Wednesday, January 28, 2015

Making some changes

After A LOT of hair pulling (because I am really NOT an expert) I have started to make some changes to this blog.

  • I have made it easier then ever to sign up and get an email every time there is a new post.
  • I have integrated it with every social media site that I am on. Facebook, Instagram, and Google+
  • I have changed the address to www.xlinked1.com
  • I am still working on getting something FREE to every new subscriber when they sign up!

I am so excited for these big changes! I hope you are too! Stayed tuned to see what other tricks I may have up my sleeve.

Big changes to make it easier

Sunday, January 25, 2015

Our trip to the fish store

We all need a fish tank growing up, right? Well after a day of doctor appointments (really it was the fish tank in the waiting room) that confirmed what we already knew... we needed to get our old tank set up again.


X Linked fish store trip 

Both of the boys loved the big tank so we packed them into the car and headed for our local pet shop. 

It was a great time and we could have stayed there for hours. We picked out some fish to bring home and were really excited to get them home.

I would have loved to bring home that slow moving turtle but the rest of the family didn't so we left him there.

Days like these are few and far between because of work schedules, nap times, and the cold so it was a real treat. Some days it is nice to just hang out with the family while enjoying our time together.

I hope you have a great week!

Sunday, January 18, 2015

Join me.... Follow me



 
This time I want to focus on those 2 simple words, that make a simple phrase. This seems like a simple enough task. "Follow Me"...that's easy, right?

Matthew 4:19 says: "Come, follow Me" Jesus says "And I will make you fishers of men."

Luke 14:25-27 says: Many people were traveling with Jesus. He said to them, “If you come to me but will not leave your family, you cannot be my follower. You must love me more than your father, mother, wife, children, brothers, and sisters—even more than your own life! Whoever will not carry the cross that is given to them when they follow me cannot be my follower.

Matthew 16:24 says:  Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me.

John 1:38 says:  Turning around, Jesus saw them following and asked, “What do you want?”
They said, “Rabbi” (which means “Teacher”), “where are you staying?”

John 8:12 says:  When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

Jesus tells us time and time again to "Follow Me" yet this is the biggest struggle in life.

WHY?

It is so hard because it goes against everything that this world has taught us. We are taught, from little kids, that more is better. You HAVE to have this thing in order to be loved. You shouldn't have to struggle...ever. If you just do this then life will be easier. 

This world is also consistently telling us that we are not good enough. You are too fat. You are too short. You are too skinny. You are too tall. Your house is not big enough. You don't drive a fancy enough car. You don't make enough money. Your face isn't perfect. 

The answer
 
Leave EVERYTHING behind, take up your cross, and FOLLOW ME. What does this REALLY mean?
It means taking the hard road. It means letting go of everything you know and are comfortable with. It means that you must give more then you may be willing to. It means you have to TRUST someone that you have never seen. 

WHAT?!?! Wait a minute! I have a hard time trusting the people in my life that I can see with my own eyes. Now I am supposed to trust someone who I have never met? He won't let me take anything with and he refuses to tell me the path that we will be traveling? I just don't think I can do that. I mean, I am really lost without my GPS to show me EXACTLY where I need to go and the estimated time of arrival. You can't possibly expect me to go anywhere without it, can you?

YES! That is exactly what we are called to do. It is a hard road and many have died while traveling it, but at the end of it is HEAVEN! What could possibly be better then that? And the best part is that we are called to bring as many friends as we can along on the journey! We are not called to bring our GPS, our car, or our guilt. We are called to trust GOD and join Him in eternal life with all of our closest friends. 

Isn't that the best news you have heard all day? So here is what you have to do...

1 You have to REALLY believe that you are already loved. No matter what! He doesn't care how big or small you are. He doesn't care about what you have or don't have. He cares about what is in your heart. He cares about how you treat others. He cares about you, even if you don't care about Him.

2 If you have wronged someone, you need to make it right. If you have sinned then you need to acknowledge it and say your sorry.

3 You need to get rid of the idea that you know it all. You need to stop thinking that your plans are going to work out how YOU want them... or when you want them.

4 You need to gather your friends, link arms, and walk together in this life so you can be together in the next.

5 Lastly, you need to FOLLOW HIM... no matter what. Trust Him and His path for you. After all, He did create you from just a little cell and and you have all of the parts that you need. He might know what he is doing. He just might know more then you.






