My Letter to the Pre-Special Needs Mommy Me

A good friend of mine posted this video for parents of special needs kids on my facebook wall recently.  As I watched it, I was struck by a couple of things.  First was the man at 1:14.  His image and sign only flashes on the screen for a second or two, but it's very impactful.  It says, "Praying to the same God/Savior who put you in this position is kind of futile...no?".  This simple phrase pierced me to the soul because I see it just the opposite and I can feel that man's hurt in just that one sentence. It's like he's saying he feels abandoned by God while trying to endure the hardest trial life has ever dealt him.  If one can't find peace and solace and hope in God, any God, imagine that person's sense of helplessness.  For me, it's just the opposite.  I find my strength to go forward, my hope for the future, my understanding that my reward comes later.  I find these things in my faith.  I'm blessed to have been raised in a faith that has taught me that I am a literal daughter of Heavenly Father and that He knows me better than anyone else in the world does.  He blesses us with trials he knows we can overcome if we let Him help us.  How lost I would feel without religion in my life.  It gives all of these struggles a purpose.   My heart breaks for the man holding that sign because I can just hear the despair, feelings of being lost, anger, hurt, and so much more in those words.  And that makes me sad for him.

The second thing I thought about is what I would tell my pre-special needs Mommy self if I could.  It's weighed on my mind for a day or so now, so I figured I'd write myself a letter. 

Dear New Mom Aimee:

I see you sitting there holding CJ at about seven weeks old.  I can hear the thoughts in your mind as they whirl around. I can hear the frustrations, the fear, the worry in your mind. I know you blame yourself for passing on this gene to him.  I can fast forward a few years and recognize these same thoughts and fears spinning through your mind as you start the whole scary process over again with Liam.  I know things that will happen that you can never imagine.  There are so many things I want to tell you, not that you'll ever understand them until after the fact, but they are important words nonetheless, and they need to be uttered.

First and foremost, you WILL survive this.  In fact, your whole family will survive.  You will learn to help your boys help themselves. You have all the tools in you to lead your husband and your other children in the right direction.  The thing is that you don't know the tools are in you. You MUST ask for help.  Beg for help even.  I know asking for help is like having your toenails removed and far worse than any other fate you can imagine.  That's something about you that won't change, but the only way to learn to find the tools within you and how to use them is to allow help.  Allow help from specialists and teachers who can teach you how to teach your children. Allow help from friends who are desperate to do something, anything. Allow help from your husband. Don't push him away and insist that you can do it all yourself. It will leave you exhausted and him feeling like less of a man.  Allow people who love you to be shoulders to cry on, to bring meals, to joke with you when you just can't do it anymore. 

Allow God in.  I know you are so angry with him right now.  I know you won't admit to your anger for a long time because you feel so guilty being angry at God, but He knows. And He understands. And He cries with you at night when you don't think anyone else hears you.  He knows why you're mad and He hates to see you, His child, hurting.  He has his hand out to you every single day. Each day that you push Him away and insist on fighting this battle alone, He sends you angels and tender mercies.  You may not see it right now, but you will.  Eventually you will come to see things differently. You will understand that it's not so much that He has given you this trial in your life as it is that He has given these boys you. He gave your sons deafness, extreme ADHD, health problems no one else can understand, and struggles that are just "not fair".  But, to help them with these hardships, He gave them YOU. You are their tool, their strength, their tender mercy, and their angel.  It will take you time to understand this, but once you do, you will rise to the occasion.

You will cry over these children.  You don't like to show emotion, so you won't cry much in the beginning. You'll be too busy searching for answers and resources, but the moments will come that you will cry.  When you see other kids not wanting to play with them, it will cut you like a knife.  When you watch them work ten times as hard as everyone else to accomplish the same task, you will ache for them.  I'm not going to lie. It's going to hurt. A lot.  You will occasionally ask someone to be brutally honest about things, and they will. Then you'll regret having asked. 

You will rejoice over these children.  Remember the day one of the specialists told you CJ would never speak understandably and would probably only read at about a fourth grade level by the time he graduates?  She was wrong.  She was so very wrong. You will find every resource imaginable for him and for Liam and they will speak.  In fact, CJ will speak so clearly that he gets kicked out of speech classes.  And reading? It will be all he wants to do all day long. Non-fiction will be his favorite and he will crave books and more books, especially encyclopedias, almanacs, world record books, and Ripley's books.  He will sit around the table and regale you with all the useless facts he learns.  Be sure to ask him about the salivary properties of leeches. Fascinating!  Oh! And have plenty of art supplies in the house.  He loves art.  He emotes through art and takes great pride in creating beauty. 

Liam will have the most struggles in his early childhood. Between his mystery lung disease and ADHD and hearing loss and all the crazy medical things that happen, he will struggle. He will be the greatest test of your patience. You will exhaust yourself cleaning his walls, you will go broke replacing all the things he dumps or destroys, you will grow weary of all the late nights with him, you will beat yourself up over your choices when people who just don't "get it" question you.  Remind yourself often that those feelings of frustration and exhaustion are valid and fair.  You don't have to be perfect all the time.  Also, be sure you savor the amazing moments. He will have a sense of humor like no one you've ever met and he will relish every new thing he encounters.  He has so much excitement about life in his pinky finger let alone his whole body. 

