The Invisible Ailment..

"What's wrong with her?" 
"If you hadn't told me,I wouldn't have thought anything was wrong."

I can't tell you how many times I've been told these things and had to explain Caitlyn's health problems. 

It is the hardest thing to suffer or have a child suffer with an "invisible ailment." 
You often don't receive the compassion that a parent with a sick child would get. There aren't visible cuts and scrapes to kiss and bandage. 
There aren't tears that come with pain,there are tears that come with doing every day things the average person wouldn't think twice about. 
There aren't just rough patches,cause you're in the hospital-there are daily struggles and when you've climbed one mountain and accomplished one thing,there's always the next 50 things waiting for you. 
It is an invisible load that we carry on our shoulders and most special needs parent's- are so strong and don't ask for people to feel sorry for them. We just want people to understand,that just because our children are not terminal or "sick," We fight a constant battle as well. 

This is not meant in anyway to diminish the struggles of parents who have children always in the hospital, I've been there too. I mean no disrespect whatsoever. Just showing how much more attention situations such as that typically get,while a parent of a child with Bipolar/Depression,Autism,Sensory Processing Disorder,ADHD and many other things often go through sacrificing every thing in their life for their child,quietly crying when the load gets too heavy,relying on just a couple hours of respite care to squeeze in a day's worth of a to do list,always in need of relief-but rarely is it provided.

Just a few of my daughter's Invisible Ailment's-

She had severe apnea and periodic breathing,so she required oxygen till she was 13 months. 

She has hearing loss,but she's not deaf-she just always needs ear tubes in,to hear well.

She has chronic lung disease-RSV,Bronchitis,Pneumonia,Tonsillitis-We've been through it all.

She was born with a cleft palate and people would say,"Oh,Thank goodness it isn't a cleft lip;so people don't see it on the outside."

She has an unspecified eating disorder and people would always say,"Oh,her weight looks healthy." Yes,that's because up till 3 years old,she still drinks over 40 ounces of liquid through a bottle. She is given thickened liquids and many droppers of vitamins and supplements to keep her healthy. She has never in life,sustained her weight on solid food.

She has a sleep disorder. There is rarely a night that she doesn't get up and EVERY thing anyone could possibly suggest has been tried and there isn't a reason the Doctor's could give us,other than they suspect children with autism's bodies don't produce enough melatonin,therefore they don't require as much sleep as the average child or are restless sleepers.

She has a sensory processing disorder. She won't eat things of different textures or temperatures. She won't wear jeans,without a big fight. She hates even a drop of water on her clothes. She gets scared upside down. She thinks light touch is pain. She hears things much louder than you or I and gets easily overwhelmed by noises and voices. 

She has Global Developmental Delay. This doesn't mean I don't work my butt off with her,it means DESPITE me dedicating my life to her,she still has some catching up to do;though I feel after a year that diagnosis can be removed-because she has come so far.

She has autism. Not high functioning, in fact when she was diagnosed she was functioning at not even ONE percent for her age range. Everything she does now is just a miracle and a result of very long days, very great therapists, and parent's who pour our lives into making hers better. 

All these things,no one can see. No one would ever know. But my life got turned upside down by all these things. Caitlyn has to work twice as hard for every bit of progress she makes.

 I lose a lot of sleep. I juggle a lot of things. I have cried many tears. I have a faith,you can't break-because sometimes it's all I have. I have a determination,only trumped by that of my daughter. 
I have a compassion for these parents,who have one or any of these issues my daughter has,because I know a little of what their days look like. I have a passion for bringing awareness to all these invisible ailments,because they're very real and they have a very big impact on our lives.

Just the Way You Are....

Today, we celebrate love. Many people think of this day as a time to honor and cherish and lavish your significant other with gifts.

But I want to take this time to honor the caregivers of children with special needs. 

As a mother, I love unconditionally,I sacrifice all things and most mother's do this. But when you stop to think about it-just your child's smile or hug or them telling you they love you,is more reward than the average parent can imagine-when your child might not be able to give you even that back.

