get upset and ruin our Saturday or do I accept it and move on? I accepted it. I have to cherish each and every day. Liam is such a joy despite his hearing loss. He doesn't care. He doesn't know any different.

The other day in the car we were driving back to Colorado from Illinois. I looked in the back seat to find Liam examining and studying a small red ribbon that was tied around his little Christmas bears neck. He ever so gently moved the red satin ribbon between his little 8 month old fingers, so fascinated and mesmerised. These are the things that hearing people take for granted. We don't study and appreciate the little things. We take so much for granted. I have learned to stop on walks with Liam and let him smell the flowers, touch the leaves on trees, run his hands through the grass and just enjoy life.