Taking Care of Myself

One of the first things that I tell Moms who I meet that are early on in their child's hearing loss and Cochlear Implant journey is to remember to take care of themselves. I always suggest that they make time for things that make them happy and bring them a bit of peace. Unfortunately, I wasn't practicing what I preached, which left my family a huge GIANT BALL OF STRESS instead of a happy wife and fun Mommy. I found that I was an unhappy shell of who I used to be, only concerned with articulation testing, IEP meetings, equipment upgrades, and the constant, constant CONSTANT fights with insurance companies.

I finally joined a gym where there is CHILD CARE, and I've been loving the early morning work-outs and yoga classes. I decided to finally take a cake decorating class that I've been putting off and it starts next week. And, I'm planning on a HUGE craft room overhaul. I've been scrapbooking for close to 5 years now, and I need to weed out the old and organize my projects. I also have made it a point to see my girlfriends (without our kids!) at least once a week. I thrive when I'm with my girls. They make me laugh and take my mind off of the day to day craziness. I hope that by taking my own advice I can get back to the gal I (and Chuck) love.

More on Resolutions

Today I had an opportunity to really test out my New Years Resolution of working on patience, and I somehow managed my way through 2 meltdowns (one in the middle of a busy Northwest DC street), 1 diaper blow-out, 1 near accident in Bethesda thanks to a jerk who cut me off, and 1 very cranky preschooler who has "sassy" as his middle name. I found peace in those moments (channeling a dear friend of mine who lives around the corner from me, who always seems to find peace in chaos). After I found peace, I had a sense of calm that was completely unfamiliar. And I can't wait to feel it again.

I do think that your level of patience and level of stress in your life go hand in hand (although, I'm not sure how my dear friend who lives around the corner does find so much peace because I do know that she is stressed). So, in finding patience, I've learned that I need to cut down on the stress.

I hate to use this label, but as a Mom to a child with "Special Needs", we have a level of stress that will never go down. We are always anticipating, always waiting for the next shoe to drop. We're always on the defense, in our warrior Mom mode, ready with our armor, doing anything we can to fight for our child. That particular stress is so deeply embedded in my bones, that I really don't think about it anymore. It's a part of my body, partially to blame for the baggy eyes and too-early crows feet. I can do a pretty good job of hiding that stress when it does start to seep out. A strained laugh, a little bit of concealer, and a glass of wine usually do the trick. I get in trouble though when more and more stress is layered on top of that "in my bones" stress. Then it gets bad.

I started peeling back my layers of stress today, and I found that maybe really the only way to make it to my goal of finding more patience is to also find a way to be less stressed in my life. Some of my layers are so real and so important, that there's no way to rid them. I will ALWAYS be concerned about our financial future. We will ALWAYS want more family time. However, there were so many layers of things that didn't need to be there. And I can do something about them. I need to let them go. Maybe if I didn't have the "deep in my bones" stress that I have that goes along with raising a deaf child, I'd be able to deal a bit better. While this stress is a part of who I am, it also maxxes me out at times. I then am suffocated by the layers and layers of both little and big things, and I falter. I become the Mom with no patience. The wife who is annoyed. The friend who is hurt. I become the person I dread.

I'm obviously going to have this "deep in my bones" stress for as long as I shall live. I can't do anything about it. But all these little layers, these layers of things that really don't matter, I can rid myself of them. I can chose to say No. I can chose to not care. I can chose to ignore. I can chose my focus, which will always be advocating for Christian and giving my family the best of me everyday.

New Years Resolution

I hate New Years Resolutions. It's like giving things up for Lent...I always set myself up for failure, and then get all that Catholic Guilt on my shoulders for the entire Easter season. I usually end up gorging myself on chocolate in secret, then confess, and then feel guilty all over again. Ugh.

However, I decided I would try one last year to actually make a resolution and stick to it. I have New Years Wishes (always trying to eat a veggie with every meal, exercising at least 30 minutes everyday), and won't feel too bad if I fall of the wagon with those. My New Years Resolution for 2010 is to do my best in finding more patience in life. I find that I am constantly pushing my husband and my kids to do things faster and sooner. If it wasn't done yesterday, it's usually not good enough for me. I used to pride myself on running an efficient household, but in reality I was running a RUSHED household. Perhaps by stepping back and letting my 3 year old poke around sometimes really isn't the worst thing. And maybe giving my husband and extra day or so to do a chore will pay off as opposed to a day of nagging. The only area I won't be patient in is concerning Christian's progress with his CI...I think one of the main reasons he's doing SO well is because of his VERY impatient Mother who constantly pushes.