Quit caring what others think or say.  Let them wear their favorite super hero costume to school. Let them carry all twenty of those books everywhere they go.  People will occasionally be insensitive and say stupid things. Remember that they don't get to live your life day to day. They don't have the opportunity to see how far these kids have come.  You won't realize it right away, maybe not ever even, but people will stand back and be a little bit in awe of what you accomplish. They will be drawn to your boys and they will look to you to be an example. You will, of course, fail at being a good example a lot of the time.  But, sometimes you will have moments of brilliance.  Embrace those moments. 

Keep learning. Keep asking questions.  Lots of questions. Keep opening your mouth and sharing what you know. You will feel really stupid in the beginning. (Not that I have to tell you this. You already know.)  Little by little, your knowledge and understanding will grow. This isn't just for your benefit. The Lord will bless you with this understanding for you to share it. 

Forgive yourself. So, you're the one that carried the gene that caused their deafness. Who cares?  It's not something you can control. Really, if you'd known they'd be deaf, would you have opted not to create them?  We both know the answer to that.  It will take you many, many years to get over this guilt.  In fact, even as I write this, I still cringe every time a well-meaning person asks about how they lost their hearing or a doctor suggests genetic testing.  It's a deeply-buried guilt, but it's there and it will rear its head now and then.  At some point, I hope you allow yourself to move past it. 

You will embrace this. Quickly. As you sit there holding those new baby boys just learning of their disabilities, you are completely overwhelmed by it all, but that won't last long. You will find a love within you that you had no idea was there. You will be a passionate voice for everyone with special needs. You will be a good mom.  Despite your fears, you WILL be a good mom. 

It's okay to get frustrated. It's okay to sit down and just cry now and then. It's okay to feel defeated. It's okay to admit you're human. You'd like to think you're SuperMom, but that doesn't make you any less human. 

I guess that's it. Ask me again to write this letter in five, ten, twenty years, and I imagine it will be much deeper and quite a bit longer.  I'm also pretty sure it will contain more joy and love than anything I can imagine even right now.  As I sit here watching all six children around me happily playing and just enjoying life and comfortable with who they are, I'm quite positive joy would be a part of any future letter I'd write to my former self. 

Love,
Mee

Liam's Left Ear Implant Is Scheduled-After Agonizing Over Choices

I've tried to write this post a dozen times over the past couple of weeks, but just couldn't do it. Every time I'd sit down to even think about it, I'd just start to cry.  Once we finally chose which doctor to go to for Liam's implant, things became much easier. It's kind of funny that the process of choosing the doctor was so much more agonizing than deciding to implant.  I think that's because we've known all along that he'd need to be implanted, so we were resigned to that fact already.

As many will remember, Liam had some complications with his first implant.  Part of the device ended up in his internal auditory canal due to his very unusual anatomy, and we had to explant the device and then re-implant it.  It was hard watching our little guy struggle with the surgery once, but twice on the same ear is a lot for anyone.  Because his anatomy is so screwy, it was decided that we might be better to find a doctor with a little more experience in unusual inner ear implants.

The school Liam attends highly recommended a doctor in NYC.  He has AMAZING credentials, the skills to implant kids like Liam, and people only praise him for his work.  The problem?  I just could never feel right about taking Liam there.  We dragged our feet for months on it because things just didn't feel right, but we couldn't tell you why. Finally I agreed to have his CT scans sent to the doctor for him to look over.  They were sent, but then sat in a mail room at the hospital for a long time before actually getting to the doctor.  Once he got a chance to look at them, he was able to have some communication with our audiologist here.  After he had spent time talking with her, she contacted us to let us know he was willing to do the surgery and gave us all the contact information to start the process.

This is where I started to feel even more sick.  I tried repeatedly to contact him leaving lots of messages and never getting a response. I finally reached a person, and he had no idea what I was talking about.  I called our audiologist and let her know I was already very concerned about taking Liam to a place that was so big that even phone messages didn't get through.  It's a big deal to me. If you're to busy to return a phone call, you're too busy for my kid. She contacted the doctor and suggested I try e-mailing him directly.  I did this, and finally got a response from him, but it was just a couple of sentences that he put directly inside my own e-mail and then just highlighted his answers.  It just wasn't quite the kind of communication I was looking for. I felt like I needed this doctor to actually pick up a phone and talk to me and really tell me what he was planning for my child.

Because I wasn't feeling 100% on board with the New York doctor, I opted to reach out to our first surgeon who had implanted CJ. He's back in Dallas where we started out and knows our family and our boys' history well. I explained what was going on, how I was feeling, and asked him his opinion of the situation. Specifically, I asked him if HE could do the surgery and have the same success as the NY doctor.  He responded quickly and openly. We had a LOT of back and forth e-mails during which he stated that he felt that, with a different electrode array, he could get 2/3 of the electrodes in, but he wasn't sure how many we could actually use. We wouldn't know that part until AFTER the initial stimulation of the device.

