Just have to push harder, fight harder...that's all I can do

The last year has been hard for us.  Deployment, health problems, lots of fun stuff, but we've gotten stronger as a family.

The fight to push harder, fight harder is going to get harder.  Caleb's appointment with his doctor this week was disappointing, and crushing to me as well.  I have poured therapy down that child for years and years.  But unfortunately its not doing what we want it to do. 

The news we received was that Caleb has regressed significantly and is getting more 'autistic.' Yes, I put quotes around that word, because I don't use that word.  I don't like the implications of the word 'autistic.'  It's like saying Autsim is all he is, but it's only a piece of him. 

We have to get a complete and new re-evaluation of Caleb.  That will be done, either next month after we've finally gotten into a developmental pediatrician, or when we go back to see her in December.  Let me tell you something about waiting lists while I'm at it.  Caleb has been on a waiting list for a developmental pediatrician since we moved to Colorado.  That's 2 years people.  Just imagine trying to see your doctor and needing to see your doctor now.  There is such a high need for doctor's who can do this stuff.  I wish there were more!

After hearing the news, my mom was with me and was trying to draw me out of the funk I was in.  I can't explain it.  It's hard for even me to express the amount of crushing feelings I am having.  Part of me is screaming with anger, saying why didn't I do more, push him harder.  Part of me is sobbing with grief, as I am watching my little boy slowly slip further and further into himself.  The biggest part of me is resolved to try even harder.

Most of you who do know me, I am a fighter.  I don't back down from a fight.  When people told me Caleb would never talk, we got him to talk.  You tell me my child won't do something, that's like a challenge.  And I love a challenge. 

The biggest thing I ask is for you to pray for us.  I could really use that right now.

Deployment is ending. So what have I learned on this journey?

My husband is coming home.  It's only a matter of weeks or days now.  I am very excited, but it's also given me some time to think about the last year.  This year has been hard, really really hard.  In fact, there were days when I wanted to throw up a white flag and surrender.  But you can't do that.  You have to go on.  As an Army wife, we have to stay strong for the soldiers overseas, our families, and ourselves.

But it's not always easy. 

There are those days where I wanted to sleep in, where my husband would take over, get the kids ready for school and say, just hang out in bed.  Yeah right...that didn't happen for a year!  And I'm ok with it.  You sleep when you can.

Then there are those nights when you have to mentally tell yourself to stop thinking about all the bad things that could be happening.  What happens happens.  You have no control.  I stopped watching the news.  Except when the government threatened to shutdown.  I should have never watched that.  It just made me crazy.

There are also the nights when you feel so alone.  You want to curl up to your husband and tell him how much you love him.  There's no one there but an extra pillow and you and your thoughts.  Those thoughts compile on top of each other until you're just bursting into tears.  Sure, I'm not a touchy feely person.  But there are nights when I just need a hug or want to be held by my husband.  When you have to miss out on that for an entire year, it takes its toll.  It sucks. 

But you know what I learned?  I learned that I can take just about anything.  I had a good support system, thanks to my two closest friends, Linda and Sueanne, who helped me the most throughout this!  They always listened whenever I needed to talk.  My family was pretty helpful as well.  I don't always get along with them, but we do ok. 

Then there's all the craziness that I had to endure.  From my health, to my kids constantly getting sick or going to the emergency room, or dealing with my son's possible loss of hearing.  I have managed to deal with it all.  This deployment has made me a stronger person. 

I am very glad it is over and cannot wait to have my reunion with my husband!!!  We're counting down the days!!!

Another obstacle my family endures...yet we muster on.

I lost a little of my hope today.  I usually look on the brighter side of things.  I have been through worse.  Today I felt blindsided.  Today was Christian's final hearing screen.  This was supposed to be the last hearing test we were to deal with after all the ear infections, after all the ear surgeries.  THIS WAS IT!  I was excited.  We were done!  We got to the hearing clinic early, as expected with all military appointments, and waited for the hearing screens to begin.  The right ear was perfect.  Then, the left ear showed a big flat nothing.  When you put the ear thing (I'm not sure what it's called) in an ear, the ear drum is supposed to show a little curve, kind of like a lumpy bell curve.  Christian's left ear registered nothing.  It was flat-lined.  The doctor's eyebrow raised, she re-administered the test.  That set off warning bells in my head.  CRAP...this is not good.  Another ear infection, I thought.  Maybe it's nothing.

