We are capable of the unknown

I am finally out of the fog that held me tightly in its grasp last month. It was so forceful that I found myself tangled in its darkness that light never was an option for me.  It was a month of struggle, mind games and joy. I don’t know any other way to explain it but only a way to live it. I find myself waiting for the joy of feeling baby Andalyn kick, swim and move inside me. Yes, it’s a girl and yes we’re naming her Andalyn Joy.

She is something that came as a fun surprise that took this year and made it go so fast that time literally never stayed with me.  It was once summer and now its fall and soon it’ll be time for me to cuddle my little joy in my arms. I crave those squishy legs I know she’ll have and I cannot wait to have her head full of hair nestled into my nose. Just so I can take a whiff of that sweet baby smell into my lungs, to let me breathe just a little longer.

I need a fresh set of lungs because I am bogged down with Gunner’s apraxia issues and the maybe diagnose of autism. Cody’s depression, my depression, and the guilt that Wyatt never seems to get enough of my attention. That I start to play mind games with myself.

I worry, that Gunner won’t ever talk clearly and that I’ll never understand him. Worry about the possible heart issues that doctors think Andalyn might have. Worry that I am not doing enough for Wyatt and that he’ll start resenting me. I worry that Cody and I will never find that balance that I seem to always need with him. I worry that I too will start resenting him for being him and not the man I need.

   

What made last month full of struggle is the fact that now, I am getting sick carry sweet Andalyn. That my liver is, was, who knows now if it’s still shutting down which makes it hard for me to be strong like I always am. 

I have been relying on the doctors to do their job which just consist of taking my blood running tests and telling me maybes. All the while my arms are filled with rashes and my mind is full of fear.

But I am finally coming out of the fog. My mind is clearing up, the light is slowly moving in and I am beginning to see that those things will be there but I will be too.

That my life has always come with the struggles because I am equipped to be strong. I was built with such strength that in times like these I can come out of with more heart, more love, more power to move forward and to drag my family along with me.

We will not be held down by the fear of the unknown. We will run toward it and slay it with all our might. Because it is not just me in this game of life. I am lucky to have my boys and sweet girl along for the ride. Who too are strong and capable of the unknown.

In Pictures: Gunner’s Party @ Antelope Island

Gunner turns 2

Little Gunner turned two a few weeks ago. Him and my mom have a birthday a day apart so this year we celebrated it together. I will treasure these photos of him and my mom.

Gunner, what a little spit fire you are. You love to jump on everything and everywhere. You love cars, trucks, buses and oh my monkeys. All though you have apraxia that doesn’t stop you from anything. You are so strong and strong willed. You are a fighter and love to fight for what you want no matter at what cost. You also make sure to keep us laughing.

Here’s to another year.

I became so bitter

Right now the front door is left open and I can hear the crickets as they call in the night. Wyatt is sitting on the couch next to me reading and whispering the chapters to himself as Gunner snores softly in his bed. It’s almost 10pm and I feel quite comforted  as I hear the night roll in. Its been a long difficult week for me, emotionally. After finding out about Gunner’s speech issue I found myself not dealing with it in the best way I could have. I let my fears over take me.

What made it worse, was the random spontaneous weekend I took with my boys thanks to Cody’s Aunt and Uncle. Now let me make it clear, the weekend in a condo, in the mountains with my boys was not at all bad. I enjoyed it. What made me have a break down when I got home was the fact that for those 4 days I was mostly by myself with the boys as Cody could not get work off.

It made me realize just how alone I was in dealing with Gunner’s news. It also gave me plenty of time at night to read other peoples stories about apraxia. Which not only do you get the extreme positive but you also get the extreme negative.

I took those 4 days and became very bitter at my husband. Here I was, alone in the condo with the kids doing everything. Cooking, cleaning, entertaining, worrying, exploring. Dealing with the whining, the overly hot tired kids, the tantrums because one was doing what the other kid wanted. Bed times, bath times, the no me time.

Where as my husband after work took his time in getting up to visit with us in the condo. He got all the fun stuff. Where the kids ran to him excited to see him, the fun games and movie time, the extra cuddles before they fall asleep on his lap, the time to go home and sleep in his own bed and have his own time.

I became so bitter. I’d think about how he wasn’t here, how he was always working and saying “yes” to everyone else but me and the kids. How he would have his friend come over to our house after he leave me and the kids alone in the condo by ourselves. How he didn’t see that it was hurting me. How he wasn’t the one researching Gunner’s issue. How he didn’t get how bad it could be or how it really is.

 

How he wasn’t the one who would be working daily, nightly doing speech exercises. How he wouldn’t be the one calling and dealing with schools when Gunner was of age. How he wouldn’t be at all the appointments, how it would be me taking Wyatt to karate, soccer, school, then Gunner to speech and all his activities.How I would be going back to work, and cleaning the house, paying the bills, taking pictures and making invitations for my sisters wedding, feeding the family and then on top of that I am having another kid. A kid, that will add to the list of things I’d be doing.

I grew very sad up there alone in the mountains. I thought about everything that was and could be going wrong. About how Gunner will struggle, how Wyatt struggles and how the baby could struggle. I even thought about how something horrible could happen to the baby before it was even born.

So when we finally did get home, I tried to vent to Cody about it all. He of course, tried to be positive (a rarity for him) saying that we will deal with whatever comes. That just made me more mad. We! I thought We, no its me. Me, and me alone.