My daughter has come so far in the last year,but for the longest time-she wouldn't respond in any way-when I'd smile at her. She was a happy,bubbly,awesome kid-she just couldn't process that the thing to do was to return the smile. Today,as I was putting her down for a nap. I kept closing my eyes,pretending to be asleep;so she'd stop playing and go to sleep. I opened my eyes and she was still staring at me,so I smiled...and she gave me a sheepish grin back. Oh well,I say! And then we smile back and forth and giggle a little. Do you know the strength of heart and absolute pure love it takes a care giver to never stop smiling and never stop trying to win that smile back?

Earlier this morning,I'd ask her to give me a hug and she'd say, "No!" But then she'll just hug or kiss me and it's the best feeling in the world. When she finally understood affection,it meant every thing to me;because she finally knew to give a hug because she loved somebody. This simple gesture many parents might do in passing with their children throughout the day,can make the day or week of a parent with a special needs child!

And to just hear, "Mommy or Daddy." You don't know how that feels to go years and not hear an utterance of your name. You just keep loving and giving and pouring out your life,but you would give anything to hear an "I love you,Mom." Now,when my daughter pulls at me and yells my name 30 times,in every variation known to man. I can only smile and stop what I'm doing,because it took me years to hear her call my name.

Maybe your child still can't do those things and you never stop loving them. You never stop fighting for them. You never stop smiling at them. This is for you-You deserve a big hug for Valentines Day and a big pat on the back!!!!

You Call it Autism...I call it Amazing!

When your child receives an autism diagnosis, there is never just one emotion that you feel.

You can feel a death, that your child might not be able to do all you've dreamed of, for him or her.  

You can feel relief, that you finally know what's been going on and know how to help now.

You can feel sad on any given day, because your child had an epic meltdown, because you had to say no to one more activity that you knew they wouldn't handle well,because you had to pass on a family trip because your child can't handle the flight or drive. 

You can feel jealous of people with typically developing children and think how much easier their lives must be without all the work,therapy,intervention,phone calls,insurance issues,etc. that we face on any given day. 

And these feelings are fluid,from one moment to the next, you can feel some or all of these things.

 But there are some things I feel, that I want to share with you. Call it looking at the glass half full, call it unconditional love, call it Mommy's delusional! (I'm sure that's true, some days!)

I feel Joy when I look at my daughter,Caitlyn. First and foremost, she will always be my only child and the love of my life. She is my greatest accomplishment and autism didn't cloud my perception of her,my perception of autism, was affected by how amazing I know she is.

 I feel pride. Yes,we're all proud of our kids; but when you know HOW high of a mountain your child had to climb to say, "My "mame"(name) Caitlyn." Or Perhaps,how hard it was for them to tolerate the noise of you humming your favorite song. Or Maybe how amazing it is, that they tried a new food that they've always had a massive texture issue with. This is a pride that not all people can understand, because it's not the typical things you'd think of to be proud about maybe,with a typically developing child. Caitlyn has become so confident, for us always praising her;that she now tells herself, "YAY! I did it! Good job Caitlyn!"

I feel Awe,at the gift of being able to watch how she learns.
 You may tell me she is not in tune with the world around her at times, because she's been leaning over her coloring page for so long. I see utter determination, because sometimes she won't stop till the last white part of the paper is colored.

You think she's stuttering, but she's not. She's repeating herself over and over again,till you respect her and respond to her. She'll say, "Hi Sir" to a man in the grocery store over and over,louder and louder until he answers her, then she leans back in the cart with a satisfied smile.

You might see that she doesn't learn the way a "typical" child does. I say all children,of all abilities learn differently and I see a child with a photographic memory who is already starting to write at 36 months and can read all the titles of her books and sees the world through a color glass I might not understand, but she is brilliant and I know that.

You see a child that might cry when you play an instrument or sing or put music on in the car, but I know that she loves playing her own instruments and using her pretend microphone to sing and she loves classical music. I know that she can speak all the words to her favorite songs,even if she can't tolerate the music with some of them.

