three years

Happy 3rd Hearing Birthday, Lucas!

It's been three years since Lucas's hearing journey began. We were told that day to keep our hopes high and our expectations low, but we learned quickly that he would far exceed our expectations. We did, however, have no idea that we'd be where we are today... with a little boy who never stops talking, who is ahead of his hearing peers in terms of language, who very successfully attends a mainstream preschool, who is very social and makes friends easily, and who is just a typical kid. 

Life is so normal, and easy (ok, minus the newborn...) right now, that sometimes I forget how far we've come. Today I sat down with Lucas and watched all of his youtube videos from his first year of life. I'm so thankful that I chronicled his listening/speaking/communicating milestones in this way, because I forget about the baby steps and the joy in the little things that first hearing year. Lucas got a kick out of the videos, and I cried a lot. He kept wanting to know why I was crying. My response? "It's complicated." It's tough to explain to a 4-year-old the sorrow, joy and relief that those videos evoked. 

I forget sometimes that he went from beeps and buzzes to coherent receptive language in less than 3 months... that by 6 months he had 11 words/approximations... that by 12 months he was caught up to his hearing peers. I forget sometimes how incredibly hard we worked that year. The messy house you see in all of his videos? Totally worth it in exchange for more mommy therapy. That 7 month hiatus I took from my job to teach Lucas to listen and speak? It was worth every moment spent and every penny lost. 

We have been incredibly blessed by this journey. We are forever grateful to Graeme Clark, the inventor of the cochlear implant, Dr. K. for his skillful implantation, and all of his therapists, who have helped teach him to listen and speak. We can't wait to see what this next year will bring for him. Enjoy the video from his activation day!

moments

It's moments like this that I'd like to freeze in time...

...my two beautiful children on Christmas Eve, all dressed up for church and festivities. Next year, Nora will be well on her way to being a little person, leaving her babyhood.

It's moments like this that made my heart melt... 

...as I watched my little boy turn four, and beamed with pride at all the obstacles he's overcome in his short life.

It's moments like this afternoon at church, when I first noticed the sign language interpreter beautifully interpret the Christmas hymns, and froze for a moment, imagining how our lives might have been... not bad, not sad, just different. 

It's moments like that, when I marvel at modern medical miracles like the cochlear implant that allow the deaf to hear, that allow my son to enjoy the sounds of Christmas, just like me, just like his baby sister.

Without this technology, we wouldn't have heard Lucas ask us where the camel was in the Christmas sermon play, we wouldn't have reminded him that he needed to whisper during the service, and we wouldn't have heard him attempt to *sing* along to the hymns.

It's moments like right now, Christmas Eve, when I sit  her with immense gratitude to Graeme Clark and Dr. K, for giving this gift of sound to my son, and many other deaf children around the world, changing the way they experience Christmas, interact with their family, and take on the world. 

It's moments like those at church this afternoon that will never get old, that we will never take for granted. 

Merry Christmas! Wishing you peace, love and joy!

Dear Lucas

Dear Lucas,

You've been a big brother for almost 7 weeks now. What an awesome time it has been (especially when Daddy was home). We've tried really hard to make you feel special, and so have all of our family and friends with their little presents to you.

You were so lucky to have met Nora just a few minutes after she was born. What a special moment for mommy! You are so gentle when you hold her, and you love to give her hugs and kisses (even if you do smother her once in a while).

You are Mommy's little helper! You get me supplies when I'm tied up, and it's even good practice for you with following multi-step directions. "Please get me her blanket and the pink burp cloth in the basket." Once a therapy mommy, always a therapy mommy.

Nora is a more challenging baby than you were in some ways. She's not as content as you were, but my days with her are much more carefree than my early days with you were. My biggest concern with her is when she's going to want to eat next or whether she's going to keep me up all night, as opposed to whether you could hear or would need open heart surgery. As a result, I'm more willing to share her with others this time around. With you... not so much.

On the day she was born, she had her hearing tested... right in the room with Mommy. It was extremely emotional, and I cried the whole time. The nurses in the hospital still need some sensitivity training and education. Even with knowledge of your history, they still told me not to worry about it, and if she didn't pass, it was probably just fluid in her ears. We're the wrong family to tell that to! Here is the screen that we saw:

She passed her hearing screening in both ears. She can hear. The results really evoked mixed emotions for me. Although we are elated that Nora will not have to endure what you did (the tests, surgeries, therapies, etc) or go through the life long struggles of living with a hearing loss, somehow rejoicing too much in the results was also the same as saying that you are not perfect just the way you are, and that we somehow love you less. Needless to say, we have not shouted her hearing results from the rooftops with joy, but rather whispered them with some sense of relief and ease. It's very personal. I think only some of my fellow hearing loss mommies might understand.