So, I was faced with an agonizing decision. I could take him to New York City to a doctor who I couldn't really communicate with, but who felt that he could get ALL the electrodes in and that they'd all be usable.  The New York doctor is out of network with our insurance and would cost us about $10 by the time Liam and I traveled there and got lodging, etc.  My other choice was to take him to Dallas to the doctor I felt most comfortable with, but who felt that 2/3 of the electrodes was a generous ambition.  The Dallas doctor is in network and the cost to us will about about $3,000 after we do lodging and travel.  This was for some reason, an agonizing choice to have to make. I'd feel good about taking him to Dallas and then talk to our audiologist who would strongly encourage the New York doctor for very valid reasons.

Byron and I put a good amount of prayer into it (though sometimes I feel like we could even put more prayer into it), and I felt like I needed to talk to one more person. I called our current local surgeon for his opinion.  He'd be the one to do post-surgical care for Liam and tend to any unexpected problems that should arise, so it makes sense to see what he feels.  He agreed that the choice would be hard.  If money were no concern, he'd send us to New York. Since money matters, he has only amazing things to say about our Dallas doctor. Turns out he's met Dr. Peters and really likes him and his style.  He couldn't give a real suggestion, but he said some things that I really needed to hear. And with that, the choice was made.  We are taking Liam to Dallas this summer for his second cochlear implant to be done by Dr. Robert Peters.

The sick feeling is gone. The tears and worry are gone. They're replaced with excitement and a feeling of great anticipation. I consider these feelings to be an answer to prayer and the much needed guidance I was seeking through prayer.  And so now we move forward.

Little Miracles



One of my favorite parts of having kiddos with some special needs is that things that would just be ho-hum suddenly turn into little miracles.  In the past couple of months, I've seen lots of little miracles with my boys. I'm not sure what to attribute them to, but I will say that the time correlates with when I started using the doTERRA oils my friend, Mindy, sent to me.  Things just got easier once we started using them.

CJ and Liam are where we've seen the most marked improvement, but Byron will often call me at work and ask me which of the oils I gave him to keep in his desk he needs for this or that. His anxiety is down tremendously even though his work load is up. He's sleeping at night, and waking feeling more rested. The list goes on.  Anyway, I digress. I wanted to talk about CJ and Liam.

CJ has gotten so that he asks for these silly oils by name. He got hold of my doTERRA magazine and read it cover to cover one night. He studied it in depth and created his own wish list for which oils he wants for himself.  He really likes the inTune because he doesn't have homework when he uses it. I think that's probably because he can focus on work and get it all done in school.  He also loves the Balance and Citrus Bliss, both of which help with stress and worry.  Balance is calming for him, and I see a difference in him when I apply it as his ADHD meds are wearing off.  In the evening, I give him some lavender or Serenity and it does help him sleep. It doesn't resolve all his sleep issues, but things are certainly better.

Liam has completely stopped with several of his sensory seeking behaviors.  In fact, things are so good that there hasn't been a single Poocasso incident in nearly two months...maybe more!  We've been able to clean up his room, repaint his walls, and make his room into his own fun little sanctuary. I still need to put the color paint on there (colonial blue!!), but that should happen sometime next week.  He isn't running through the house systematically dumping everything in sight. HE IS EATING HIS MEALS!  I sometimes still have to put a hand on his lap to help remind him to sit still, but he's eating foods he wouldn't even consider before.  He is going to sleep and staying asleep until it's actually time to wake up.  The biggest moment with him came yesterday as the missionaries were sitting here. One elder said, "What's different with Liam? He's so different from when I first met him a few months ago? He's following directions and I can understand so much of what he says." That missionary was exactly right.  Liam's words can be understood often without even being in context and by people who don't know him very well.  My friend, Anne Marie, even understood him over the phone!! This is huge!! Turns out this little dude has a sense of humor and loves to crack little jokes.  I love these miracles I'm seeing with my boys.

The oils have done other things, too.  So far, I've seen all of the following things in my own experience:

• Strep throat wiped out in minutes...at least the pain and fever
• Toothache totally gone
• Teeth whitened
• No more witching hour when I remember to keep the diffuser on during difficult times of the day
• The dog had an accident on the floor and I mixed some lemon with baking soda. The odor was gone and the house smelled GREAT!
• All sharpie and other writing came right off the walls
• Lavender applied to a boiling water burn pulled the pain out instantly
• Headaches totally gone in minutes
• Muscle aches and pains drastically minimized
• Asthma attacks are almost non-existent
• The only illness any of us got was when Rachel got strep. I attacked that with onGuard toothpaste and it went away almost instantly.  Schools and church have been germ cesspools, but we've avoided it. (knocking loudly on wood)
• A friend had a daughter with warts that they'd been fighting for a long time, and the warts were gone within ten days of applying the oils
• Byron says he's more relaxed
• Sore throats disappearing quickly

There's more, but I can't remember it all. I'm just amazed by what this stuff has done for my family and feeling very blessed to have it in our lives.  I love how little miracles just happen all the time around us.

