Saturday, December 26, 2009

Happy Birthday, Little Guy!!

I can't believe it's already been a full year, but today is indeed Little Guy's first birthday. Every single day I find myself sitting back and thanking a loving Heavenly Father for sending him to us when we really didn't feel ready for another baby. He's the best gift we never knew we wanted.

Little Guy has been far and away our most challenging baby medically and financially. He has challenged us in ways we never could have imagined. As I've documented his progress on this blog over the past year, I've felt so blessed to realize just how resilient he really is. All I can think when it comes to him, is that God must have great plans for him to be having him build such big muscles at such an early age.
So, today will be Little Guy's day. We have a special present for him that will be wrapped in birthday paper, and not Christmas paper. We'll buy him a little cake and a container of banana pudding (his favorite treat) and we'll sing him a traditional birthday tune before letting him make a big mess. And before the day is done, we'll be sure to say a prayer of thanks for letting us have the honor of parenting such a choice spirit.
Happy birthday, Little Guy! We love you!!!!

Thursday, December 17, 2009

Merry Christmas to ME!!

Little Guy is really bad about wearing his hearing aids. In fact, I don't think they've even graced his adorable little ears in nearly two weeks because he has slobbered them to death, and they are back in the shop. Having to wear the canula in his nose has really taken a much higher priority than the hearing aids, and just the canula is a constant battle.

Because we just assumed Little Guy would be like the Beast, we haven't been very good about signing with him like we should. (I know. I can just hear the tomatoes flying at me now.) It's not that we didn't want him to sign. It's just that we got a little too confident in our skills as parents to Deaf children, and got lazy. We neglected the first rule of parenting:" No two kids are alike. No two outcomes will be the same."

We've both been feeling lately that it's time really rev up the sign language skills with him. He will be one the day after Christmas (*sniff*. I'm so not ready for him to grow up yet). By one, we feel like it's time to give him some form of communication. Even if he can't tell us what he wants, he deserves to be able to know what we are saying to him. So, we've started teaching him.

Why do I share all of this? Well, because our efforts are finally being rewarded. I know he really didn't know what he was signing and that he is really just mimicking what he was watching me do. Still, it's so rewarding the first time MY BABY SIGNED MAMA!!!

Thank you, Little Guy!! That was a great Christmas gift.

Thursday, December 10, 2009

Santa's ECI Visit

One of the perks to being part of ECI is that there are the occasional get-together's for ECI families. Truth be told, it only happens about once a year. This year, it was the Christmas party hosted by the local Children's Museum. The thing I love about going to an ECI party is that my kids don't look so "weird" there. They don't stick out like a sore thumb. Most other parents there don't tend to raise a brow at the adorable baby with the nasal canula who is constantly eating his hearing aids, or the very cute two year old with glasses who walks like he's been riding a horse for too long. They "get it" because they have children with similar special needs, too. It was so nice this morning to be able to take a deep breath, set my children free to play, and know they'd be safe and accepted.

Of course, I would be remiss if I didn't also mention a visit from the beloved man in red from the North Pole. Pretty sat and talked to him non-stop, which is ironic because she was in ECI services for speech delays. Apparently ECI worked...perhaps a little bit too well. Snort and Little Guy also enjoyed their visits with him, although I couldn't tell you what they asked him for. I guess that will forever be a secret between them and Santa. I am confident, though, that I will be pulling bits and pieces of Santa's beard out from Little Guy's fingers for the next week.
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Wednesday, November 25, 2009

Well, It Could Always Be Worse

Little Guy has had a rough week. He's been in and out and in and out of the local hospital. Turns out he had a case of C. Difficile, a bulging ear infection, a sore throat, some lung congestion, can't even remember the other thing he had. It's been a long week, but we're home now.

I think the highlight of the week was the trail of very large cockroaches in our original room, which the hospital administration explained to me "must have been brought in by another patient". Ok. Whatever. It's gross.

Really, though. It could have been worse. We could have been in the hospital that we usually have to go to over an hour away. Little Guy's lungs could have been far more infected. We could have been stuck down there for another month. We could have eaten one of those cockroaches. (We'd have to be blind, though. Those suckers were HUGE!!).

