The 'Process'

My cousin has a friend who has a new baby that has been diagnosed with profound hearing loss. She told me about it a get-together we were at last night and I couldn't stop thinking about this family; I felt a really strong need to reach out to them so I called, got their number and called them. I had a wonderful conversation with the dad and I look forward to talking with the mother soon. Connecting with another parent who has been there, done that, and got the t-shirt helps so much when you are facing issues with your child. Talking to someone else who 'just gets it' without having to explain all the acronyms and the reason for all the tests and why they look for all the seeming unrelated things that might actually be related to hearing loss... yeah, it helps

After talking with this totally awesome dad (hey, he was at home on a Saturday afternoon by himself with the kids in the middle of changing a poopy diaper when I called! That's pretty awesome in my book! LOL!), it caused me to reflect on our own journey and how I got to where I am in relation to the girls' hearing loss. I realized that I had blogged mostly about the process but not about the 'process'. What I mean is, I have talked about the appointments and tests and medical stuff - the physical process we have been going through - but I haven't really talked with anyone about the emotional process you take as a parent with a child diagnosed with hearing loss.

I think I'm doing okay on the outside, at least I hope I do, I feel like I hold it together pretty good for the most part but that doesn't mean there hasn't been bad days; days when I want to stomp my feet and shake my fist and say "Why me? Why my children? Why US!?!?" So just a glimpse into some of the millions of things floating around in the mind and heart of a mom with two children with hearing loss:

Sheer terror - At the initial diagnosis, hearing the words "your child has severe hearing loss" really initiates almost a fight-or-flight response. You don't know what to do, you don't hear most of the words the professional tells you after that, you certainly don't know what questions to ask, and since neither the fight or flight response is acceptable in a medical office from modern human beings, your brains does the next best thing and just goes into a kind of shut-down surreal sense of other-world-ness. It's my opinion that this is your body's way of removing you from a situation that you haven't figured out how to handle yet since you, as a modern human being, have sufficiently suppressed the urge to kick the audiologist in the shins or run screaming from the office.

Depression - I go into kind of a survival mode when I am overwhelmed and depressed, doing the bare minimum to keep the family and household going. I am told that individuals and parents with children of hearing loss go through a grieving process and it is normal to feel all the same emotions as a person who has lost a loved one. It makes sense because loosing something as important as a basic sensory function is a pretty big loss!

Guilt - Why didn't I catch it sooner? I thought something was wrong earlier, why didn't I push for a more thorough hearing evaluation then? I mean I live with hearing loss, I should have known!!

Frustration - Why won't anyone listen to me? I knew something was wrong! Why didn't the doctor say "unreliable" on that first screen instead of "Oh, she just lost interest". I mean I LIVE with hearing loss, I KNOW what I am talking about!!

Guilt(Part 2) - As the parent, is there something I did? Could I have prevented it? Was it something I took/didn't take, ate/didn't eat, breathed, whatever, while I was pregnant? Was it my genes? This is true for me especially since I have hearing loss myself, I feel especially responsible for the girls' loss.


Frustration (Part 2) - Why can't I get an appointment sooner? Why can't I get straight answers from insurance? Why won't insurance do what they say they are going to do? Why does it take so long to get test results? Why can't someone tell my why this happened and what to expect? And where to we go from here?

Relief - It's only hearing loss, it could be so much worse. There are so many parents facing much worse circumstances.

Guilt (Part 3) - Why am I so bent out of shape; it's 'only' hearing loss? It could be so much worse! I should be thankful.

Vanity - Will people still think I have a beautiful baby when she gets her hearing aids? Will they see her gorgeous blue eyes or will they only see the aids on the side of her head? Will people make assumptions about her that aren't true? Will they see past their aids and see what wonderful, beautiful children they are?

Fear - Will they be okay? Will they learn to talk 'normal'? Will kids make fun of them for being different? Will they have a problem with school? What do we do when we go to the pool?

Now I know there is a while lot more, this list just touches the tip of the iceberg. A big one that I left off was "denial". I honestly didn't spend a lot of time with this emotion, I really think I knew in my heart long enough before I could get anyone else to take it seriously that denial was pretty much beyond my capability. My husband, on the other hand, lived here for quite a while. I think that is somewhat normal for dad's though. It seems that mom's have that sense, they know something isn't right, and when their fears are confirmed, they go into hyper-mothering mode and want to comfort, research, prepare, and reach out and connect with other mom's facing the same thing. Dad's just want everything to be right. Dad's fix things and if it isn't fixable by Dad then they don't know what to do with it, so they deny anything is broken. (I'm not saying kids with hearing loss are broken.)

So, I realize this post has focus a lot on the negatives. There has been a lot of surprisingly positive moments on this journey as well. Happy, joyful times that are so hard to explain to someone outside of the world of hearing loss; the look of joy on Faith's face when she really heard for the first time, hearing a string of consonant babbles for the first time, finding out insurance would pay for much more than we thought! But my intent was to be real, and I think a lot of times people only put out the 'sunshine and roses'. I think it is okay to go through some negative emotions as long as I don't get too hung up on them and stay there. Recognize them, deal with them, then I gotta pull up my big girl panties and get on with life! My family needs me. My kids need me. They need to hear me tell them that they are fearfully and wonderfully made by a Creator that doesn't make mistakes. He has a plan bigger than ours and he knows the opportunities that lay ahead for my children, hearing or not. All we can do is trust in that.