I worry about the day when you start to ask me why Nora doesn't have ears like you. For now, you don't seem to be particularly concerned about it. ever. We have yet to have any of those difficult conversations. Sometimes I try to initiate them, and you just move on. You know what your ears are called, and that you need them to hear, and that's about it. Although you ask "why" about 1,000 times a day, that has yet to be one of your questions. The word "deaf" has yet to come up either. Maybe I'm as bad as the audiologists we worked with in the very beginning, but I'm just so hesitant to teach you to label yourself already. You are still only 3. But not for long!

I'm enjoying my time at home with you and Nora IMMENSELY. You did ask me the other day if I was going to work so Oma could wake you up in the morning. Nope... not for 9 more months. Yippee!

I can't wait to watch you grow up with Nora. We can only hope and pray that she is as sweet, witty and feisty as you are. You will teach her much about the world around her. It's scary to think that by the time Nora is your current age, you'll be almost 8. I hope that day doesn't come too soon.

I love you with all of my heart,

Mommy
xoxoxo

introducing...

Nora Susanna

born mid-October 2011

6 lb 10 oz

20 in

Lucas is absolutely smitten by her. I can't wait to watch them grow up together. She is one lucky girl.

We are so proud of how well he has adjusted. He is not at all jealous, and just has pure love for her. This is such an incredibly joyful time for us. There's nothing in the world like having BOTH babies want to cuddle all the time. Our family is complete.

Ten on Tuesday

What's new with Lucas?

1. I've been home on medical leave for a week now until the baby comes. We're trying to avoid another premature birth, and I'm really glad that my doctor had enough insight to suggest that I stay home. I might be blogging a little bit more now too. :)

2. Lucas is so excited for his baby sister. I hope it continues. When I asked him the other night how he's going to help, he replied, "I'm going to change her diaper, help put her to bed, read her stories, and she's going to sleep over at Oma's house." Priceless.

3. In preparation for the big birth-day, Lucas has been spending the night at my parents' house once a week. It is the highlight of his week. I always ask ahead of time, and then make him call and ask too. I LOVE seeing him talk on the phone. It always amazes me, and I believe it always will.

4. I love Fall! I used to think Spring was my favorite time of year, but it's definitely Fall. I love the cooler weather (with a passion), and I love watching the leaves change colors. It's also the season of fairs, and pumpkin patches, and new vocabulary topics. I enjoy living in a part of the country that sees all 4 seasons.

5. Speaking of weather... this weather makes me want to spend time outside, as opposed to inside like during our humid summer. Lucas plays so nicely with our older neighborhood children, and we can just sit in the driveway, and watch him play from a distance. I'm so happy to live in our new house, and to be part of a nice little community. We've been in our house a little over a year now.

6. Last week was our town's annual farm show. Lucas has been looking forward to it all year. We told him that as soon as the leaves started to turn colors that it would be time for the farm show. Lo and behold... the leaves started to change and it was farm show time! He got to see cows, pigs, sheep, goats, alpacas, bunnies, and a few other animals. We went every day. Here's a picture from the festivities:

7. I've been enjoying my (rest) time at home, but I'm also taking advantage of celebrating autumn with little Lucas. We decorated the house, and last week we made "Halloween" cupcakes to share with his neighborhood friends. He was so proud of these!

8. Our little fish is taking learn-to-swim lessons at a local retirement community. We're going to continue through the winter. I'm so incredibly thankful for the ability to waterproof his CI, as lessons would not go as smoothly without him being able to hear. During the first class, I decided not even to mention to his instructor that he's deaf. I wanted to see how he would do. Other than the swimming cap (which is a little strange for a 3-year-old, but not too out of the ordinary), his CI was not visible, so no one knew his little "secret". Admittedly, it was kind of nice to not have immediate looks or questions. He did pretty well, but it was apparent that he would need some minor accommodations so it doesn't appear that he's just ignoring his instructor! The indoor pool area echoes excessively, and she really needs to be within close proximity to him (and his microphone for that matter) for him to hear her well. She was surprised when I told her, and very happy to accommodate.