You see a child of 3, that's still on a bottle and give us a double glance,when we're out to eat. You don't know that she's been in feeding therapy since she was one month old, you don't know how many attempts of feeding her solid food I made that day. You don't know how hard she cries if I try to offer her the same liquid in a sippy cup, because it doesn't "belong" in there, in her mind.You don't know that she's allergic to everything on the menu at most restaurants. You don't know her story.

You might think she's a little invasive and doesn't know boundaries.But I know she's the kindest girl in the world. She wants to touch everything you're doing and explore it all. She wants you to explain your world,like Mommy explains the world to her. She wants to help hold your tools, help you water the flowers, help you feed the dogs. She might dump the dog food out every other time,because she has poor impulse control.  She might water the rocks instead of the flowers, but she still deserves to be able to help. She might touch something you didn't want her to touch, but she doesn't deserve your rebukes. She is learning about the world around her by touch and by taking a picture in her head of everything. Don't make it a bad slideshow. Be patient...

You might hear my child has autism and want to tell me sorry. You don't need to apologize, it's not terminal. It's made me love my child more than I could ever express. It's made me reach down to the depths of my soul for patience and understanding some days, but I wouldn't trade it. I've sat back and watched her every moment in life and marveled at how she learns and how she tries and how she never gives up.

Children with autism really are angel's,you see. Because there is no judgement from her,when you meet my child. You could be any race,any age,any type of personality. You could be missing teeth, you could have lost all your hair, you could be wearing clothes with holes in them, you could look anyway you want and Caitlyn would come up to you and hug you and take your hand and ask you to play with her, because in her world- There is no bad,there is no old,there is no ugly....There is just a world of people she wants to be friends with and I treasure her innocence and pure love and acceptance...

So,while you might call her autistic. I will call HER amazing,cause that's WHO she is. Autism is just a part of her story,it's not the whole book.

 

https://www.facebook.com/caitlyns.promise?fref=ts

Someone Like You....

Yes,it's a song-but no, that's not what I'm talking about...

Did you ever utter a prayer,make a declaration,or form a plan - fueled by youthful innocence and a blind trust in God? I have...and I remember it like it was yesterday and He's still fulfilling it (like it or not sometimes!)

There is a very old song we used to sing in church and the lyrics say- "Make me like you, please make me like you. You are a servant,make me one too. Oh Lord,I am willing. Do what you must do. To make me like you,Lord. Make me like you."

I am singing it as I write,because I remember it so well.I was a pretty spiritual little kid. I would have prophetic dreams,lead worship,teach Sunday School and be probably one of the only kids on my knees in the prayer room before church would start. One particular Wednesday night,when I was about 9 years old. I was on my knees crying and I told God, "I just want to be like you. I don't care what you have to do in my life or what I have to give up.I just surrender my life completely to you." (note: the absolute trust I had,that I could say this and believe nothing bad would happen.)

That's a pretty radical offering for a 9 year old and here's the funny thing-God started shaping me; and in the way He refines most of us-I was put in the fire to burn away all that was not HIM, in me. Starting at a young age,I started facing tremendous trials-abuse,abandonment,constant surgeries and failing health,constant crippling depression... (Note:I don't believe abuse and such things are caused by God at all. It is a fallen world and people make sinful decisions,but God did use it to shape me.)

I could go on and on,but as I got older,the youthful trust started to slip away and the "Why me?" started to creep in. I started bailing on my commitment to God! "No God,I didn't mean all THIS! I didn't mean for my life to never go well!" and all I wanted to do was jump out of the fire. This never ending fire that I felt was burning me alive on a moment by moment basis. I just wanted out. I lost my vision and instead of asking myself, "What can I learn from this trial,what is God trying to change in me?" I started hating God and denying His existence for the age old trip up-If God is so loving,why do bad things happen to good people?

Many of us have wondered that right? Many of us have looked at what we're going through and thought-I'm trying to do what's right,why am I being punished? Rather than looking at his refinement as His loving us too much to leave us the mess that we (unknowingly sometimes) are. Not that I could find a reason in every bit of suffering I went through,I'll want to have a talk with Jesus in Heaven! :-)

I could detail so many losses and pains in my life that brought me to the point of just being nothing,having nothing,wanting nothing; but for life to stop. But there was a part of me,that even though I outwardly denied His existence,knew I was wrong. I couldn't bear to open my Bible for years(Other than the book of Job,you don't want to KNOW how marked up that book in my Bible is!) but I would cry myself to sleep,with my head on top of it every night.