Keep your fingers crossed that I can finally keep this resolution. I sure hope I do.

Like Clockwork

It wouldn't be the holidays without some sort of drama with Christian's CI. Last night while at his grandparent's house, his CI was turning off for no reason. His Gram and Poppa have become quite the troubleshooters with his equipment, and when Chuck and I got the call (we were out running errands with Lily) that they were having some trouble with it, we knew it couldn't be good. They reported that they turned the system on and off again, took the battery out, and then even dismantled all 4 pieces, and it still was acting funny.

When we arrived, I tried everything, and it still wasn't turning on. I finally ran out to the car and got our "emergency kit", which includes a battery cage and a wheel of disposable batteries (we use rechargeables). That seemed to do the trick, but I'm still not convinced that the rechargeable battery is the culprit. I know better than that now, and usually when Christian has these intermittent failures, it's because of the controller or some other connection. So, Christian is wearing his back-up today and his in-school audiologist who was previously employed by Cochlear is going to take a look at it. I'm hoping that she can help us figure out what the issue is AND help us expedite a new part from the company.

I Should Be...

embarrassed, mortified, and ashamed to admit where I am going tonight. But, I'm not.

I'm seeing the best.boy.band.ever....NEW KIDS ON THE BLOCK. And I'm going with two of my besties, and we are going to sing along to all the songs that wore out our tapes on our pink boom boxes back in 1991.

A Mom's Gotta Do What She's Gotta Do. And for me, seeing 30+ year old boy band members dance around, then so be it. And for all you naysayers, don't even pretend that you didn't have all their pictures from Bop and Tiger Beat hanging in your pre-teen bedroom.

Helping me stay organized...

It's hard to believe that my little guy will be starting school next week. Although I'm an event planner by trade, I still need all the help I can get organizing my family's day-to-day activities and various lists that we have going on. Luckily for me, there is Jooners. This site is a great tool for busy families. Check out the list functions, as well as the pre-made planners that are perfect for organizing stuff around the house. There are also some great planners for classroom functions, which would be perfect for Room Moms and teachers.

It's only taken 7 or so months...

So, I finally got a visit from a friendly Montgomery County, MD Department of Traffic and Operations worker this week. I requested several DEAF CHILD signs to be placed around the neighborhood MONTHS AGO. They finally got their act together, and marked our street for placement. We should have them next week.

We live in a lovely, friendly, and all around great neighborhood just outside of DC. My neighbors have been so incredibly supportive with our whole journey with Christian. Yet, I always worry about his safety outside. Now that he's running all over the place, like any other Mommy of a toddler, my heart just sinks. If anything, I just want these signs to make the folks who use our street as a cut through more aware.

Toddler Struggles...

When I was pregnant with Christian, I couldn't stop reading. I got my hands on every book that I possibly could regarding child care. Nursing, Attachment Parenting, Baby-Wearing, Sleep Habits, Sleep Scheduling, Baby Massage, Organic Baby-Food...you name it, I read it. Then, the monkey arrived. The books were put away, and I pretty much forgot everything that I read anyway (other than my sleeping advice from Dr. Marc Weissbluth)

Well, I'm back to reading (AND NO, WE'RE NOT PREGNANT). These days, I'm concentrating more on discipline, dealing with temper tantrums, and general toddlerisms. I picked up this great book a couple of months ago. Christian is a full-on toddler these days. Along with the adorable little aspects of his sweet little personality (like waving to everyone and saying "Hi" to complete strangers), he is also a temper-tantrum, kicking and screaming little monster at times. One of the main points of this book is that we should speak "toddlerease" with our toddlers, which is in essence, cavemen speak. For example, instead of me saying "Christian, would you please stop flinging plates across the kitchen for Mommy?", I should say "Christian, No Throw Plates".

Ok. I get it. It totally makes sense...if you have a "typically hearing" child.

This "caveman" speak totally goes against everything that I try to do with Christian regarding his spoken language and listening skills. I'm supposed to be the positive language model in his life. And now, especially in these crucial weeks after implantation, I want to enrich his little world with as much language as possible. I certainly don't think "No eat socks" is a good way to communicate with him.

So, how am I supposed to discipline him? How do you get across to a deaf kid that you're not happy with his actions? I've tried over-exaggerating my facial expressions, aggressively signing "Stop!" and "No!". And I'm not just concerned about telling him that I don't like it when he grabs things off of the grocery store shelves, I'm concerned about his safety. Will he ever get to a point with his CI when he'll be able to understand my yells to him telling him to look for cars crossing the street?