We are home now just in time to prepare for and serve Thanksgiving dinner as a family. I'm feeling very blessed for that. I'm feeling blessed having my whole little family together to celebrate the holiday in which we give thanks. I'm thankful for Little Guy and the fact that he smiles and coos and finds joy even in his worst illnesses. I'm thankful for the challenges my children present me with daily. They are there to make me stronger. I'm thankful for my faith. I'm thankful for friends who are willing to help clean my gross house or sit in a hospital room for a few minutes to keep me company or let me shower. I'm thankful for my wonderful amazing husband. He truly is a blessing from a loving Heavenly Father. And, I'm thankful that no matter how bad things are, I always know it could be worse.

Saturday, November 14, 2009

Live Speech Mapping

Big brother, Snort, helping entertain Little Guy.
The computer read-out. The white box represents speech sounds. We want the peaks (showing what he hears) to land within the white box.
Little Guy hanging out during the test.
Chewing the camera cord kept his hands busy and out of the way.
Deanna helped hold the receptor in just the right place for the test. Little Guy looks a little skeptical.
Little Guy loves playing with all the noise toys. This cochlear cowboy hat was his favorite.
A better view of the probe in his ear.
Michele watching the computer so she can use the data to correct his hearing aid programming.
Can you see the tiny wire there? Totally painless, but it does make him giggle with the tickly feeling it gives him.
Holding the receptor in place.
Little Guy can't have another ABR as frequently as we'd like because it's a huge undertaking to work around his breathing issues for the sedation. So, Michele uses live speech mapping to get an idea of how well his hearing aids are helping him.
She inserts tiny wires into his ear behind his hearing aid and then simply begins speaking or making sounds around him. The wires are attached to a computer, which provides us with a read-out of what he is hearing with his aids. From there, we are able to adjust his hearing aids accordingly. It is completely painless as you can see from the pictures, and it's a good alternative to frequent ABR testing.

Thursday, November 12, 2009

Free Stuff For YOU!

My friend, Jami, is amazing at creating beautiful jewelry. I saved Little Guy's first pair of earmolds and had them sent to her. They were so tiny that I knew they'd be the perfect pendants for a necklace. Jami just finished making my necklace, and as soon as I pay for it and get it sent here, you can be sure I'll post pictures.

Why do I tell you this? Well, because Jami is sharing her talents with the rest of the world. She is giving away two pairs of her AMAZING earrings on her blog. Free. And you don't even have to do anything more than tell her what your favorite pair is.

Just go here. Good luck!!!!!

Monday, November 9, 2009

Beautiful Boy

Little Guy took off his canula. So, before putting it back on, I grabbed the camera and enjoyed the photo opportunity. Hope you enjoy it as much as I did.

Sunday, November 8, 2009

Yucky Adhesive

I'm pleased to announce that Little Guy has been home for three full days now, and his sats have remained where they should be. I couldn't be happier about that.

One little problem we keep running into is the adhesive that holds his canula in place. If I use stuff that is really subtle, he pulls it right off and it tears up his skin horribly. The poor kid just bleeds and bleeds. You can see the sore spots on his face in the pictures. The stuff that is more gentle on his skin is just plain ugly. It's just big and clunky and yellowy-looking.

I've included pictures so you can see what I'm talking about. Without adhesive, he takes off his oxygen right away. Surely there is a solution out there somewhere. And, yes. I do realize his canula is a little bit low in these pics. That is yet another battle we fight daily.

Tomorrow, we will go with Ms. Kristi to conquor the challenge of setting his hearing aids to the maximum benefit. It's much easier to do with regular ABR testing. But, since he can't have the sedation for the test, we don't really know how far his hearing loss has progressed.

Such is life, I guess. Two steps forward and one step back. I can't complain. I think I'd be bored any other way.

Friday, November 6, 2009

Home Again

We finally got home yesterday. Just four days in the hospital this time. I'm relieved. I think. Little Guy had some blood work done that was "moderately abnormal" and may indicate some pulmonary hypertension. But, the echocardiogram is okay for now.

We stayed a couple more days after that to try and observe and understand why his sats go lowers. We really have no answers. It does look like maybe he's developing some asthma. It wouldn't be a huge shock since two of his brothers have asthma. But it would be a big frustration. Poor kid.

Sooooo, we are home. And we're thrilled about that. We are cautiously optimistic that all is well. In other very exciting news, all of our kids except Number One got their h1n1 vax's yesterday. Number One has to resolve his egg allergy before he can get the shot, so we're waiting for his blood test to come back.