Then the additional testing began.  She looked deeper in his ear.  She was looking for something...something that I didn't understand.  I thought we were finished.  I thought he was in the clear.  Finally she was done.  Christian was such a pro throughout the entire screening, turning his head, laying still, and doing whatever she asked.  I was very proud of him.

The results are not good, she said.  There are two things that could be going on.  First possibility (the one I'm praying for) is that he's blown another hole in his ear drum from an ear infection.  That can cause hearing damage, but we'll cross that bridge when we get there.  The second possibility is that he has complete and total loss of hearing in his ear.  That is what stunned me the most.  I'm not ready to believe that.  I know there is some great technology that we can get for kids with hearing loss, but after all this time, after all these surgeries to preserve his hearing.

I sat in the car, not really sure how to react.  This battle isn't over for me.  I will be damned if I give up without a fight.  Even if it turns out he has complete hearing loss in that ear, we will fight on.  But I'm still horrified, devastated, and in shock.  I am scared.  This is a new thing for me and I don't know what to do.  I honestly felt completely without hope for a few hours.  I wanted to scream at God and yell.  People tell me all the time, God only gives you what you can handle.  I'm like seriously?  How much more can I handle?  It's one thing after another after another after another.  I feel like an egg with so many little cracks.  One more crack and I am going to explode all over the place.

I pick myself up, call a few people, who help put my mind at ease.  I can deal with this.  I am in shock, but I can deal with it.  I am a strong woman, who has been given a life that not many people could handle, and yet I muster on.  I must pick myself up off the ground and hold myself up for my children, my husband and my family.

The initial shock is over and I have in my head what the plan of action will entail should the unthinkable happen.  Hearing loss isn't the end of the world.  It sucks, but it isn't the end of the world.  Please pray for my family as we walk this very nerve-wracking journey. 

Branching out of my comfort zone: Trying New Things

This is really hard for me to admit.  And it makes me feel like a bad parent.  I don't like trying new things with my children.  I don't like taking us out of our comfort zone of what we do for 'normal' activities.  So far its worked for us for the last 9 years.  But I got to thinking, I am really making a mistake.  My kids are missing out on experiences that they'll never get back.  I am missing out on those experiences.  I don't like blaming Caleb for not trying new things, this is all on me.  I am scared of what will happen with him when we do it.  Don't get me wrong, I am proud to have a child with Autism.  It has given me a calling that I never thought I would ever find.  But it does have some drawbacks for us as a family on occasion.  We can't just up and go do things whenever we want.  We have to prepare.  Those preparations can take on the upwards of hours, days or weeks, depending on the situation.    

I got invited to take Caleb and the other boys to a baseball game.  I'm not going to lie, my instincts SCREAMED no.  But with all the thinking I had been doing lately, I decided, let's give it a try.  And I prepared him for several hours.  I showed him the stadium, I talked about what a baseball game was, I talked how we would have a picnic lunch.  He was prepared.  About an hour before we left, it set in for him.  "I DON"T WANT TO GO!"  He screamed at me.  This is normal for him.  He gets very upset when being taken out of the comfort of his home or put into a new situation.  He goes through phases.  First we scream, then we get very antsy and beg not to go, and finally he accepts it and pouts.  

We got to the car and I keep hearing him ask me, can we go home?  It is nerve-wracking and breaks my heart that this is so hard for him.  It's just a baseball game!  I hear my 4 year old son Christian reassuring him, Caleb, its going to be so fun!  That child is so good at helping calm him down.  There are days when I don't know how I could be so blessed with such a mature child. 

We get to the ball park and the moaning and groaning begins again.  He doesn't want to get out of the car, it's too hot, I want to do this and that.  Again very typical Caleb when he's upset or thrust into a new situation.  But we soldier on.  We meet up with my friend Linda and discover we can't bring food inside.  OOPS!  So it's an impromptu picnic!  We grab a seat on the ground and pull out our lunches.  Caleb is very happy to remember I have packed his favorite: PB&J.  Christian doesn't really care, he just wants to go inside.  Cole is more interested in eating rocks. 

So after we've had lunch and gotten our sunscreen on, we get inside, get our cool new piggy banks and programs.  We find our seats and have a seat.  We didn't realize it was going to be SO hot.  It was 98 at the warmest part of the day.  Glad I packed lots of water, the one thing they allow you to bring in.