 

I went to bed that night pissed and crying because he didn’t get it. And when I woke up the next morning and talk more to him I realized that he did get it, just not in the way I needed. After a long talk, where I cried a lot. I was finally able to listen to what he was saying and not take it for granted.

He was doing what he could. He was working hard everyday and night to make sure I was able to be here in the summer so I can deal with any kid issues that came up. That he did in fact worry about the same things I do but he did his worrying in a different way, because well, he is different.

I than realized again, like I do every time we have these talks that we are two very different people and we both react to things in two very different ways. And that him working was not to avoid or not to love me but to make sure that I and the kids could have every chance. That him not researching about Gunner’s issue was not because he didn’t want too but it was because he knew I was already on top of it. That he was allowing me to be. That he wouldn’t be leaving me alone. That he was right beside me I just didn’t see it because I was full on running towards the issue where I actually left him behind trying to catch up to me.

That’s who we are. Him, the quite follower and me the loud demanding leader.

I am not bitter anymore, just tired. Tired of leading. Wishing I was able to allow other people to jump in and support me with out unknowingly pushing them away.

Tonight, I think I will do just that.

Gunner has what?

My mind is overwhelm with information as of last night. I stayed up way too late researching and not only do I feel empowered but I am also a tiny bit well, a lot of bit scared of what the future holds for Gunner.

As some of you know Gunner has been seeing a speech therapist. It has be going wellish. At one appointment he is thriving and saying more words and using sign language and then at the next appointment he is not moving forward and fails to use words and refuses to use signs.

We’ve been on this rollercoaster.

Tuesday we had his appointment and I explained to Sue his therapist that Gunner randomly will say a word and then when asked to say it again later he wont repeat it. For example, while we were out to eat the other day as Cody and I were enjoying our conversation Gunner blurted out “dinosaur”  clear as day. Stunned we looked at him and cheered! So in my mind he should be able to repeat that word again. So later, I would ask for him to say it and he would look like he was thinking about saying it but then when he couldn’t muster up the word he moved on and didn’t say it.

I told her that he seems to do that with a lot of words that he has said but wont say again. (which is what led us to search out early intervention.) Concerned she started to do more work with him. She pulled out a bag full of farm animals and proceeded to play with him. Watching as each time I’d encourage him (as per instruction) as to what each animal was. “Oooh Gunner, look at this! What animals is this Gunner? Can you say Cooooow  Gunner?

You could see that each time I would ask that he’d shy away and avoid talking with us. That concerned Sue. So we stopped asking what each animal was and just proceed to keep playing and saying “here is a cow, hello cow!” “Here is a chicken Hi, chicken!” using the sign for each animal. When we did this he opened up more and began to try and make the sound of each animal.

But as he tried to make the sound of each animal (that he didn’t already know) you could see that he had to concentrate more. Like he was trying to force his mouth to say the sound his brain knew. This concerned Sue even more.

She did more activities with him and at the end of the session she said. “It could very well be that Gunner has Childhood Apraxia Of Speech.” She explained that his brain knows what he wants to say but its mixing up the signals that go to his mouth muscles which causes delays in saying the word. Which is why when he is asked to say a word he gets frustrated and chooses not too. Because he wants too but physically cant.

She told me that if this is what it is. It will be a hard road. That it will take time and effort. And all that we can do now is continue to sign and continue to work with him but instead of asking questions like we were, instead we tell him what things are. So we’d say (as Gunner points to an animal in a book.) “Yes, Gunner that is a COOW. The COOW says MOOO” Instead of saying as his points to the picture of a cow. “What Gunner? What is it? What do you see. A ___”  wait to see if he says it.

She told me that hopefully it is not what she thinks and that by 2 1/2 a magic light will turn on and his brain will click with his mouth and he will start saying words. But more than likely once he is 3 we can start working more on the Apraxia. That they wait until 3 to start working because it is intense therapy and that the child needs to be able to handle the work that needs to be done.

We ended the session with tips on what I need to do more on with him. And that was it.

She left and I felt scared.

What will happen if it is that? So I Googled it. Read about how it effects children, how it could delay not only speech but reading, writing, school etc. How kids struggle and how its hard to diagnose.

I cried.

No one wants there son or child to have to suffer on any points in their life. Ever. And here is my son, whose sweet, funny, outgoing, a pistol. Who could possible live in a hard quite world struggling daily to communicate with us, with anyone. That he will have to work hard to just be able to say what he needs, to have a voice.

So I called my mom. Who listened and reassured me. I facebooked it and had people tell me their stories about how it will all be fine. So I started to feel good about it. That it will be fine. Then a cousin sent me this post. Which led me to blogs and websites and Facebook groups. Where I stayed up late reading more on apraxia.

I went to bed overwhelm, worried, hopeful, concerned and I woke up today empowered to be my son’s voice. Although he is still “too young” to be fully diagnosed. I am now convinced that he indeed has it.

So instead of waiting I am going to be doing.

I joined the groups and got the apps they recommend. I will read the books they suggest and I will work hard with Sue to make sure that my son has a chance.

I know that when we see Sue again in a couple of weeks that she will be on the same page with me to work with Gunner until he can be included in the 3 year old intense classes. And that she and I will be able to get him where he needs to be. Because of how much she repeated over and over on how it could be this, how hard it will be and how we need to be ready.

And even if that magic light comes on at 2 1/2 doesn’t mean that I won’t stop being that voice for my son but until then I will enjoy the little words he does have and love him with the same force I have. Because he deserves the world and more.