My good friend Jenny and I talked about this a couple of nights ago while we were having cocktails. She's always rethinking "the norm" when it comes to parenting a toddler. Jenny is a parapalegic, uses a wheelchair, and she happens to have one the spunkiest and sweetest little girls as a daughter I've ever met. Her little girl is almost 2, and it has been such a joy experiencing Mommyhood with her. I asked her how she has figured out her world with her little girl. Jenny put it very simply. She told me it's all just been trial and error.

I decided that I really need to take Jenny's approach and experiment. See what works for us. I'm still going to worry about the safety issues associated with a child with hearing loss. I'm definitely going to continue to work on trying to break through these temper tantrums and outbursts. Most importantly, I'm going to only do what is good for our family.

A little bit more time up in B'more.

I just glanced in my planner, and it looks like we have another crazy week of doctors appointments planned.

We're headed to our audiologist Wednesday morning to get Christian's aids program to function properly with the FM System. That afternoon we have an Auditory Skills test at Hopkins. Thursday morning, we get to head back to Hopkins at 9am for our Psychological Evaluation. In between all of this, we have our Early Intervention weekly appointment and our ASL class.

It's weeks like this where I am so thankful for my "Tina Time". People always ask me "How do you keep it together going through all of this?". I FIRMLY believe that all Moms, regardless of what you are going through with your kids, need time to focus on themselves. I think my "Tina Time" makes me a better Mom and Wife. Maybe it's just a manicure here and there. Or meeting up with my girlfriends for Happy Hour. Or even designating one night during the week to scrapbook (MY OBSESSION). My time keeps me sane. Chuck has always supported me having my time, and always tries to help me find that time in our week. I try to do the same, working around HIS time (he much prefers softball and basketball over manicures and pedicures).

I know at some point, things WILL slow down, and won't be as crazy as they are now. Until then, I'll look forward to my glasses of Pinot, my crop-dates, and my mani-pedis.

St. Patrick's Day Recap...

I'm not Irish, but I did go to The Catholic University of America, where 99% of the student population had a list name that started with a Mc or O'. I traded in my Big Fat Greek heritage to become O'Scarmeas for a day, and partied with my classmates. Post-college, we would mark St. Patrick's Day by celebrating Opening Weekend at The Starboard in Dewey Beach, DE. On the days St. Patty's would fall on work day, we all leave work just a bit early to meet up at The 4 P's in the old neighborhood.

Now that I have my own little leprechaun(who actually IS Irish), I knew that St. Patrick's Day would be a bit more subdued. That is, until by some miracle, I was able to find a sitter and have Chuck take Christian to an appointment at Hopkins so I could attend KEGS AND EGGS. Nothing like getting up at 5:30am to go drinking with some of my friends and see some good bands. It was a much needed break, and MAD PROPS go to my husband for taking one for the team. Check out a recap and some pics here

Tina's Do's and Don'ts....when it comes to your baby's hearing...

I'm sure most of the readers of this blog are familiar with Glamour Magazine's Do's and Don'ts section. You know, the one where they showcase bad pantylines, hideous color combinations, and high-top shoes. I remember in college, my roomies and I would crack up at some of the pictures. There's always one of a girl coming out of a restroom in a restaurant with her skirt tucked in her undies. And then there were the "Do's", the pictures that would inspire us to lay-off the heavy eyeliner and opt for a more subtle look. Or choose the wide-leg trousers instead of the tight stretchy jeans.

Looking back on our 1st Year of Parenthood, but more specifically, our 1st Year as Parents to a Deaf Child, I really could've used a "Do's and Don't" list. So, in an effort to help the Mommy's and Daddy's who may be going through, I figured I would make my own. Now, I know every family is different. And we all have different strategies...so, take my advice for what it is....advice. And always, always, do what is best for YOUR family.

Here it goes:

Do ask questions if your baby fails all or part of the Newborn Hearing Screen.

When will they repeat the test? Who was it done by? Can I get a second opinion? And most importantly, WHAT DOES THIS MEAN?

Don't let the Newborn Hearing Screen folks sugarcoat the results.

This was our biggest mistake, THAT I STILL REGRET. Since Christian was a C-Section baby, they claimed that his failed test "Was completely normal...he probably just has fluid in his ears". I believed them. I took that hope home, and didn't do the research. We went back two weeks later to find that he failed again...with no fluid in his ears.

Do trust your gut feelings.

Regardless if you are a 1st time parent, or a vetran, you have to trust your instincts. You know your baby better than anyone. We had the TOP ENTs in our area tell us our kid could hear fine after doing some pitchfork tests. I KNEW ALL ALONG that my kid couldn't hear the sound. He was just responding to the MOVEMENTS of the doctor's arms.

