Friday, April 8, 2016

To my special needs child: THANK YOU!

Dear sweet child,

 Thank you for saving me.
Thank you for changing me.
Thank you for opening my eyes to a world I barely knew existed.
Thank you for helping me believe that all things are possible.
Thank you for pushing me to live in the moment.
Thank you for showing me joy in the little things.
 

 


Thank you for always trying your hardest...and for pushing me to do the same
Thank you for forcing me to stop and remember what is really important.
Thank you helping me realize how important and strong I am.
 
Thank you for ALWAYS smiling...
 
 
...Even during hospital stays!
 
 Thank you for making me a better person.
Thank you for teaching your siblings how to be better people.
Thank you for showing me who our "village" of helpers are and to reach out when I need help.
Thank you for forcing me to trust God, even when it seems like he is not there.

Thank you for showing me how to live!

I love you,

Mommy
 

 
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Sunday, April 3, 2016

What I am most afraid of

There is one thought that I know is true and I am so scared. I know that others have dealt with this already and have seemed to do OK. I only hope I can be as strong as they appear to be. 

I don't think about it all day, every day...but when I do I want to cuddle up with my son and never let go.

What is this thought that I am so afraid of?

Losing my son. Having him pass away before I am ready. Knowing that at any moment he could be gone.
 


Some day I won't be able to look at his sweet face. I won't be able to hear his laughter. I won't be able to see his smile, except in pictures. No more kisses. No more cuddles. No more...

In some ways, life would be easier. No more fighting with supply companies. No more equipment like wheelchairs, standers, or feeding pumps. No more lifting our child. No more IEP meetings. No more fighting for inclusion, though still important for the rest of the world.

We will be left with our other 2 children that can walk, talk and eat on their own. We will also be left with a gaping hole in our hearts. A hole that can only be filled by one person, and that person will not be there. 

On good days I don't think about my fear; but when we have a lot of good days in a row I can't help but wonder when the next ball is going to drop. When our life will get flipped upside down.

On bad days I wonder if that is how it will end. Will the last time I see my baby be when he is in distress, fighting off a sickness, or watching his body being overtaken by seizures? Will I be able to be with him when he passes from this life into the next?

How does a person move on from that?

They say that time heals all wounds.
They say that it gets easier.
They tell you to take it one day at a time.

How does a person move when their heart gets ripped out?
How can you breathe when all of your air is gone?
How can you move on, when your whole reason for living is now gone?

I don't have those answers. I pray for those that are faced with questions. I admire those that can smile, even after a loss like that. 

I hope that when I am forced to answer those questions I can find the grace and strength to do so.   

Wednesday, March 2, 2016

Hospital stays SUCK! and 5 ways we avoided them

March 3rd
 
This date might not mean anything to you, but it is a REALLY big deal to our family!
 
This day marks the 1 year anniversary of our sons last hospital stay! 

A whole year without a single hospital stay is such a huge step in the right direction. He has gotten sick a few times in the last year. He has had a few seizures. He has had a few sleep studies (but we are not counting those as hospital stays). Even with all of that stuff he has not needed to be admitted into the hospital.

The first 6 months of his life we were in the hospital more than we were out. Every year since his birth we have been admitted at least one time for one reason or another. Sometimes a seizure; sometimes an illness, but it was always something.
 
 

I would like to say that his success is all because of our AWESOME parenting and ability to see changes in him and make adjustments to his routine to prevent anything from progressing too far, but I can't.
 
His success is due to a few things...
  1.  He is getting bigger/older and his body is stronger  
  2. We have gotten better at seeing symptoms and adjusting to his needs
  3. We have nurses whose job is to monitor him and provide treatment
  4. God didn't think we needed to be there (I usually see other peoples needs and help them in one way or another, even if it is just noticing that they are crying and offer a hug)
  5.  We have become really sheltered from the rest of the world because of the younger kids and weather.
 
No hospital stays = More time to learn other things
 

As a parent of a medically complex child, I am so proud.
My heart sings.
I know that everything can change in an instant but this last year has proven that we can make it through almost anything...and we don't necessarily need a doctor watching him over night!
 
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Wednesday, February 24, 2016

10 things no one tells you about before having kids

In typical " Know everything about raising kids even though I don't have any" fashion, I thought being a parent was easy and not really a big deal. It was just what people did. I would say things like "If that were my kid...", or "I would NEVER do that with my kid". And then I became a parent. 
 
Becoming a parent has taught me a few things so far, and I am sure I will keep learning as they get older, but the biggest one is how much love and worry you can have all at the same time. I am not really sure how people live to be old if they have had kids. My heart feels like it may burst right out of my chest every single day!
 
 
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Here are some other things I have learned...
 
1) Being pregnant is not all it's cracked up to be for some people.
 
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  Every one of my pregnancies were hard on me. Physically and emotionally. I really wish I could have enjoyed it more.
 