Ahhhh, the joys of parenthood.

Tuesday, November 3, 2009

And, We're Back at Children's

Here are the latest updates on Little Guy. We are all in good spirits, and keeping fingers crossed that we can make this a brief stay.

Little Guy had an okay night. Sats remained okay, but he was working really hard to breathe by this morning. I was sort of glad that he did that because it showed the hospital staff what I was talking about. (Okay, so I'm just glad that it validated that I'm not crazy. Something really is wrong with him.) They did a deep suction thing on him by putting a tube down his nose and into his throat. He HATED it, but was breathing much better when it was done. He also is finally starting to cough up all this bright green stuff. (Hope you weren't eating when you read that.) And his lungs are super crackly. The dr. couldn't even hear his heart over all the crackles. That's the really good news because he was clear on Saturday. That means he's more than likely sick rather than it being a worsening of the quality of his lungs. In other words, this is probably not a permanent problem for him. YAY!!

His blood pressure readings are a little high. So, we're also working on understanding what that is all about. Lastly, we're watching for pulmonary hypertension. That is apparently a common side effect to kids with his kind of lung disease. Poor guy.

The original plan was to just be here last night and go home today. Now the goal is to be home at the end of the week. I think that's a great goal. I'd honestly rather stay here and find out what the deal is than be coming and going and never really knowing what is happening.

Monday, November 2, 2009

Another Weekend in the Hospital

I went to pick up Little Guy the other day after he'd been playing on the floor. His face looked dirty, so I tried washing it. Nope. Not dirty. Just gray. Yikes! I had the King check all of his tubing to be sure everything was hooked up correctly, and then had him bring me the oximeter. 84%!!! Not so good. We increased his oxygen, and that didn't help so we increased it some more. Finally we got his sats into a normal range and waited for the oncall dr. to call us back.

The doctor who returned our call was a total jerk. No seriously. He was just mean. He told me he had no idea what NEHI was, but that I had to bring Little Guy to him to be seen. I asked him to please consult with a doctor who did know what it was. Nope. He refused. What!??! You have no idea what my kid has, refuse to consult someone who does, but you want me to bring him to you???? I think not, my friend.

I got a hold of our regular doctor the next day just as he was starting to look a little bit gray again. She insisted that we go in right away to the ER and had them ready and waiting for us. Really, she wanted him to come by ambulance, but I just wasn't having it. I knew we'd be sitting I had oxygen with me and that I could get there quickly, so I took him myself. I don't think she liked that I did it that way, but it was what I felt was best. Imagine that! A mom thinking for herself a little bit about what is best for her child. Novel idea, right?

Anyway, we got right in and they observed him for a while. Of course is sats looked great while we were there. That's what always happens, isn't it? They admitted him for observation which made me cry for some reason. I think I was just overwhelmed and thinking it would be like last time when we were there for a full month. Plus, the doctor I understood to be on call was the one I'd spoken with the night before who was a pompass jerk and too full of himself to ask for help. WHY would I leave my baby with him??!?

As it turned out, an hour before he was admitted the shifts changed and the partner to our regular doctor came on call. She spoke to me personally as I tearfully explained my objection to letting him be admitted. Swine Flu all over the hospital for starters, but she told me she'd put him on the pulmonology unit which was much safer. I also told her how I felt about him being with some doctor who might not know what to do. Remember the one who wanted to send him home with me knowing CPR and nothing else? Yeah. She was a gem. What if I got someone like her again. Again, the doctor promised me it would be she herself who would be treating him.

With those promises in place, I consented to let him stay. We only wound up staying about 24 hours, so I made it home in time to trick or treat with my kids. and Little Guy got to show off his Superman costume. Can't complain about that, right?

So, we are home now. He has a new nurse who comes daily to check his vitals and a nurse who will be coming twice a week for eight hours at a time. I think the goal is for him to be sort of homebound now. We'll see how it works, and how long we get to be home for.

We've increased his oxygen to a full liter, and it's still a little bit iffy. *sigh* We shall see...