Don't feel guilty about shopping around for the best doctors for your kid.

There's no time, or room for worrying about hurting a doctor's feelings. Do what is best for your kid.

Do get the right tests for your baby.

Request and ABR for more clarification if you have to. Have an actual audiologist do it, not just a tech. Be prepared to ask questions.

Don't bang pots and pans next to your 3 week old's bassinet.

Trust me. It does NOTHING but make you worry more. You CAN'T change that they can't hear.

Do prepare yourself for long lagtimes between visits, tests, and results.

It happens. No matter where you live. Just be patient. With that being said, take Marielle's Mom's advice too: You also have to fight, fight, fight to get appointments. Be the mom they fear! Call around until you find somone who can see you within a reasonable time.
The secretary at Hopkins and I got to know eachother very well when I called EVERYDAY for Month for Christian!



Do Your Research, and Keep an Open Mind.

Learn about your child's degree of loss. Where do they fall on the Speech Banana? Learn what the Speech Banana is. Research communication options, and don't RULE ANYTHING OUT. I remember feeling how there was NO WAY that my son would use American Sign Language. He was going to speak, and I believed that ASL was NOT going to help him. I'm glad that my husband and I opened our minds and hearts to all of the communication options available. For our family, we chose to use ASL along with spoken English. It works for us. Research what will work for YOUR family.

Don't OVER RESEARCH.

Googling and WebMding "Profound Hearing Loss" everyday, all day won't help. Watching YouTube videos 3 hours straight about kids with Cochlear Implants wont' either. All you'll do is burn yourself out. Take a Break. I enventually did, only after I lost about a week's worth of sleep.

Do make sure you have your county's Early Intervention team in place...EARLY!

It was a very long road to Christian's diagnosis and amplification, and we really didn't get EI involved as soon as I would've liked. The moment you suspect something isn't quite right, CALL THEM.

Don't let your child's hearing loss DEFINE THEM and YOUR FAMILY.

It took me a long time to stop the never ending chorus of "I have a Deaf Baby. I have a Deaf Baby. I have a Deaf Baby" in my head. For a period of time, I let Christian's hearing loss define him, and I REGRET THAT TOO! It took a good friend to smack me to my senses and help me realize there was so much more to my little man. Sure, he couldn't hear quite as well as us, but other than that he was fine. You'll end up missing the little things, like laughs, giggles, and cuddles.

Do make time for your spouse.

When we actually heard the words "Your Son Is Profoundly Deaf", it rocked my world, and it definitely rocked my marriage. Having a new baby already shakes up your world, then couple that with a kid who may have some special needs....wow, it was rough. It's so hard to not take every waking moment to talk about the baby and how he can't hear, what we're going to do about him not hearing, why he's not hearing, etc. My husband and I FELL INTO THAT TRAP. Take a step back. Remind yourselves why you had your beautiful baby to begin with. Take time for eachother. You need eachother now more than ever.

Don't Blame Yourself

I'm a hearing Mommy to a Deaf Baby. I blamed myself everyday for his hearing loss. I tore myself apart thinking that something that I DID caused this. It broke my heart. Then, one day...it clicked. After a serious amount of prayer, I accepted that Christian's loss was completely out of my control. I did everything right during the pregnancy. It just so happens that we carry a gene that just happened to be passed down to our kid. The sleep you lose blaming yourself isn't worth it. Save your energy for your baby.

Finally, DO FIND SUPPORT!

My husband and I are so lucky to have an amazing family, and a very close group of friends who have been there for us throughout our entire journey. Through their prayers and support, we have been able to stay positive and focus on our family. Let your family and friends know what you need from them. THEY WANT TO HELP.

I found an amazing group of parents at the Listen-Up website who have been such an invaluable resource. We share stories, advice, and most importantly, we support eachother. I STRONGLY urge parents of babies who have been diagnosed with a hearing loss to stop by and visit. It helped us out SO much.

By no means am I an expert when it comes to dealing with Hearing Loss. I certainly have moments everyday where I wonder "Is this right? Am I doing what is right for Christian"? This entire year has been such a learning experience for me. I test my own limits, and patience, just as any other Mom does with young children. I still worry everyday. I learned this year to keep an open mind and an open heart. Most importantly, I learned to let go of the guilt, the fear, and the anger. I learned to enjoy my sweet, silly, and absolutely PERFECT little boy for the child that he is.

Because Every Mom Needs a Little "Fabulous" in their life...

I refuse to let Cheerios take over my kitchen...and yes, that is Waterford.