9. One month ago, we welcomed the newest addition to our extended family, my niece Audrey! She is Ryan's little sister, and was born healthy and full-term. Lucas and Ryan are a month apart, and now Audrey and our baby girl will be about a month or so apart too. And no, we didn't plan it that way, but we're so excited about it! Our boys are great buddies, and we hope that the girls will grow up to be great friends also.

10. I'm 36 weeks pregnant today, and it's quite a milestone to have reached! I'm now a few days past the point when I delivered Lucas. Every day we are one step closer to bringing home a healthy baby girl! Here's a photo of me with Lucas a little over a week ago. Let the FINAL COUNTDOWN begin!

language sample - 3 year 9 months

Here's a spontaneous language sample from a few weeks ago. I wanted to record him talking about going to the beach, as that seems to be his highlight from this summer. Enjoy!

naïve

A better name for this post would be not-so-naïve.

When I was pregnant with Lucas, I remember quite vividly having my first ultrasound at 20 weeks. I knew that at that time, we would be able to see if our baby was "structurally sound," if you will, in addition to possibly finding out the gender. We had no gender success (for another few ultrasounds), but we learned that day that Lucas had 10 fingers and 10 toes, and I felt so relieved. SO RELIEVED! As if 10 fingers and 10 toes could predict the health of my baby. 

Flash forward to his premature birth, a result of a premature rupture of membranes at 35 weeks (my water broke), followed by an 8-day NICU stay (I was discharged without him on Christmas Day!), 3 failed newborn hearing screenings, a detected heart murmur, and another birth defect. We left the NICU with a neonatologist (who should NOT work with NICU families) telling us that Lucas was going to die because of his heart defect... never mind his hearing. To say that the first few weeks of his life were difficult is a VAST understatement. I woke him every 3 hours for the first month of his life to feed him. And, I didn't put him down for about 2 months. Really. We even slept together on the couch. Add to it the fact that I spent 10 hours a day trying to (unsuccessfully) breastfeed him for the first 3 months until he was hospitalized with RSV for 5 days, at which point I decided to pump full time for the next 10 months. He was then hospitalized again for 5 days at 6 months old with suspected meningitis. Those first few months are seriously a blur. He had 2 sedated MRIs, a CT scan and 2 surgeries by the time he turned 1. I never once had a carefree day with him. Never even once. There's a CD I used to listen to during that time to try and relax. When I hear it now, it makes me absolutely sick.

I'm not looking for pity at all, but that was my reality. I now know that it really could have been much worse. We have so many blessings to count. But it still wasn't easy, and you'll never understand until you have a similar experience. Lucas is the center of my world. His joy brings me happiness every.single.day. His lust for life clouds over the intense sorrow and worry I had for him as a newborn. His success is because of a fighting spirit on both his part and ours. We now only look with lots and lots of hope toward the future. We are at a great point in life with Lucas, and we hardly think about that first, difficult year.

However, with the imminent arrival of our baby girl, Lucas's birth and infancy are all that's on my mind. It's the only thing I know. And this time around, I'm not so naïve. 

I know the devastating effects of premature birth. I know the heartbreak of a NICU stay. I know the struggle of unsuccessful breastfeeding. I know the stress of several difficult diagnoses paired with numerous specialist appointments 90 miles away. I know the anxiety of not one, but 6 surgeries for my child, in addition to several painful tests. 

But, I also know how to try and prevent premature birth with closely-followed prenatal care. I know that my baby will probably come home after a NICU stay (at least at this point in my pregnancy). I know that I can still pump breast milk and give my baby the nutrition she deserves. I know how to prepare and pack an infant for a long day of specialist visits. I know how to prepare a child (and myself) for surgery and tests. I know where to look for and find invaluable parent support! AND I know how to teach a baby to listen and speak.

We know that it's certainly possible that our little girl may have a hearing loss. I know families with 1 of 4 children with EVA, and I know families with 4 out of 4 children with EVA. It is absolutely not out of the realm of possibilities. It will still be devastating, and we will mourn for a time, but we will be prepared. And we know what a bright future she will have. She has an AMAZING big brother to look up to. At this point, it is the least of my worries. And, if she CAN hear, she might just be the amazing 6-month old talking baby (haha), because auditory-verbal therapy is an integral part of our parenting lifestyle.

This one has got to be easier though, right? Here's praying for an easy next 2 weeks (to full-term), a smooth delivery, and most of all... a HEALTHY baby girl who gets to go home when her mommy is discharged. Bring it on.