 
 
2) Moments like these are NOT easy!
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Seeing your baby hooked up to tubes or not feeling well is so hard. Sometimes they take it better then you do.
 
 
 
3) Teaching them to work hard and try harder are good things you should do.
And will pay off in the long run 
 
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Our oldest two work really hard to be good at the things they can do. We don't expect them to be the same but we do expect them to be the best that THEY can be! And our youngest is well on her way toward that goal too.
4) They will get messy
 
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5) They will want to try new things
 
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And give you a few heart attacks every day. Sometimes it is better to just look away and deal with whatever happens next. Hopefully they will either learn to do it better so they don't get hurt, OR learn to not do it again! Encouraging independence requires a strong mind and heart. There will be lots of yelling...at you...by your child...because they have an opinion but don't really know what that opinion is. 

 
6) The bond between siblings is wonderful and will melt your heart.
 
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If these pictures don't show love then I don't know what does! I think they all are truly obsessed with each other. I don't know if every family is like this but I hope they are. Seeing the way they love each other makes being pregnant with them all worth it.
 
 
7) Do things as a couple...without the kids.
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This is so important! You are what your kids lean on for everything. You are their rock and their stability. If you are not strong together then your kids will fall apart with you. Plus, it is good to remember what it was like before kids. Something attracted you to each other and you need to remind yourselves what that was. I also like the adult conversations. He doesn't yell at me when I don't let him carry a butter knife around the house and I don't have to remind him to not run with a "grugar". That's screwdriver, for those of you that don't speak fluent toddler.
8) Each child will test you in one way or another
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Each one of our kids is different and each one has tested our strength in their own way. Our oldest is disabled, has a lot of chronic illnesses, but smiles all the time and has the most laid back personality you will ever see. Our middle is our strong independent one. I have often said "I am not ready for this". Crawling, walking, climbing, being sassy... I am still not ready for this. Our youngest cried a lot as a newborn. It has taken almost 6 months for her to smile and do something other than cry and sleep.
 
 
9) Forgive each other.

One of the things we are constantly dealing with are seizures. Our oldest son has them from time to time and every time he has one our life gets turned upside down. We realize that our time is limited and we try to enjoy every moment.
 
 
10) All our pieces may be different, but they fit together perfectly!
 
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Thursday, February 18, 2016

I dream of a day when ALL children can talk!

I wonder...
 
What is he thinking?
 
What would he say, if he could talk? 
 
Will I ever hear more than just sounds or laughter?
 
Will I ever hear a word?...a sentence?


 When he laughs, is he remembering something fun we did that day? Or are his angels talking to him?
 
When he stares off into space, is he deep in thought about how to solve the worlds' problems? Or is he just wishing he had a different toy to play with?

Does he even know that the world has problems? Or is our family his world?

Does he understand EVERYTHING that we say? Or just smile when we tell him "I love you" because that is how he says "I love you too"?

Does he have a favorite color? Does he get scared when he can't see us? Do he get irritated by the rest of us? What does he think about the life that we have built for him? Is he thankful?

Does he wish that he had more control of his own body? Does he dream of running?

When I look at him I think my heart might just burst from all of the love that I have for him! Does he feel that way too, when he looks at me?

He may never tell me any of these things, and I am OK with that. But sometimes, I just wonder...

 
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Monday, February 1, 2016

#Projectthankful is on a roll! How are you doing?

Well we are 1 month into finding one thing to be thankful for every day! How is it going? I have posted either in the Facebook group, on my personal page, or on Instagram. I missed a few days but it didn't mean that I wasn't thankful, I just was busy and didn't go online. 

Today I am thankful for...


My oldest child! He will always be my baby, he saved my life, he is always teaching me something, and he ALWAYS makes me smile!  

What are you thankful for? Join project thankful and tell us. 😆



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Thursday, December 31, 2015

The time is NOW! Join #Projectthankful today


 


I hope you all have recovered from the holidays. It seems like they go so fast and everyone is so busy. As soon as Halloween hits we are going non-stop with "stuff". Please tell me that I am not alone in this!
 
This is going to be a challenge. This may seem easy at first. Prepare yourself for days when it won't be. I encourage you stick with it, even in the hard days. Find one thing, everyday, to be thankful for.
I want to start it off with one thing I am thankful for... (FYI, I use a lot of pictures to tell my story)

 

 


These 2 guys right here, but mainly the one with glasses and the hat on. This is my husband. We were friends in high school and started dating after we both graduated and I was coming out of a very bad, 9 year, relationship. So many things along the way were saying that we were meant to be together, but we refused to see it. After just a few months of dating we were engaged and a few months after that, we were married. 
 
We have been through so much in our 12 years of marriage. He drives me crazy, but what best friend doesn't get on your nerves once in awhile? He is a great dad, and he works hard to support our family. He bears a heavy weight being the sole income provider and worries about everything. I am thankful for this.
 
  

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