Tuesday, October 20, 2009

Brotherly Love

I never cease to be amazed to witness the dynamics that go on between siblings in our home. The most fascinating, I think, is Number One. He has very little tolerance or patience for The Beast most of the time. When he has those moments where he is willing to work with the Beast, though, it's like they're shining moments. He can be so loving and creative with his younger siblings.
The relationship he has with Little Guy is one of pure love. He speaks calmly to Little Guy, pays attention to the little details (like whether or not he's blue...okay, maybe that's a bigger detail), and is just generally protective of him. They have an unspoken love for each other.
Like with The Beast, when Number One decides to show his love, it's a shining moment. As you can see from the look on Little Guy's face, the feeling is deeply mutual.

Pumpkin Fun

Who says people with special needs can't have a great time?! Each Monday night, we have family night. Sometimes we play a silly game, sometimes we go somewhere fun, sometimes we just hang around and sing songs. It just all depends on the night (and the mood of the children). This week, we decorated pumpkins. We don't usually carve them because pumpkin guts make Number One break out in hives.

I got a variety of crafting supplies, and we went to town. Little Guy's is the one with the canula (it's a real canula that he isn't using anymore. I made the hearing aids out of pipe cleaners). Snort's is the one next to Little Guy's. I thought they came out pretty darn cute myself. :)

Look Who's Standing!

Well, okay. So, maybe he isn't standing totally by himself. But he is finally pulling himself up to a standing position on things. That is a big accomplishment. We're really excited to see that he is slowly building up more lung stamina. He used to be just too tired to work more than ten minutes or so without a good long nap. He worked the full hour with Ms. Kristi. It could be due to the fact that she completely adores him and he knows it. The fact is that he's got her wrapped around his adorable little finger. Just look at her in those pictures totally in love with him!! Ms. Kristi is his Deaf ed. teacher (and the Beast's, too!). We love when Ms. Kristi comes because she brings some great new toy every time. This week, it was some stuffed animals that sing and light up. I think Little Guy is totally in love with them...and perhaps with her. I don't know how I'll ever break it to him that she's taken.

We're hoping he can keep up the great work. He was diagnosed with RSV today, so we're watching him very carefully. So far, so good. And that's the way I hope to keep it.

You may have also noticed from the pictures that he has big tubing coming down. That's the corrugated tubing we bought and string his oxygen tubing through. It works great at preventing him from strangling himself, preventing siblings from twisting it, cats from chewing it, and well...let's just say it's been truly a life saver.

Friday, October 16, 2009

Hannah Andersson Pilot Cap Ordered

So, I decided to finally give in and order Little Guy the Hannah Andersson pilot cap. With the Beast, bandanas worked great to keep him from taking out his hearing aids. For Little Guy, not so much. He can get those babies out of his ears and into his mouth in the blink of an eye.

I'm not horribly excited about the pilot caps, but at least it's fall. He won't look like too much of a weenie wearing a hat in the fall and winter. I tried to choose the least weenie-ish colors, too.

The reason it had to be this particular kind of hat is because the material is thin enough that the sounds can still get to the microphone on his hearing aids. Anyone else have any other fabulous ideas on keeping those aids out of his mouth? It doesn't help to provide him with constant oxygen if he's just going to choke to death on a hearing aid anyway.

And, of course, pictures will come as soon as he gets his new caps!

Tuesday, October 13, 2009

Why Me? Why Not?

With the current poor economy and the outbreak of so many illnesses and the increase in autism and whatever else one can think of, I've noticed a new sort of disease. Why Me Syndrome. I have some thoughts on this that are mine and mine alone. I'm going to share them and you're welcome to read on with the understanding that I'm in no way trying to be unsympathetic to the plight of those who suffer. On the contrary, my thoughts and prayers are continually with those who weep, suffer, and are heavy burdened.

I think it needs to be put out there that no person is ever going to be exempt from pain and suffering at some point in life. Why, then, do we often find people crying "why me?" when bad things happen? Sometimes I feel like the only answer I can give is "Why not you? What have you done to exempt you from ever having undesirable things happen to you?"

Let me explain myself. It's my firm belief that muscle can only be built through hard work and endurance. The same goes for emotional and spiritual muscle. If we don't have opportunities to endure, we don't have the chance to build our emotional and spiritual muscle. While times of trial and tribulation can often seem like a dark tunnel with no light in sight while we're in the midst of them, it's undeniable that we come out stronger because of them. We may not see it right away, or maybe not ever in this life, but the painful hardships we endure today are providing the framework for the stronger, more capable people we have the potential to become tomorrow.