Just Plain Happy

 

 

My children amaze me every day. Whether it's some stunt they've pulled that's so insane that no one else on the planet could have thought it up, or coming up with some deep thought that far surpasses my brain's capacity, or...well, whatever it is that kids come up with, I'm always amazed.

Like his siblings, Liam never disappoints in the amazing accomplishments category.  It seems in the past couple of months, he's managed to do things that I never imagined would be in his immediate future.  The other day, we were at the park. There is a slide there that has a series of tubes that turn as you go down it so that they can propel you down. Liam came up to me with tears in his eyes and showed me his finger. He looked me in the eye and said, "Hurts. The slide did it."  I immediately understood what he was trying to tell me and was able to console him before sending him off giggling into the crowd of other small children destined for playground injuries. For any other kid, this scenario would be a typical day at the park. Kid goes to the park. Kid gets hurt at the park. Kid tell Mommy about his injury. Mommy kisses it. Kid runs off playing.  In Liam's case, though, one of those steps is usually missed. Usually the part where he verbally tells me what is wrong never happens. Usually I have to guess and hope I get it right.  The fact that Liam recognized that he was hurt and could tell me that AND how he got hurt is huge. 

Reading. Liam is trying to read. I taught him how to sound out letters and he's doing it. Obviously it has to be fairly simple words, but he's getting the concept faster than I can come up with new words. He's memorizing them almost instantly, so I'm constantly searching for new words to challenge him with.  The fact that his school has taught him all the letters and the sounds they make has made my job of teaching him to actually make words that much easier. The fact that he understands the language needed to explain it to him is truly miraculous.

NO MORE POOCASSO!!!!!  This is huge for Liam. We used repetition, pictures, songs, dances, everything you can imagine and FINALLY Liam has his sensory issues under control enough that he is no longer doing disgusting things in his room.  His walls have been stripped, everything cleaned and perfected, and all that's left to do in there is a final coat of lovely, clean colonial blue paint.  He's so delighted with his new wonderful space and we're all grateful that he's past that particularly yucky phase of his life.

Lastly, this kid is just plain happy.  There's no other more appropriate word to describe him. Even though his language is limited, he just lights up a room when he walks in. He's delighted with life and every single detail of it. He will knock you over with a hug when you walk in the door, giggle in spite of himself at everything new, find joy in every toy, and give more love than anyone could ever imagine possible for such a little person.  Liam is joy.  Pure and simple.

CJ's Blessing Day-Deafness is Their Gift

Every now and then, someone will see CJ and Liam with their hearing devices and make a sad face or say something well intended like, "Oh, I'm so sorry. It must be so hard." Well, sometimes it is hard. It's challenging to say the least, but it's not something to be sorry about. It's the cards we were dealt as a family, and we're handling them just fine.

That said, I wanted to share a story that I've shared before with others, though never really in writing.  It sort of explains why their hearing loss is so "okay" for me, why I don't find it to be some crushing death sentence.

CJ's hearing loss was confirmed when he was seven weeks old.  I'm pretty sure the audiologist hadn't ever told another set of parents that their perfect baby was Deaf because she told us to come back and retest in a few weeks because maybe his brain wasn't fully developed. If I'd known then what I know now, I'd have been worried about far more than just hearing loss upon being told that.  Still, we were clinging to that possibility and opted not to tell a lot of people what was happening with CJ's hearing. I told some of the girls I worked with and a couple of close friends, but that was really it.

CJ's blessing day was just two weeks after the day we'd heard about his hearing loss confirmation. It was a sort of somber morning getting him ready for church that day and I remember that both Byron and I were at a bit of a loss as to what to say.  In our hearts, I know we were both praying for all we were worth that he'd be given his hearing. 

We sat in the back row near some friends whom we hadn't yet told about his hearing loss.  I remember looking at them as they sat staring at my sweet baby telling me how beautiful he was. Just the week prior, my friend, Janna, had held him all during church and just adored him as this perfect little baby. I hadn't told her about his hearing, either.

It felt like an eternity before Byron was asked to bring CJ forward for his blessing.  My heart was pounding and I couldn't hold the tears back as I sat there pleading with God in my heart to please, please, please give this boy his hearing. How could he ever live a "normal" life without one of his major senses?? How on earth could a young mom like me be a good mother to a child with hearing loss?  What could I have done that would ever be so bad that the Lord would take my son's hearing??? 

