Goals

First of all, I just want to mention that many people have told me recently how this blog tugs at their heart and makes them cry. When I started this blog, I promised to be honest and real at all times. There is no fluff.  I blog about the happy and exciting experiences in this journey, but also about the things that weigh heavily on my heart. This blog serves as many things for me – but mostly an outlet. A place where I can share moments and feelings - whether they are happy or sad. It is not my intent to make anyone cry or feel down, but that is where this journey takes me at times. There are good days then bad, exhilarating then stressful.  Most of the time, I am happy though – I promise! ;)

Anyway, earlier this week, I went out to dinner with a group of people after a meeting for work. I was explaining to everyone how Sophie was doing and that she would be starting a program at an oral deaf school when a colleague asked, “What are your goals for Sophie?” I was dumbfounded. You see, I hardly ever get asked these types of questions. People usually ask how Sophie is doing, smile and nod, and become uncomfortable when my answers turn serious. Even close friends and family hardly ever ask me hard questions like that; they just want to hear the good things – all of the fluff. Not only did I immensely appreciate being asked that question; it really made me think. How do I convey my hopes and dreams for this special child? I muttered something about being mainstreamed at an early age (the best answer I could give in a crowded, noisy restaurant over food and drinks), but I thought about the question my entire drive home.

The truth is, I have many goals for Sophie and for our family. I cannot define it in a single answer, so I began to make a list. I’m sure these goals will change as Sophie grows and flourishes, but these are my hopes today. Some are light and quirky, others are deep and heavy. Some are defined and others immeasurable. All are important:

·         I hope that Sophie quickly learns to put her coil back on her head when it falls off. This will save me much frustration and near-car accidents as I reach back to fix it. (It’s a good thing my arms are freakishly long.)

·         I hope Sophie enjoys going to school and begins to develop a great foundation of language, communication, and listening skills.

·         I hope that she continues to excel in her language development and we are able to overcome hurdles and frustrations with positive outlook and minimal tears.

·         I hope I am able to maintain the positive outlook that I occasionally struggle to keep as the years roll by and Sophie gets older.

·         I hope that she continues to be a morning person like her Daddy and she too will soon be singing songs to me early in the morning, purposefully trying to annoy me.

·         When Sophie realizes she is deaf, I hope she never feels ashamed or embarrassed. I want her to embrace it and understand how special she is. She has given our family a gift that we would never have received otherwise. A gift that is difficult to describe with words.

·         I hope I am able to equip her with the self-esteem she needs to be able to face the world and achieve her dreams.

·         I hope I can teach her to be her own advocate at a young age and she is able to soar through mainstream school with dignity and grace.

·         I hope Sophie understands our decision for her to use cochlear implants, but is able to make her own decision about how she wants to communicate when she is old enough to understand the differences and what they mean for her in this world.

·         I hope I can find the right words to say when she someday says, “I wish I wasn’t deaf.” And I hope I am able to say those words without tears streaming down my face.

·         I hope Sophie is never defined by her hearing loss and is never held back because of it.

And finally, I hope I can hold up my end of the bargain and help Sophie and our family achieve all of these goals.

Please!

Just a cute video to share! I love the face Sophie makes as she says this word:

Almost time...

...for the school year to start! We have about two weeks to go and Sophie could not be more excited! Okay, so she really has no clue, but I am very anxious. :) She is ready to go, complete with new shoes, a new fall wardrobe, and a backpack!

We went to our last audiology session until Sophie starts school a couple weeks ago, but I haven't had time to blog about it. We had another sound booth test and Sophie did great! She is responding to speech at 10-15 dB. My sister was with me this time because Jared had a meeting and there were two times that Sophie detected a sound that neither one of us heard. Absolutely amazing. Our audiologist also performed an Early Speech Perception test to determine how well Sophie understands speech. I was a little uncertain because they normally do not do the test on children as young as Sophie. Well, she nailed it! She showed "consistent word identification" meaning she is perceiving speech very well with her CIs.