I get asked the same question all the time. It's not always phrased the same way, but the jist is the same. "How do you do it, Aimee? How do you handle five very young children, three of whom have special needs? Do you ever wonder why you are the one with these children and these difficulties?" I'll tell you how.

It's very simple really. I was taught from a very young age that the trials we face in this life are God's way of complimenting us. We are told that God won't ever give us more than we can handle with His help. If He honestly believes that I can handle all that He's given me, He must think very highly of me. And that is a compliment.

Another thing that leaves me feeling okay about mothering these particular children is greed. Plain and simple. I'm greedy. I know beyond a shadow of a doubt that enduring to the end will result in guaranteed blessings, and I will do anything to earn more. I know that these blessings come because I've experienced it first hand. I won't go into the details, but suffice it to say that my family and I have had far more goodness in our lives than we've had hardships. It's not even always so much in a spiritual sense. Sometimes it's just plain and simple happiness. Before we had children with special needs, we were unable to see the amazing details of day to day life. We didn't realize how amazing it is to see your child walk for the first time, or to hear him utter his first real word. We took good general health for granted. The task of breathing in and out while still keeping our hearts pumping was mundane and never thought of. Now, I relish the time I spend just watching Little Guy breathe in and out and in and out. And I'm happy for those things.

I think there are many people who live by the misguided notion that living a life that is good and faithful to whatever religion they embrace should exempt them from pain. The truth is that there is really no "vaccine" for hardship. No one can prevent it from spreading to themselves. Living a good and faithful life is simply one way to find the tools to face pain head-on when it comes. When we live by the principles of some gospel and have a belief in some sort of God, we give our lives a sense of purpose and meaning. We give ourselves an outlet through which we can seek out peace and comfort. All of these things can ease the pains we suffer, though they can't prevent them from coming in the first place.

Setting aside the spiritual aspects of it all, I have to ask why NOT me? Were I to sit down and cry and pout and beg someone to explain why me, I would hope someone would point out that I am no different than any other person on this planet. I don't come with some special ticket that allows me to go directly to the front of the happiness line. Last I checked, there was no "get out of jail" card for pain and suffering. Why and how could I for one minute think to myself "why me?".

If not me, then who? Who would I see fit to suffer my pains and frustrations and disappointments? What makes me so much better than anyone else that I should think I don't "deserve" this to happen to me? Really, who does deserve to suffer? Is there one person more deserving of afflictions like cancer than another? Does one set of parents "deserve" a perfectly healthy baby more than another set of parents? Does one baby deserve to come into the world and become part of a healthy well-functioning family more than another baby? Were we really able to decide who to give pain to, how would we decide that? How, as a society, would we decide why one person over another?

I'm not going to lie. It's not easy. I've had frustrations time and time again. I've had times where it just seemed like one bad situation after another was piling on me. There have been times that I've felt that I just needed to sit down and cry, and that's precisely what I've done. Just cry. I get tired, so very tired sometimes. Sometimes I want to run and hide because I feel woefully inadequate for the responsibilities placed before me. On occasion, I have to acknowledge that it hurts to know that so many people look at my children with pity. Who wants perfect strangers to feel sorry for their children? No, it's not easy. It never has been.

To those who ask me how I do it, I want to say that I really can't imagine not doing it. Mothering these children is what I was born to do. They are my purpose. I don't know that I had the tools to provide all that they needed from day one, but I know I've worked hard to gain those tools, and in so doing I've become a better person. Facing my hardships head on has made me a stronger person in so many aspects of my life. I've looked the fear of failure in the eye and beaten it. I'm by no means the perfect mom. I never will be. But I, with all of my shortcomings, am the perfect mom for them. That I know for sure.

I don't know that my ramblings have made any sense in terms of the Why Me Syndrome I see so often. My point is simple, though. When we sit down and cry, why me, we miss out on seeing the opportunities for growth right in front of us. Whether it be growth for our caregivers in our times of physical weakness, or our own opportunities to gain knowledge, or simply the opportunity to come to really appreciate life for all it is, the opportunities are there.

My plate is full. All our plates are really overflowing with stress, worry, pain, frustration, and whatever else is weighing on us. I can't ask why me because I honestly can't think of one reason why NOT me.