Foster knows Laminin

Foster came in to the kitchen Monday morning, it was Memorial Day so there was no school and I let the kids sleep until they woke up. So in he comes and the first thing out of his mouth this morning was "Mom, there's something on the computer I have to show you!" No "good morning" or "what's for breakfast?", just that he had to show me a video he saw a school. So he goes into the computer and starts to looking for the video he saw. Well, I ask a few questions and he said his teacher showed them (so I breathed a sigh of relief, these days you never know what kids will come across on the internet) and it was on "God Tube" (another sigh of relief!). I pulled up www.godtube.com and then we set about looking for his video. I asked what it was about and he said "laminin". Well, I have a biology background and I wasn't even sure what laminin was, but he told me it was a protien so I typed "laminin" into the search field on God Tube. Several vidoes pop up, a couple of them showing a man with the title "Louie Giglio - Laminin" beside the photo.

"That's it, Louie Giglio, that's the video I want you to see!" Foster said excitedly!

So I played the video and listened. The more Louie talked the more amazed I became. Yes, laminin is awesome, but what was even more awesome to me was that my seven-year-old son saw this video, understood the significance, remembered the scientific name of a protien molecule, remembered the name of the preacher, and thought about it days later and wanted to share it with me! I truly believe God is preparing Foster for a wonderful future, he has a heart and understanding of the things of God beyond his years.

I hope you are encouraged by Mr. Giglio's words as much as Foster and I were!



Louie Giglio - Laminin

On a Scrap Related Note... GASC time!

I can't believe it's almost June! But I am excited because June means it's time for the Great American Scrapbook Convention held annually at the Arlington Convention Center. This year the show runs June 5-7 and if you are a scrapbooker but have never attended, it really is worth it! This year I am really looking forward to GASC for another reason - it marks my return to the teaching circuit after taking close to a year off due to Ella's arrival. I have missed teaching and the scrapbook community greatly! I would love to see some of y'all in my classes, too! Here's the Rusty Pickle line-up for GASC 2008:

Princess Layout

Jumbo Cards

Love, Love, Love Mini Album

All Boy Layout

Happy Mother's Day

It's Mother's Day! I cherish motherhood. It sounds cliche but it is the hardest job I have every done but also the most rewarding by far. All those things you hear people say before you become a parent take on new meaning when you start experiencing them yourself.

I am settling in to my new place here in Holland. (If you haven't ever read the story "Welcome to Holland" written by the mother of a child with special needs, you should google it. It is another one of those things that take on new meaning when you experience it for yourself.) I am beginning to feel like audi appointments, hearing aid fittings, special educational meetings and other doctors appointments are just a routine part of life. Honestly, it's not so bad. I do know there are many parents facing much scarier, more dibilitating diagnosis with their children. My heart goes out to them. It reminds me of the photograph of my own parents with my older brother just a few weeks before his 3rd birthday. When I was a child, I never understood the strange look of forced smiles on my parents' faces as my brother smiled happily standing between them in short pants and knee sock (which to this day, he blames for ruining his life! So I guess Mom wasn't completely perfect, but he did look cute!). When I became a parent myself and understood the context of the photograph, I was amazed that my parents were able to smile at all; you see, the picture was taken on the eve of my brother's heart surgery. Since I was 6 years younger, I only knew of that time from stories of how my brother gave the nurses a fit in the hospital and his scar running around his chest. My mother never talked about how scared she must have been, but after becoming a mother myself and looking into her eyes in that photograph, the eyes of a young mother about to hand over her tiny only child into the hands of a heart surgeron, she never had to explain.

After doing much research and finding 'professional' after 'professional' recommend things like 'language-rich environments' and programs that stress important sounding ideas such as 'language models' and focus on 'vocabulary enrichment activites', 'narrating daily activities' and more. Then reading the descriptions of intentional activities designed to help HOH kids develop language, I realized, "These are things my mother does with my children naturally. Isn't this how kids are supposed to be raised?" I had told my mom one time, even before we found out about the girls' hearing loss, that if she could bottle and sell her style of child care, she could make a fortune! My brother and I were both early readers; I was a regular Reader's Digest fan before I even started school. So was Foster; at the end of kindergarten he tested as reading on a 5th grade reading level and has always been well advanced in language acquisition, both receptive and expressive. I credit most of that to the way my mother cares for him. I hesitate to say 'teach' because I don't want you to think it is a set aside time of planned activity. She just naturally realtes to her grandchildren so that they learn language in everything they do. And beyond that, she does it in ways that they think are fun! The 'narration of daily activities' is something that was always a part of my life and now my children's lives as well. Her imaginative stories are so good that for years I have been encouraging her to write children's books. I always thought it was my mom and her silly stories and fun chatter; who would have thunk...? Here's a tip though: if you ever pass a cemetary with my mom and there is an elderly man sitting in a lawn chair, make a quick comment about the weather or the pature on the other side of the road, anything really, trust me on this one! But seriously, I believe that the reason Faith is doing so well inspite of her hearing loss is that she has been immersed in a sort of informal verbal therapy since she was born, without us even realizing it! All thanks to my mom!

Mom, I can not begin to thank you enough for the gifts you have given my children - especially the gift of language! You have helped me be a better mom, too! Thank you for all you do!

HAPPY MOTHER'S DAY!!