As the blessing began, I remember finding a way to feel calm and just listen to the words.  First, he was given his name on the records of the church and then it came, "Carter, I bless you that you may never truly hear the words of your fellow beings."  It was like a knife to my heart.  WHAT?!!?  How could he be BLESSED with hearing loss?!?!  I looked up and saw the stunned faces of those in the congregation as they started to quickly realize what had just happened and what was really being said. This baby is Deaf. He doesn't hear. His ears don't function. I felt like all eyes were on me, feeling sorry for me, pitying me. It felt like time had stopped and I was here in this twilight zone space lost and unsure of what to do or where to go. After that eons-long split second, the next sentence came. "Instead, Carter, I bless you with ears tuned in to the Spirit of your Heavenly Father. I bless you with an ability to know and understand the needs of those around you."  I didn't understand at the time what it meant, but I knew I was heartbroken. I was still stuck on the first part, the part that said he wouldn't really ever hear me. 

After his blessing, Janna came up to me and hugged me and said, "I held him all last week and never knew.  He is still so beautiful and so perfect."  She didn't know it then and may not even know it to this day, but I clung to those words.  I needed someone other than myself to see my precious baby as perfect because, to me, he was perfect.  He still is. 

It took me a long time to come around and really understand and embrace what CJ's blessing really meant. It wasn't until he was about three years old and we started to see something in CJ that we've never seen in any other person.  He seemed to have this innate sense about other people. He'd walk up to people at church and randomly hug them, or sit on their laps, or give them the most sincere smile anyone could ever dream of.  That's how he came to know and love his Jim.  He just walked up to Jim one day and plunked himself on his lap and asked to play with his palm pilot and a bond was instantly formed.  The thing is that the people he'd choose to love on were the people who were silently struggling with something of their own. Sometimes he was the only person who could melt the heart of that one person who was just generally "grumpy".  It got to where some people would actually be a little disappointed if CJ didn't stop by and sit with them for a few minutes during church services.  They craved whatever "it" is that CJ possesses.

Even with his cochlear implant, CJ doesn't really hear like you and me.  It's a different kind of sound that we won't ever really comprehend, but he does feel and love and empathize deeper and more honestly than anyone I know. He has a direct line and true bond with his Heavenly Father and has a faith to move mountains.  His prayers are so pure and genuine like something I can only dream of ever having.  Indeed he does have ears tuned in to the Spirit of his Heavenly Father and that is a gift beyond compare.

So, this is why I see hearing loss as something other than a curse. Is it challenging? Oh yes.  And difficult sometimes.  And painful to watch my sons struggle to keep up with their "typical" peers.  Even with all that, I wouldn't trade what they have for anything else.  Deafness is their gift. 

Stuff My Deaf Kid Can Do

I've been thinking about this a lot over the past several months. Quite often, someone will see CJ or Liam do something and say, "Wow! I didn't know a Deaf kid could do that".  I love being able to demonstrate that my boys are just like everyone else, but I thought I'd go ahead and put together a couple of lists so people would know for sure what my kids can and can't do. The first list will be the CAN list and the second will be the CAN'T list.  The first list will probably be incomplete.  I'm pretty confident I've got the second list down.

Stuff My Deaf Kid CAN Do

Talk

Walk

Read

Write

Go to school with his peers

Tell a joke

Laugh

Cry

Toilet Train

Swim

Play sports

Ride a bike

Feel emotions

Fall in Love

Reciprocate emotions and feelings of love

Dance

Sing

Be artistic

Enter the school science fair

Share

Understand religion

Go to college

Go to Grad School

Hold a job

Become famous

Be a doctor

Be a garbage man

Be anything he wants

Get married

Have children

Tell stories

Have a favorite flavor ice cream

Have a favorite book

Have a favorite everything

Understand consequences

Talk back

Order food at a restaurant

Dream big

Make big dreams come to life

Get straight A's

Drive their teachers bonkers

Hold the hand of someone who is hurting

Watch movies

Dream of being in movies

Choose his own clothes

Be completely oblivious that his clothes are completely mismatched

Use the computer

Reprogram the computer

Download fart jokes from the computer

Have a best friend

Be a best friend

Read books about every fact under the sun and then feel the need to share those facts with everyone

Study insects in depth

Go to P.E. in cowboy boots

Make Valentine's for someone special

 Become and Eagle scout

Find a talent

Share a talent

Set a good example for others

Set a not so good example for others

Write a book

Have pets

Become President of the United States

Lobby against the President of the United States

Vote

Go to clown school

Join the local fife and drum corp. (CJ just joined and LOVES it)

Drive

Become a DJ

Have chores

Cook

Invent a rocket ship to take them to the moon

Build a tree house

Make a mud pie

Go hunting

Pray

Pretty much everything you and I can do

 

Stuff My Deaf Kid CAN'T Do

Hear

 

 

 

 



I Tried Something New...And it Worked.

Last week, I posted the following on my other blog:

A little over a week ago, a good friend called and asked if she could send me some essential oils to try. She swears they're changing her life and that of her son, who has special needs. I was admittedly skeptical, but this is a VERY good friend and I trust her completely.  Plus, it was a gift, so I had nothing to lose.  I agreed and she placed the order.  She sent me quite a variety of stuff from doTERRA. 

