On this, the first day of 2013, I find myself looking ahead to the new year and wondering what it will bring for our family. Hopefully more blogging.
Lucas just celebrated his 5th birthday. The weekend of his birthday fell exactly the way it did at his birth, so I did a lot of reflecting - the crazy blur that was his birth 5 weeks too early, and of course, all the health issues in the days and weeks to follow. If only I knew then what I know now, I could have saved myself so much heartache. The only word I can use to describe my feeling of understanding is perspective. Five years have brought me a lot of perspective when it comes to parenting and hearing loss.
I was home to celebrate with him on his big day (because it was on a Sunday!), and celebrate we did. We spent the afternoon at Dutch Winter Wonderland, with our dear friends who live down the street.
Nora is 14 months and is a really sweet little girl. I'm having so much fun watching her grow! Her natural language milestones are also incredibly fascinating to me, along with her acquisition of Spanish. We're teaching her ASL signs with Spanish, and she uses quite a few already: milk, water, cheese, grapes, eat, daddy, cat, more, bath, sleep, all done, please and monkey. She doesn't talk much, but says mama, dada, "ga" (for gato = cat), up, hi, uh-oh and tickle. She growls for a lion, and quacks like a duck. She waves hi and bye, likes to give butzers (raspberries), LOVES to read books, and is obsessed with our cats. She just started walking (as her chosen means of getting around) at Christmas, although she's been knee walking for about 2 months. Check it out... it's pretty amusing:
We had family portraits taken at the end of October. Here she is at 12 months:
Lucas celebrates his 4th hearing birthday in just 8 short days. I haven't decided what we're going to do yet, but something fun. I don't know why, but I'm even more excited for his hearing birthday than his real birthday. It makes me almost giddy just thinking about it. Lucas continues to progress beautifully. He was tested this fall and is scoring at and above age appropriate levels in all areas of language. He will start Kindergarten in the fall at our local elementary school, and will be completely mainstreamed. This is what we've been aiming for for the past 5 years.
I would really like to blog more this year, and I'm going to try and find time to do so. I want to chronicle Nora's bilingual journey, as it is almost as fascinating as Lucas's hearing journey. Lucas is learning Spanish too, just not the same as Nora. In the middle of the night the other night, he asked me for "más agua" (more water).
May your new year be blessed with new experiences!
Wow, it's been a long time. There are no excuses, but several explanations for my blog hiatus. Although I have SIGNIFICANTLY more time on my hands than if I were working, having two kids is keeping me very busy! Mostly though, Lucas's hearing loss journey has slowed down. It has peeked and plateaued. We are right where we'd like to be.
Despite the missing processor that we are still desperately searching for, Lucas continues to progress remarkably well, and especially thrive in his mainstream setting. He continues to take swimming lessons and has started playing soccer. He has lots of friends with whom he communicates brilliantly. He is doing everything that I would expect of a typical 4-year-old boy.
Our biggest buzz word around here lately is advocacy... in several different contexts. I like to believe that I moved into advocacy mode when I stopped grieving his hearing loss when Lucas was 6 months old and I began this blog. Before that, I couldn't read about other children with hearing loss, because it was just too painful. Thank goodness I got over that quickly and began advocating for my child. I believe that this advocacy mode will last for a long time to come, at least until he goes to college and I now longer have much input. He will then have to fully advocate for himself. And those are the skills that we have begun to work on... NOW.
Prior to re-writing his IEP this year, Lucas received services at home from a teacher of the deaf once a week for 3 out of 4 weeks a month, with the 4th visit being at preschool. She now pushes in to his classroom every other week, with her goal being to teach him self-advocacy skills. He is learning to speak up when he doesn't hear, to ask others to repeat themselves, to position himself strategically in the best location in the classroom (away from loud objects such as radiators or music, as close as possible to the teacher). These skills are important LIFE skills, and will be most important when he enters grade school.
Although we're teaching him self-advocacy, I'm still advocating for him from the sidelines. I have mastered the 1-minute here's-what-you-need-to-know-about-his-ears-and-his-needs speech. This has been helpful for swim lessons, soccer practice and church. It goes something like this:
"Hi, my son's name is Lucas and he's deaf. (pause and let it sink in)... But, he hears and speaks really well with his cochlear implants (pause longer this time for the processing of an illogical concept)... I have two tips for you... get his attention before you speak to him, and be as close to him as possible when you do. Don't worry if one of the magnets falls off, because he can put it back on himself, but if the processor falls off, he may need some help positioning it back on his ear. Okay, thanks, bye... and good luck."
I'm also advocating for our local children with hearing loss. By starting a support group, we are helping each other advocate, informing each other about how to give our children the care and services they need and deserve, every step of the way.
Recently I visited my local state senator to speak to him personally about supporting oral deaf education in Pennsylvania. The idea was not all my own, but it made me feel incredibly empowered, like I could truly make a difference on a broader level. What was really cool, is that I took Lucas with me, so he could speak for himself. He certainly left a lasting impression on the senator, who was thoroughly impressed at Lucas's ability to express himself. I got to do some educating on cochlear implants (one of my favorite things to do), and the senator gave me a 100% commitment to writing a letter of support, which was my request. I also encouraged him to continue to support Medicaid in PA, without which Lucas may not have one and would certainly not have two cochlear implants. We would be paying for that first surgery for the next 50 years, and would probably both have 2 additional part-time jobs. He agreed that it was worth every penny the state spent.
Life is good, and we are immensely blessed by this hearing loss journey. It has opened many new doors and experiences, and we've met so many people whose paths we never would have crossed.
"Alone we can do so little; together we can do so much." ~ Helen Keller
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!
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.
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.
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.
Lucas was born with profound bilateral sensorineural hearing loss to two hearing parents. He wore hearing aids starting at 3 months, but he got no benefit from them, as we soon found out. He received a cochlear implant in his right ear 3 days after his first birthday. His second ear was implanted 1 month before his third birthday. Cochlear implants have changed Lucas's life immensely. This site was developed to chronicle his life and progress learning to listen and speak!