I remember the turning point,when I finally was at rock bottom and I just told God,"I don't make any promises,but help me to find you again." I was 15 years old. Since then,did my life get any easier? Oh my GOODNESS,No! It's gotten harder and harder,but something in my spirit changed.

You can spend your whole life fighting God,pointlessly arguing that your way is better or you can lay down your sword and accept a certain peace that comes with defeat. Because it's not really defeat,you weren't winning on your own.

I truly believe that all the paths that God brought me through from my youth,is what prepared me to be who I try to be for Caitlyn now. I don't want her to watch me cursing God. I don't want her to wonder why she has to face these hard things,cause Mommy always asks why.

 I want her to know that every battle you face gives you ammunition to help someone else fight theirs! I want her to look at a hardship in her life and think. "How is God shaping me to be more like Him in this situation?" 

More than wanting to help her become a kind-hearted,helpful,humble girl who loves Jesus- I want to be that person.I want to never run away from that again. I want to be able to have open hands and say as Job did,"The Lord gives and the Lord takes away,blessed be the name of the Lord!" 

Am I there yet? Of course not, I have things I am holding with clenched fists,because the world would say that my life has taught me to be cynical of God wanting a good plan for my life. But then I look at all the bad and it prepared me for now. I needed to get it out of my system-the doubt,the questioning,the wrestling with God...I had to go through it, to know that I do NOT know better. I had to go through it, to know that I receive greater peace from laying something down,then I do by fighting for it. I had to go through it,so that I would be able to look at the glass half full. I had to be broken,so that I could be put back together the way God wants me.

And right now,He wants that little girl back,that got lost a very long time ago and He wants me to trust Him enough to repeat that same prayer and hold my arms wide open and be willing to give everything and lose everything,the way that 9 year old me was willing. 

 I know too many people that have been made to feel that they can't come back to God. That they've done too many things wrong,that they've done the unforgivable,that they've turned their back on Him too many times. I have turned away more times than I could ever tell you and I'm not proud of it,but I am always comforted by this scripture in 2 Timothy 2:13-"If we are unfaithful, he remains faithful, for he cannot deny who he is."

It's never too late to trust again, it's never too late...

The Thing I Cannot Say...

There are many things that happen in my life and in my journey with Caitlyn that evoke..well,some strong reaction from me. 
But there are so many things I feel I cannot say,Whether it be politically incorrect,or perhaps it shows too much weakness on my behalf,perhaps people will think Caitlyn is in the hands of an unstable crazy person. What if people lose respect for me? What if they judge me? What if they mock me? So,for all these reasons and worries about what people will think of me,I stay in the shadows...

So,there is some thing I want to get off my chest~















I'm Bi-Polar...There I said it. Do you KNOW how hard it is to raise a special needs child,when you feel like you're handicapped yourself? I don't tell people,I don't tell almost anyone-because I don't want them to treat me different. If you thought I was wonderful and capable and balanced the world on my shoulders before I told you,what has changed? 

Now,you just know on top of my ever present challenges with Caitlyn-I fight demons in my head 24/7 that want to swallow me into the darkness and I won't let them. I drew a picture the other day of our family. Caitlyn was piglet-small and lovable. Dad was Eeyore, grumpy,but dependable(lol) and I was Eeyore,with a Tigger jumping out. Meaning,I feel that way inside-but I force what I show to Caitlyn on the outside to be bright and beautiful and full of promise!

 It is hard to describe the feeling of not wanting to be treated as a mental patient, but maybe knowing it would be a relief if people knew you weren't as strong as they thought. Maybe they'd check on you more often, maybe they'd know your continual sunny outlook might not be a full reflection of EVERY thing going on in your life.