She sent me the physician's kit, the onguard toothpaste, some Frankincense, orange, lemon, slim and sassy, and in focus for CJ and Liam.  Today was day three of trying the oils.  I've been keeping a pretty consistent log of what I've seen and giving my friend all the feedback as I've tried it.  I have to be honest: I'm completely shocked.

Day one: I put some orange in the diffuser and the kids couldn't get enough of it when they came home. They just had to all be around it.  I also put some lavender on their feet at bedtime. Liam was out cold in no time and slept through the night. In fact, he's slept through the night both nights he's had it so far. That's kind of a big deal for him. 

Day Two: I put some peppermint in the diffuser in the morning along with some OnGuard.  I keep the diffuser in the kitchen where all the family comes together.  This way, everyone gets it.  Both yesterday and this morning were amazing mornings!  The kids all got right up, dressed, fed themselves, brushed teeth, packed their bags, and made it to the bus with no crying or fighting. This. Was. HUGE!! Huge I tell you!!!  I also put some of the in focus  and onguard on CJ and Liam's neck and feet. 

When they came home from school, I again had the orange going.  The house was just kind of like usual, but not quite so wild. I'll take that.  I gave them the lavender at bedtime, and haven't seen a huge difference in getting them to go to sleep (except Liam. He is out like a light the past two nights.), but I have noticed that all the kids are sleeping through the night nicely. Plus, like I mentioned, they're getting up on time and moving out the door in a much better way.

Byron and I also starting some drops of slim and sassy in our water. It says to put 4 drops in 8 oz. of water. Not enough water!! We have to do about 1 drop to 20 oz or so of water to choke it down. Awful stuff. I won't lie. I can't say right away if it's working, but I do feel full after it. Plus, I have the energy to actually exercise like I should be. 
 
Day Three: I maintained the same morning routine as yesterday. CJ asked that I not put the oils on his neck because he doesn't like how it feels, so I just did his feet. I did do Liam's neck, but won't do that again because I noticed that it made his skin a little bit red. I asked his teacher, and she said there was no redness an hour later when he arrived at school. Still, I think I may stick with the feet. 

CJ stayed after school for scrapbooking club, which is run by his SLP. I came to pick up, and she pointed out that he managed to stay on task and accomplish a full page today. That's no small task for my sweet CJ.  His ADHD usually gets the best of him by the end of the day, but he managed to stick to his task. Good job, CJ!!  I'm not sure if the in focus is what did it, but I'll keep testing that one.

After school, I did the orange again and noticed something I didn't pick up on yesterday even though it was the same yesterday. Our daily "witching hour" didn't happen. Usually 4:30-6:30pm is utter chaos around here. Kids are whining and arguing over who gets to choose a show on tv, they're bugging me for snacks, fussing over not wanting to do homework, etc.  That didn't happen today or yesterday. In fact, after a long day at school and then scrapbook club, CJ managed to put a good hour and a half into math (his hardest subject) homework without whining one time.  Rachel also got her homework done, and the kids just all played nicely. No fighting or arguing or whining or anything. It was a lovely day. I intend to have that orange stuff going every day as they get off the bus and through our usual witching hour. 

At bedtime, I noticed that the tooth I need work on was hurting again. I went to the website my friend gave me where you find your symptom and it tells you what to do for it and it suggested using the onguard toothpaste. She had given that to me, but I was afraid it would taste like the slim and sassy, so I'd avoided it. I was pleasantly surprised. It just tasted like cinnamon gum. Yummy! I did take two ibuprofen, but after brushing with the toothpaste, the pain is completely gone. 

I found another use for the oils I think, but I found it totally by accident and I want to test my theory first. Plus, it's pretty TMI. 

Anyway, this is a fun experiment and I'm enjoying learning about essential oils and how they work. It's completely new and way outside my comfort zone, so I like that aspect of it.  For more information, you can go to my friend's website where she has lots of essential oils information and take a look around.

I'll keep posting about what I like, don't like, and everything in between.  If nothing else, my house smells lovely. 

Tonight, I posted the following. I'm sharing this all because it is slowly (or actually really kind of quickly) changing the way things are around here. My kids are happier and healthier. 

I mention a couple of posts ago about the essential oils my friend, Mindy, sent to me. I'm an open-minded person, but I was feeling pretty skeptical that these oils could do what she thought they could do. Since she'd sent them to me, though, and I had done some researched that showed it was perfectly safe, I figured I had nothing to lose.  I can't lie. I'm completely shocked.

I've maintained a pretty consistent regimen with the oils, and can add a few new finds to the list.  The first is Byron's sleeping. It's MUCH improved. It usually takes him hours to fall asleep, but now it's just minutes and he is staying asleep.  I've noticed that things that usually cause him to have anxiety aren't having as much of an effect on him anymore. He's just calmer.

I was using the InTune just for CJ and Liam with their ADHD, but Aiden asked me if he could try it.  He noticed enough of a difference that he now wants to use it every day.  I certainly don't argue.  He puts it on his wrists and the bottoms of his feet. Since it's a roll-on, he wants me to get him his own bottle to take to school to roll on when he feels himself getting silly or starting to zone out a bit.  I'll work on that.