We Survived Another ARD

The Beast finally had the follow-up ARD after all of his testing was done. There isn't really a ton to report. They say his IQ is average, but acknowledge that it was a "heavily linguistic" test and was given orally. Okay, so you gave a profoundly Deaf kid an oral IQ test and he still managed to come out average? Think that might mean he is probably a little higher than that? Yeah. Me, too. At least they admitted that they agreed with me on that one.

As for speech testing, they did lots of "hearing children" testing and he's normal, so they're dismissing him from speech. I'm fine with that, but I'll be watching closely since they didn't really give him an auditory processing test. They just sort of observed him.

In defense of the school, I do have to admit that the Beast is a tough case. He is Deaf and that qualifies him for lots of services. On the same token, though, he's not the typical Deaf kid. Were it not for the processor on his head and the hearing aid in his left ear, you'd never know the kid is totally Deaf. I guess that's a good thing. I do still worry about him slipping through the cracks now and then, though.

So, that's about all there is to report on his ARD. I'm so glad we got him the teacher we did. She was the perfect choice for him. Sweet, soft-spoken, and not going to take any crap from him. If anyone can help him break from his defiant streak, she's the one to do it.

Thursday, October 8, 2009

First Kindergarten Report Card

You may remember my post about Kindergarten not going so well. I had some serious reservations about the way things were going for the Beast. And I worried. A lot. Luckily, I had the foresight to get the Beast the very best Kindergarten teacher in the entire school district. And I'm not disappointed.

We got his first ever official report card today. He has an M (mastered) in all but social studies where he has an S (still working). Couldn't ask for more than that. And, to top it off, his teacher found only positive things to say about his behavior. She did acknowledge a need for some improvement in a few areas, but she says it in such a positive way that I can't help but be one proud momma. And I am.

A Happy Call from the Pulmonologist

Little Guy's pulmonologist, Dr. Sanchez, called today. She got the results of Little Guy's sleep study, and decided to pass them on to me. I couldn't be more thrilled!!! According to the sleep study, he no longer has an obstruction when he's sleeping!!! We were having to put him on 2 liters of oxygen while he slept. Now, he only needs .25 liters while he sleeps!!! It just doesn't get any better than that, does it?

He's also crawling everywhere, seeking out opportunities to communicate with people around him, and has mastered the art of eating his hearing aids. I did buy him a lovely new halloween bandana to go over his aids. Think that'll deter him from eating them in the future? Nah. I didn't think so, either. I'd be bummed, but I'm too excited about Dr. Sanchez's call.

Sunday, October 4, 2009

Greasy,. Grimy, Grody, Green Beans

Little Guy is hitting mile stones like it's going out of style lately. He's army crawling, "talking", reaching for everything in sight, and putting anything in his mouth he can get his hands on. Well, almost anything.

Green beans are not Little Guy's favorite. He happily eats all the fruit I can offer him. He slurps it off the spoon with vigor, and can't wait for more. I decided to go ahead and offer him some most delicious veggies in between bites of fruit. As you can see, it didn't go so well. Just from the look on his face, you can see that he's most definately made his opinion known. "Please, Mom, no more greasy grimy grody green beans."
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Friday, October 2, 2009

A Proud Accomplishment

A few weeks back, I received a comment about a website called The poster was one who oversees a variety of blogs covering thousands of health related topics. She invited me to apply for my blog to be a regular blog for her website. To my suprise, my little blog was accepted. To visit wellsphere, you can simply click on my handy dandy little badge in teh upper left corner.

I welcome and look forward to lots of new readers, and I sincerely hope that what I have to say here is helpful to someone somewhere.

Tuesday, September 29, 2009

So, I Finally Took Them to a Geneticist. And I Hated It.

Ever since the Beast was just tiny, Dr. Peters has suggested taking him to a geneticist. He had one he highly recommended, but I fought the idea tooth and nail. Somewhere inside of me, I just knew his hearing loss was "my fault". I mean, I know I didn't choose it for him, but we all know it came from my side of the genepool. My biological dad and his brother are both Deaf. We know that much. Beyond that, we just don't know much about him. Anyway, suffice it to say that I'd really put my foot down about it, and was not going to budge.

I actually stuck to my guns for years. When Snort started having vision troubles and falling behind developmentally, Dr. Peters suggested it again. Again, I gave a very firm and deeply emotional "NO!". I didn't want someone in a white coat with lots of letters behind her name pointing her finger at me and telling me this was my fault. I know. I know the questionable genes come from me. Why rub it in, right?