We made it to the top of the 7th inning before we felt that the kids had had enough.  That's an incredible amount of time for Caleb to be put into a situation like that.  The stadium was fairly crowded, it was hot, and it was a very over-stimulating situation for him to be put in.  AND I have never been more proud of him for how he did.  He really was interested in meeting the mascot and we chased him a few times to try and get his autograph.  We'll try again next time. 

This really taught me that my son can do more, that I can expect more.  But more so I learned that I don't have to be afraid of what can happen in a situation like this.  I can deal with the stares, I can deal with the snickers, I can deal with the name calling.  I am not afraid.  I just need to be less afraid of the unexpected, which is something I have yet to master. 

Below are a few highlights from the game:

Lesson for me: Don't be afraid to try new things, what happens will happen!            

Just for me: Making time for myself.

I admit it, I am not the best at giving myself a break. I am a yes girl. When someone asks me to do something, I not only do it 100% but I try to go beyond that 100% to make an even bigger difference. I love helping people. It's is why I am in the field I am in. I love the fact that if I can help one kid with special needs then I have made a difference.

I think the time has come for me to dig a little niche for myself. At the end of the day, there is not a long that I do that is for me. Ok, well maybe not completely. I do happen to watch some tv shows like Greys Anatomy and Criminal Minds, etc. I don't have any hobbies, because I feel it is taking time away from my children. And now that I have another child who is possibly going to be in the special education system next year, I had a MAJOR break through. I do too much.

So, I took into account of what I need to do for myself. I watch tv, oh boy is THAT exciting. LOL but that's not something I can live for. Its not something to get myself out of bed every day. What do I love to do? That was really hard for me to think about. For the last 9 years, my entire world has centered on taking care of my children or addressing Caleb's special needs. For me that is my entire world and I do adore what I do. I can't see not working in special education. Special education is a part of who I am.

And then it came to me. I love cooking. Tweaking recipes, creating recipes, looking over recipes that have been done and deciding if they're really worth keeping, etc. I love to do it. I mean at one point I was considering being a chef. I just got burnt out. So I decided. I was going to cook and blog about my recipes. But not just any recipes. These recipes have to be healthy, kid-friendly, and easy to make. Most recipes fail in one category of my mandatory requirements.

So for the next year, or even 6 months, I am embarking on a cooking/blogging journey to find great tasting recipes that a kid will eat and a diabetic won't go into a diabetic coma from. Feel free to join me under my new blog: Healthymom Recipe Reviewer. I would love for you to tag along on my journey!

Progress

How do I explain how simple progress can means to me? Little things make me estatic! I wish I could make the world understand how we take things for granted. I may whine and complain and fuss, but truly I am very blessed to see some of the things that I have seen in this lifetime! I celebrate accomplishments that many people said I shouldn't be celebrating, but I have a few words for them: WHY NOT?? Life is meant to be celebrated! Below is are a few things that I have been celebrating through progress!







My Weight: Most of my life has been a struggle with the bulge, and I know I'm not alone in that. I don't want to be supermodel skinny, besides that's just gross! I want to be healthy! I want to be around to celebrate my children's children and so on and so forth. Losing weight has been one battle after another. My health is usually not affected, but since my husband deployed, I've been fraught with children being sick and so on. So, it has taken a beating on my body. These last few months have been a major battle that I have not lost. I have slowly began losing weight. My goal weight is not something I will reveal, nor will I tell what my weight is. My goal is just to get to where I need to be. I have lost a few pounds and have been tracking it weekly. So far so good! I may make my goal before my husband comes home!























(Pardon the pedicure people, I'm a single parent!)





My Children: My children have always been the most important thing on the Earth to my! I have learned many things about them from just raising them. My oldest has been a prime example of why I cannot and will not ever take anything for granted. He has been a joy to watch grow into who he will be. Mind you, his development has been one battle after another. Caleb did not speak until he was 4 and he had many physical developmental problems, which he still experiences today. But I choose to celebrate his accomplishments, instead of mourn that he is not like other kids. I celebrate that after months of trying to get him to gain weight, we are up to a whopping 70lbs! I celebrate that after months of struggling to write his name, he finally can do it! I celebrate that he is almost to double digit addition. Sure, other third graders his age are doing things that he is not, but I don't care. My son is doing what many people told me he would not.