In the evening, all the kids right down to Liam present their feet and request some lavender to be placed on them. They sleep so well through the night when I comply.  The really big kicker?  Liam hasn't had a single poocasso moment since I started the oils. Coincidence?  I guess it's possible, but I kind of think it's something else.

Mindy developed a really bad diaper rash. I tried everything for days, ruled out a yeast infection, and still couldn't get it to improve. I was super nervous to try the oils on her because she's so little and her skin is just so sensitive.  After two straight nights of her not being able to sleep because of the pain, I looked up on the doTERRA site what I should do. They suggested melaluca and lavender with a carrier oil, so I opted to mix those two with aquaphor since that would also protect her skin from added moisture. The stuff was on her skin less than three hours before there was a HUGE difference. She has been completely comfortable ever since. 

I can't say enough about the overall mood in the house. As long as I keep those oils diffusing in the kitchen at the key times of day, everyone is able to stay calm and under control.  There really is no more witching hour here...unless I forget to turn on the diffuser. Yikes!

Today Rachel had a fever and a sore throat.  The fever got up to 102.1 so I gave her some peppermint on her feet, and added melaluca, and onguard on her feet and neck.  That didn't do much to bring the fever down, so I gave her one dose of ibuprofen.  Forty minutes later, the fever was a hint lower, but still up at 101.7. I texted Mindy who suggested letting Rachel suck on the onGuard toothpaste.  I gave her a tiny bit to suck on and ran to the gas station for a cherry slushie. I came back less than twenty minutes later to find her happily playing and singing. SINGING!! She had a sore throat twenty minutes prior.  I decided to check her temp. one more time. 97.4!!!  In twenty minutes, it came down to normal and has stayed that way. She's happy as a clam...and cool as a cucumber.

In the chaos of trying to help Rachel, I'd forgotten to turn on the evening oils in the diffuser. Byron had to work late, dinner wasn't ready, and CJ started to have a meltdown over wanting to use the computer. I grabbed the bottle of lavender and just put it under his nose for a little while. Within 30 seconds of just breathing deeply and calmly, the meltdown was done. Over. I'm so impressed!!

Mindy had enrolled me as a doTERRA consultant, but I had no intention of doing it.  With all these great things happening to us, I can only imagine what they're doing for others.  So, I'm in. I'm going to do it. I'm no pro, but I'm working on it.  I'm enjoying what I'm learning, and I'm excited to share what I know about it.  If you have any questions about this stuff, or are wondering if it might be good for you, please feel free to message me at aimeethesupermom@gmail.com or leave a question in the comments. I imagine there will be lots of questions I don't have answers for, but I'll do what I can to look them up. 

This has been such a fun adventure for me. I love it when there is an opportunity to try something new. This time, I think it might be something that will bless our family all the way around.

Even Snowmen Can Be Super Heroes!

One of Liam's favorite things to do at school is artwork. He comes home with piles and piles of masterpieces. I wish I could keep them all, but they don't make storage units big enough for that.  I did make sure I kept this one, though.  I'm pretty sure the batman was created by a rubber stamp, but I'm still giggling that it occurred to Liam to put it on his snowman. It's particularly funny because he has no idea who or what Batman even is.

This Kid Can Party!

A couple of weeks ago, Liam got a birthday party invitation from a little boy in his Sunday school class. This is all new territory for us because Liam has never been invited anywhere with a friend before.  It's never even occurred to me to think that he could handle going to a birthday party.  As he handed me the invitation, the little boy's father asked if I thought Liam would like to go. Without thinking, I blurted out, "Sure! He'd really love that. We'll be there!!" 

I was pretty nervous about it, but had decided that I would go ahead and just stay with Liam at the party. I knew all the other kids' parents would be just dropping them off and leaving, but none of the other kids are Liam.  Liam has been doing so well and really enjoyed the two-week unit they did at school all about birthday parties.  I decided that it wasn't okay to let my worries about him limit his opportunity to go to the party.

I went and chose the little boy a gift that I knew Liam would have chosen if he'd had the chance to go with me and hoped it was a good choice.  Liam found the gift and immediately tried to bust into the packaging. Luckily I caught that in time and was able to put the package away until this afternoon.

I talked to him a little bit before the party and reminded him that it was Jack's birthday, not Liam's.  We talked about singing the song and playing games and he was pretty sure it was going to be so much fun.

We were the last to arrive, which I think was good because Liam was able to take cues from the other kids and sort of follow their lead.  He was more interested in the treasure trove of books on the bookshelf than the games, but I was able to keep him redirected most of the time.

Lunch was chicken nuggets, curly fries, and grapes. It's like the other mom read Liam's mind and put all his favorite treats on one plate for him.  He sat so well at the table, ate his little lunch, didn't spill his chocolate milk, and waited his turn to be served.  I was stunned. He didn't leave the table until he was invited to, which was a HUGE thing for him. 