Then along came Little Guy. We knew right away that he was Deaf. Again, the suggestion came to do the geneticist thing. Again, I said no. It wasn't until Little Guy was out of the hospital with a strange diagnosis of a very rare lung disease that I finally (albeit reluctantly) listened to Dr. Peters. Today, I sucked it up and took the three youngest boys to see her.

I have to be honest. I hated it. I hated everything about it. From the intrusive, though I'm sure necessary, questions to the pointing out that my sons are all very small in stature compared to to the King and me to the comment about how fascinating it is that my children have such a vast array of disabilities, everything about the appointment just felt icky. I hated it. Really, I just wanted out. I wanted the walls to stop closing in on me and the questions to stop coming and the measurements to stop being made. I wanted her to be more patient with my highly inquisitive Beast and my overtired Snort. I wanted her to be more understanding of the fact that I hadn't been informed that I needed more adults with me and that I'd know that if I'd read her website. (Ummmm, that's interesting. No one ever told me about a website. Not pointing fingers, of course. I'm just sayin'...)

I'm sure there were good parts. She did seem very interested in my children's history, but I figure that, like all the other specialists, she's really just interested in learning more about my kids so she can present the case to a room full of white coats who see my children only as case studies, and not so much for the amazing individuals that they are. She was also very thorough. She checked them from head to toe, noted birth marks, and even inspected their butt cracks. (Anyone know why she'd check there? I'd love to know if someone would like to enlighten me.)

She let me know how nice it would be if they all had the same genetic "thing" going on, but all professed it in different ways. That said, she really didn't seem to think that was going to be the case. Still, she started by drawing the blood from just one of the boys. Since Little Guy was the only one who couldn't argue, he was the one who got poked. Luckily, he didn't even seem to notice. That's my brave little guy right there!! After those tests come back, I suppose she'll have more to go on and may look closer at the individual situations of each boy later.

I was totally up front with her. I told her I have no interest in knowing what she finds out. I mean, I guess my interest is peaqued just a little, but certainly not enough to want to know. Let's face it. DNA is really just an outline of what might come later. It tells us what disorders we may be predisposed to, or what causes certain parts of us (like Deafness or rare pulmonary disorders), but it doesn't really determine who we are. We determine that.

I remember when the Beast was just weeks old and a Deaf Ed. teacher came in and told us that it was likely he'd never talk and reading might get up to as high as a fourth grade level by the time he graduated high school. We lost so much precious time with him at that point because we were so wrapped up in what might be. We were so busy mourning the loss of our dreams for him that we failed to see all the reasons to rejoice in him. It was like an expectant mother who takes pre-natal blood tests and is told she might be carrying a Down's Syndrome baby. She worries, panics, frets, and fails to enjoy the time she has while that baby develops inside her. By the time the baby (who is usually perfectly healthy despite the testing) is born, the mother has spent so much energy worrying that she has to work that much harder to bond with the beautiful life she is holding.

I won't let that happen again in our family. I won't let some lab test tell me what might come to pass. I don't want to spend my children's lives always worrying that they might be predisposed to one thing or another. I want to enjoy them. I want today to be a special day where I just breathe in the moment and enjoy the children I have.

Up until now, we've always taken it one day at a time. We've had some surprises here and there. But we've dealt with them. I didn't have to worry and wonder when Little Guy would show us his breathing problems. It happened in its own time. And we handled it. I don't tend to worry about having babies with hearing loss. When they're born and are given the hearing test is when I decide whether to worry.

So many things could happen in life. We could be blown away by a huge gust of wind, be bitten by an incredibly rare, venomous and unknown breed of duck (I know. Slim odds.), step out into the street and be hit by a car, or be struck by lightening while on our daily jog. Many things could happen. Just imagine what the world would be like if we all sat around worrying and trying to prepare for what might happen. Look how much of life we'd miss. I'm not suggesting that we shouldn't be prepared for some things. I am simply saying that sometimes it's just better not to know.

So, that's what I told her. I don't want to know. "Share the information with my children's doctors so they know what to look for if you want. I just don't want to know. I want to love my children for who they are today, and not dread what the DNA says they might become tomorrow." I think she understood my point. She didn't bat a lash, but simply took note of it. I guess I did like that part of the appointment. She did say she's bound to tell me if she finds something life-threatening. Sure. I'll be waiting by the phone.