Christian has been an interesting child to watch develop into a little man. He is constantly challenging me for authority and reminding me why I do in fact love my kids so much. He has been my fast developer. Between 6 months and 8 months he sat up, crawled and then started walking. At 1 year he was starting full sentences. This child never fails to amaze me with some of the things that come out of his mouth. Some of the funnier things that I have heard are he asking me to move the dark so he can see his mountains. Or if we're shopping in the store, he'll see something and tell me to put it back because we have it at home and we don't need it. He's definitely going to be an onery one. Oh wait he already is! His tenderness for his brothers melts my hearts, and his stubbornnes for causing trouble makes me want to pull out my hair! This one is going to drive me batty!

Cole has been a very cute little monkey to watch develop. He has changed in many ways and I am definitely interested to see how he will continue to grow. He adores his brothers and calls for them when he wants them: Bathers. He likes to scream Mommy whenever he sees me, which is totally cute and annoying at the same time. But I have to remind myself, what if he didn't talk at all? What if he didn't say anything? I am lucky that I have a child who is verbal, after having a baby who was not for a very long time. Just today, he took a tenative step towards walking. He was so excited about it, but not nearly as excited as his big brother Christian who yelled at the top of his lungs MOMMY HE'S WALKING!!!!





My Marriage: So marriage is hard work. It's not some little love story where you fall in love, and everybody lives happily ever after. Marriage is work. I wish someone had told me just how hard marriage was, so I would have been a little more prepared. We were so naive when we were dating. It was fun and games and then after marriage comes the hard work.




Don't get me wrong, I love being married! I love my husband very much! I just wish someone had told me how difficult it would have been. Marriage is about sacrifice and love and sadness and happiness. All sorts of emotions that I never thought I would feel. We have made it almost 10 years and I am definitely looking forward to another 50!

So when you get upset that your not losing weight, take a few steps back and think what could I do to fix it? When you're not making good grades, think about what you could do to improve it? And if your child is not on track, celebrate the person they are, not the person you want them to be!

Did that REALLY happen??? Some days I can't believe it!!!

I had a bad day last week. And when I say bad day, it was truly brutal. I had a bad reaction to medication that caused my hands to swell up so badly that one of my rings, my engagement ring that I had proudly lost weight for, was stuck. I tried EVERYTHING to get it off. And when I say everything, I mean everything. I tried soap, stuck my hands in ice (well, we didn't have ice, so I used snow), I even stooped to using windex. Nothing worked. I tried to ignore it, but the swelling continued.

I did some research to try and find out where I could have it removed without doing the most damage. The jewelers I called all claimed they could have it off in 10 minutes. They lied. My engagement ring has a super thick band, so it wasn't coming off with their cheap blades. They suggested I go to the ER or the Fire Department. I didn't want to spend 4 hours with all three of my children in an emergency room, just to have my ring cut off.

So we had a nice impromptu field trip to the fire department. The kids were excited, except Caleb who didn't want to do anything but sit and read. Christian couldn't even contain his excitement. There is something about 4 year olds and their fire engines. Its pretty cute.

Anyways, we get there and I, already embarressed about what I need to do, asked if they could cut a ring off my finger. The fire man was absolutely polite to the core. He had us come in to the immaculate station and told the boys they could have a tour of the station when we were done. As he went to fetch the blade, a younger, I'm assuming a rookie, fire fighter came up to Caleb and said he was going to cut my finger off. I looked at him in horror. Caleb looked at him with his big blue puppy dog eyes and burst into tears. I didn't know who to comfort first. The poor fireman was beside himself trying to comfort Caleb. I explained to the poor guy that Caleb had Autism and they took things very literally. The fire fighter nodded and looked horrified. He apologized and kept repeating we are not going to cut your mommy's finger off, just the ring.

I finally calmed Caleb down, who became amused with the sticker the fire fighter brought him. The ring cutting was pretty simple and then the kids got their tour of the station.

I am not upset, because the poor guy thought Caleb was just a regular kid who would understand he was joking. I even laugh about it now. Its just one of those moments where you go: Did that really just happen??? I guess someone needs to give the fire fighters some sensitivity training or something...but wow, there is no words to describe THAT situation. It was just NOT my day!