After lunch, the kids all went downstairs where a few structured games were planned.  Liam was a little bit confused about the concept of the game, but managed to follow the others' lead and caught on.  He wasn't sure what the point was, but stayed on in his seat and did his best.  Even though he was a little bit confused, he did so well respecting the rules.  This was a giant accomplish for him. 

After a few games, it was time for cupcakes.  Liam is not a cupcake eater, which I was prepared for. He politely said thank you for his cupcake and carefully removed the coveted Batman ring from it before licking the icing and slipping it onto his finger. Then he handed me the cupcake. I couldn't let that sucker go to waste, so I made sure it was consumed. 

Then it was time for presents. The other mom told the kids to sit on the couch and that they could hand the birthday boy the gift they'd brought him when their name was called. Liam asked me to let him sit on my lap. Perfect!! That way I figured I could keep him from getting up and running for the gifts. The surprise was that I didn't have to hold him down. He sat happily on my lap and smiled as Jack opened each gift. He was the last one to give his gift, and I was nervous that he'd try to open it himself.  When his name was called, I reminded him which package was his and he ran over to hand it to Jack with a huge grin on his face before leaping back into my lap. Perfect!!! 

Finally it was time to go, and Liam willingly came to the door with me to get his shoes on and tell Jack's mom thank you for having him.  He happily got into the car and had a delightful rest of the day.

I know lots of kids go to birthday parties all the time.  For Liam, though, this is a milestone. This is something I never thought I'd see. From the simple fact that he was invited to his behavior and willingness to make good choices to the sheer joy on his face the whole time, this was a day I hope we don't soon forget.  And the best part?  Next time he gets a party invite, I can say "Yes! This kid CAN party!!".

Liam's Left Ear

Liam on his October field trip to the pumpkin patch with his class

I think I blogged about Liam's right ear when we implanted it last year. He has little or no bony structure around his cochlea, so the implant floated out into the internal auditory canal where it ended up on his vestibular nerve. When that was activated, he lost all control over his body. That meant he needed to be explanted and then re-implanted to try and get the device to stay put. Because he doesn't have full cochleas and there was scarring from the first surgery, Liam only has eight out of twenty-four functioning electrodes in his right ear.  Clear as mud and up to speed with me now?  Okay.  Oh! And for the parent who is considering implanting their own child and is now reading this brief synopsis in complete horror, please note that Liam's anatomy is incredibly rare. I mean, like, freakishly rare.  This is not something that will likely happen to your child. Really.  And, in all honesty, I'd do it all again even knowing what I know. That's how much of a difference the cochlear implant has made in Liam's life. 

Even with only 8 working electrodes, Liam is making progress by leaps and bounds.  He has found his voice and his language and he is using it.  He is still difficult to understand out of context and struggles to be part of conversations that typical children his age can hold, but he is trying. His light bulb is on and he is working toward finding his way.

Because of his success with even a not-so-great implantation, his audiology team has been eager to implant the right ear for at least the last nine months.  We've been holding off for financial reasons and to look at our options.  Our ENT has found a specialist at NYU who has successfully implanted at least 6 other kids with rare anatomy similar (but not quite the same) to Liam's.  This doctor has created a method that will allow him to get all the electrodes in AND hold them in place.  There has also been some speculation that he might be able to explant the currently implanted right ear and redo the implantation to get even more electrodes in there.  The catch? We'd have to go to NYU to do it.

Liam's audiologist has been gently nudging me to just send off his scans and reports to this doctor just to see what he says. Who knows? Maybe he'll look at them and say that our ENT here did about as good a job as can be expected for Liam and tell us to stay put and just do the best we can to implant the left ear. We just don't know.  Well, we say that. The audiologist is pretty confident that this particular specialist will be able to do wonders for our little dude.

I finally relented and had the scan sent.  They tell me the doctor received them last week, and should be calling us to let us know what he's found.  It's a little nerve wracking. I know I want the best for him, but my heart just has all those "what if" questions in there.  Thank goodness for faith that things work out according to a higher plan!

And so we wait. And save our pennies. We're going to need a lot of them to get it done, but the plan is to have this little guy with hearing in both ears well before the end of this year. 

It's Time

I had sort of given up on my blogging after Raelyn's fund raiser (she has had her surgery, by the way, and it was VERY successful!!!!) because...well...I can't think of a reason other than I was lazy. I figured everyone who could possibly get anything out of my blog was my facebook friend already. I realized recently that facebook just isn't enough.  I will never be done Mommying these boys and their siblings. I will never be done on the journey of parenting deaf children.  I will always be on this path with them, always be learning with them, always be advocating for them, always be on the sidelines cheering them on, and always be learning from them. So, I'm back.  It's time really.  CJ and Liam are making progress at record pace, and I need to keep track of it for them and for me.  Sometimes when I feel like we're just not getting anywhere, I look back at old posts and realize just how far we've come. It's not a sprint. It's a marathon, and one I'm proud to be a part of.