Anyway, there it is. I took them to the geneticist. And I hated it. I suppose that, if it can help other doctors prepare to help my children, then it was the right thing to do. If not, it was just a really lame way to waste a whole lot of time and money. Either way, it's done. And, for me, that says a lot. I took a big step today. And I hated it.

Monday, September 28, 2009

Kindergarten Progress

There is something about being the mom to a special needs kid that, I suppose, causes to me to feel like I have "something to prove". In my efforts to prove whatever it is in my mind that I think I need to display, I think that I often put too much pressure on my sweet Beast. I want so desperately for him to have a typical life and fit in like all the other kids that I forget that it's just not possible for him to have a typical life. Why? Well, because there is absolutely nothing "typical" about him at all. On the contrary, he is absolutely extraordinary. Everything he says, does, feels, experiences, creates, even breathes is extraordinary. How could I, a loving mother, ask my child to reduce himself to "typical"?

That's precisely what I was doing. Each day, he comes home with his little calendar. If the square for that day is colored, it indicates that he did something out of line or inappropriate in class. I was okay with him coming home on the green. That meant he took one misstep. That's not so bad. Then comes yellow, then orange. After that, the dreaded RED square on the calendar. It doesn't get worse than red. Well, maybe it does. White and black prison stripes might be worse. Maybe.

Anyway, I was having little heart attacks as each day went by and his chart started looking more and more like he'd tasted the skittles rainbow or something. Not good. I was bracing myself and remembering to breathe deeply each day. And, really, I was doing it very well. Then he came home on the red. THE RED!!! I fully expected an officer to arrive at the door to issue a warrant for his arrest.

I was taking away all of his privileges when he came home with these marks. It didn't seem to bother him much. This kid could find fun alone on an island. He'd just make friends with the crabs and giant squid. I tried a little bit of everything. Nothing worked to motivate him to just stay on the white. I begged, I pleaded, I bribed. Finally, I sent a message to his teacher expressing heartfelt apologies for his behavior and asking what, if anything, I could do to help him make better choices. Her response? "Chat with me after school." Ok. I could do that.

I went in armed with ideas to help make it better. I was fully prepared to invoke an ARD meeting if I had to. Being the amazing teacher that she is, she reminded me through her actions why I hand-selected her for him years ago. "Aimee, he's doing so much better. I know he still needs to work on compliance. But look at how well he's taking his consequences in class. He doesn't really need a punishment at home. He's already had it at school. And he's LEARNING from it all." WHAT?!?!!? All my worry, my sleepless nights, to prove that he was okay was for naught??? You mean to tell me his teacher already knew? She already knew how to work with him? How to bring out the best in him? She knew he was teachable? And lovable? Special? It was as if a million pounds had been lifted effortlessly from my shoulders.

So, I don't know that it's the Beast who is growing and maturing in kindergarten. And, I really don't think it's his teacher he needs to grow in her ability to work with my special needs kid. The truth is that the only thing special about the Beast is everything. He is special, and extraordinary. I am the one with needs. As we've moved through these first weeks of Kindergarten, I'm the one who is doing the growing. I'm the one who is learning to work with, love, accept, and embrace him for the extraodinary person that he is.

I can't complain much. I'm just greatful for so much kindergarten progress...on my part.

Tuesday, September 15, 2009

The Hazards of Having a Sister

Luckily for Pretty, Little Guy is quite the easy going little person. Pretty has apparently given up on having any sisters and has instead resorting to using what resources she does have at her fingertips. Unfortunately for Little Guy, all the other boys are mobile. Since he's the one who can't go anywhere, Little Guy got to be the lucky one to wear Pretty's tiara. She was so proud of herself when she put it on him, too. It doesn't appear that he minded too much.

Actually, I think he rather liked the attention. Although he couldn't hear much of what we were saying, he could see us smiling and laughing with him. He began smiling and kicking his legs as fast as he could while making his favorite "wa wa wa wa" sounds. Those sounds have stuck with him, too. They're the sounds he seems to like making the most. I was very proud to see him performing for our auditory verbal therapist. Way to go, Little Guy! If wearing the tiara makes you talk like a king, then wear it to your heart's content!!
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