This depression has almost taken my life a few times and it is a daily struggle to wake up feeling like a black cloud is hovering over every step I take,but then I hear my daughter's voice ,"Hi Mom!" and pull myself out of that mind frame and give everything I have to her. I've had days where I've literally curled up in a ball,sobbing that I can't be her mom anymore and telling Matt maybe I just need to go away,but knowing she couldn't live without me and I couldn't live without her. Sometimes I feel like it takes too much grace,too much pressure,too many moments where you can't breathe,too many anxiety riddled therapy/doctor sessions,too many things to remember and too many things I didn't do that day for her,that I should have and I just crack.

I have had this since I was 15 years old and I've heard everything you could possibly hear about depression and anxiety. I've been told,"What do you have to be sad about?" (Well,let me tell you!!) I've been told if you need medication,you don't have enough faith in God to answer your prayers. I've been told so many lies that complicated an already hard journey.

As soon as I found out I was pregnant,I started reading studies on how having a mother with depression, impacts a child's life. I instantly swore that somehow,some way-I would control it and not let it hurt Caitlyn. How I thought I could do that,is beyond me-I can no more control the sun setting each day-But somehow with all the struggles she brought with her,she brought enough light for me to borrow.  I have melt-downs,I feel inadequate all the time, I cry and feel like I can't face the morning-but every time I see her, something in me just sucks it up and puts it aside and I am eternally grateful that God gives me enough strength to not let it dominate her life. I just love her too much to let my sadness and pain touch her in any way.

There is this book Caitlyn loves called, "My Mom is Great" and it says, "My mom is so great,I think my Mom is Magic." Then it talks about by night,her magic starts to fade-but no matter what,she's my mom and my mom is great. If you came to my house,you'd see my magic is starting to fade by the evening. I've held it together all day,talking to Dr.'s and therapists and Insurance people and done all the cooking and cleaning and taking care of the dogs and the bills,I've done everything I could to work with Caitlyn on all the things I should and as the day comes to an end,I realize I didn't work with her as hard as I should have on feeding therapy... That she didn't take a bath...That I don't have anything to send in my husband's lunch tomorrow...that I forgot to call the Dr. for all my check-ups..that I forgot for the millionth time to take MY medicine,which helps me stay sane for HER...

"Oh Tabitha,how could you have dropped the ball on so many things? Why do you fail every day? Every single day you do something wrong!" And the exhaustion from the day creeps up on me, I start wanting to cry about everything and by the 5th time Caitlyn has knee dived me in the face,cause she wants to play rough and she still somehow has plenty of energy, I just start to cry. Then my husband asks, "Do you think she'll learn to care when people cry? Don't kids her age notice that?" And then I cry some more,cause there's one more thing I have to work on with her and my brain just can't possibly contain the thought that there's ONE more thing I have to do. Between the depression and anxiety,my head already feels just full of static-then you add on the incredible demands of my life and I just constantly wish I could sever my head from my body at bed time and just not have to think anymore!!

I am sometimes told these following top 3 phrases
(none of which help,by the way :-) 
1.Just Relax-if I could I would(of course I force myself to sometimes,but it never FEELS relaxing,cause I know I have 500 other things to do,that only I can do.)!!! 
2. Don't worry about it-Well,of COURSE I have to worry about it,cause I have to trouble shoot it,figure it out and fix it! 
3. It'll be okay-I do not always feel okay and my life is not always okay,sorry,this is not the answer! 

So,there is my secret. I am telling the world (As much of the world as you can tell,in a blog post anyway.) It terrifies me to open up,but it stresses me out more,trying to hide my struggles. I don't hide Caitlyn's,but I work so hard at hiding mine. Maybe now,I'll feel at liberty to not always have the answer,to tell someone when I'm having a really bad,depressing day and they'll understand if I can't just snap out of it. Maybe now,I'll have one less thing in my head to remember,cause I won't have to not let it slip that I'm a Bi-polar Mommy! 

In closing, if you are my friend and you see me online towards the last few hours of the day,feel free to ask me how I'm doing. Then I'll know you've read this and I'll know I can answer honestly. If the answer is honestly-I'm about to throw myself out a window :-)

 http://www.youtube.com/watch?v=iSg99iA8bDQ&list=FL-pN0IHaDQSAjrxlZePVS-Q