As far as expressive language, Sophie's vocabulary is continuing to grow more each day. Our list - wrinkled, stained, and hanging on the fridge - is getting longer and longer. (I think it may be time to make an electronic version!) At last count, Sophie is saying 63 words and phrases. Take that, hearing loss! A couple of my new favorites are "Aunt Andi", pronounced "Ah-ah-tee" and "please". "Please" is the cutest, coupled by the sweet mispronunciation: "pweeeshhh", and the toothy grin that Sophie is forced to make at the end of the word:

Anyway, we are ready for school! It seems like it was just yesterday that I was pregnant with Sophie and we were busy planning for her arrival. Everything had to be absolutely perfect, from the nursery to childcare. We wanted in-home childcare for when Sophie was an infant and would explore different centers for a more structered setting by the time she was one and a half or two. We interviewed several people and found the perfect sitter in the beginning. Here we are today, at the point where we would begin looking at centers, and Sophie is entering a program at an oral deaf school. And it's a great one at that - a place families move from across the country to go to. Part of me is sad - sad that our child is deaf and has special needs that require her to go to a special school. Part of me wants to laugh - laugh at the plan that Jared and I had when we were naive and expecting our life to go the way we wanted. And then another part of me (and a pretty big one) feels incredibly lucky - lucky that Sophie gets to attend this AMAZING school with all of the AMAZING teachers and professionals that we would never have met if our life had gone according to plan.

Have I mentioned yet that we are excited?!

Tantrums...?!

My sweet angel,

Tonight marked another wonderful milestone in your development - your first full-on temper tantrum!

That's right - wailing, arching, hitting, kicking - the works. You became quite upset after dinner when I wouldn't let you take your cloth baby doll into the bath tub with you.

Yikes!

I'm now a little scared for what is still to come. Especially in about 15 years...!

At least you seemed to get over it pretty quickly:

I love you, Mom

Hard questions, no real answers

Since discovering Sophie's hearing loss is genetic, I haven't spent too much time thinking about it. It has been in the back of my mind, a small worry just waiting to take over. Our ENT initially discussed Sophie's test results with us in January, but he was unsure because Sophie tested positive for an altered copy of two genes that cause hearing loss (Connexin 26 and 30). Anyway, we went to see a geneticist earlier this week to get a better understanding and make sure we have all of the facts straight.

Even though there is no history of deafness in our families, Jared and I each inherited an "altered" copy of a gene that causes hearing loss. 1 in 33 people carry this altered gene. (Our genetic counselor prefers to use the word altered over flawed or mutated, which I thought was hilarious, but obviously PC.) This means that our siblings each have a 50% chance of carrying the same altered gene and potentially passing it on. If or when we have future children, there is a 25% chance they will have hearing loss. If any of you previously read this post, it gives the possible scenarios. Since Sophie received two altered copies from us, if she has a child with a person who is also a carrier, there will be a 50% chance her child will have hearing loss. If she has a child with a person who also has hearing loss caused by Connexin, her child will have hearing loss as well.

We had done our research ahead of time and there were really no surprises from our visit. I'm glad we went and were able to talk to an expert, though. I feel much better having our ideas confirmed.

Since this visit, I can't seem to shake the aforementioned worry. I feel very indifferent and keep looking at things from a different perspective. We have always wanted more than one child, and still do. But now I can't seem to stop thinking about all of the "what ifs?". Although Sophie is doing great and I feel like we could do it again, she is too young to even know she is deaf. What is going to happen when she does? How hard is it going to be for her? Could I bring another child into this world knowing that they too may face this struggle? Is it selfish to want another child? Then there are times that I just cannot imagine Sophie NOT being a big sister. She is so sweet and caring already and I want her to have a sibling to share her life with.

I know that these questions cannot be answered because there are no real answers to be found.  Life just happens and you have to adjust and learn the best that you can. I surely never thought I would be faced with something this heavy so early in my life, but here I am. And I know that there are families out there that have harder struggles, heavier hearts, and the weight of the world on their shoulders. Even though I worry about what our future may hold, things could be so much worse and I am thankful each day for what we have been blessed with. I know that we will make the right decision for our family when that time comes - I'm just not quite sure what it is yet.

Elbows!

Isn't this the sweetest thing ever??? I love this girl!