 

Monday, January 12, 2015

The life we planned

By the age of 5 most of us are playing house. By 10, most girls are starting to dream of their prince charming and looking in awe at any bride that they see. At some point in our lives we start to make a plan for how we think it should go. My plan was to get married around 21, start having babies around 23 (1 boy and 1 girl), and have a mini van by 25, and of course, have the perfect job to go to every day. 

Well surprise, surprise, I did NOT get my way. I got married at 23, started having babies at 32, I still don't have a mini van, I have 2 boys, and I was forced to quit my "job" when our oldest son was born. The one thing I never dreamed of while I was playing house and gawking at brides, was having a special needs child.

No one does. As they are playing house, no one ever thinks about the layout of the house, because someone that is living there, is in a wheelchair. No one makes a mock "house schedule" that involves going to therapy 3 times a week. No one pretends to grind food up so they can feed it to their "baby" through a tube in it's belly. (well maybe someone does, but I didn't) Having a child with special needs is never really in anyone's plan. It was never in my plan.


 

It was the life I was given. It has been a hard road but I wouldn't change it for the world! I still look back at the life I had planned and wish my plans would have worked out the way I wanted, but they didn't. 

This life that I have, the one that was waiting for me, is the one I know I was destined to live. Looking back, there were a lot of things that were getting me ready for this life. When I met my husband, when we actually got married, my work at a group home, our battle with infertility, the timing of us actually getting pregnant, the timing of our son's birth, the fact that our son is special needs, and my increased desire to write. All of these things were getting me ready for this moment. Getting me ready for this life. And it is looking good!

Maybe things in your life didn't go as planned. Maybe you had a nice neat plan like I did. Maybe you wanted kids, but were told you couldn't conceive. Maybe you wanted 1 boy and 1 girl, and ended up with 2 boys... or 6 girls. Maybe you haven't met that special someone that you will grow old with. Maybe you thought you did but things didn't work out and you have gotten divorced. Maybe you thought you would have that "dream job" by now, but you find yourself still flipping burgers side by side with some high-schooler that has no idea how hard life can be.

We all make plans for our life. We all have to change our plans when things don't work out the way we wanted. We all have to be willing to get rid of the life we planned, so as to have the life that is waiting for us. You may not be living the life you planned, or be in the life that is waiting for you, but you are being prepped. All of your struggles, pain, tears, and joys are getting you ready for the life that is waiting for you. So put your head down, breath deep, and push forward to the life that is waiting for you. Do not be afraid. What are you waiting for? What is holding you back? What star are you chasing?

Sunday, January 11, 2015

Unconditional love

What do you see when you look at this face?
1-10-15






I see love. I see a huge smile. I see a boy that won't let me take video of him because he is too busy posing for a still picture. I see unconditional love.

This boy has been through hell and back. This boy is only 2 1/2 years old. This boy is my miracle. This boy saved my life. 

As a  parent of a child with a rare gene mutation, I probably take more pictures of him then most parents take of their children. The hard reality is that we will probably end up burying him. This is both a blessing and a curse to us. I don't know what I will do when that day comes but I hope to be still caring for him, like I am now.

I take pictures like this one and download it onto a cloud drive and print it off so I will always have it to look at. I don't ever want to forget his face, his laugh, his smile. I want to always be able to look at him and remember what true, unconditional love is.

I look at him and my eyes fill up with tears. My heart swells with pride. And no matter how crappy of a day I am having, I just have to look at him and he will put a smile on my face. He has  a lot of issues, but no worries. He can't do what most kids do at his age, but he is doing more then anyone ever expected. He can't speak, but has taught me more about life then I ever imagined. He is getting heavy to carry, but I will carry him as long as I have to.

What do you see when you look at this face?   


Friday, January 2, 2015

Top 12 free Adroid apps for Special Needs Kids

Here is our top 12 apps that we use every day for our son with special needs.

1. WALK BAND- Has your choice of a piano, drums, or guitar that you can play. It also has a record feature so you can listen to your music.

2. ONE MAN BAND- Has all the instruments on one screen. Really helps with finger movement because you have to touch and hold the instruments in order for them to play.

3. ANIMAL BAND- In this app you can pick a song. Then you have to touch the screen to wake up the animals in the band and get them to play along.

4. HYPER-DOODLE- This is really fun and also encourages finger movement.

5. MAGIC ART- With your finger, you press on the screen and make a doodle. Then you pinch you pointer finger and thumb together, put both on the screen, and open the fingers. The light show is like exploding fireworks!

6. OLD MACDONALD- Choose a nursery rhyme you want to hear. It sings the song, has the words on the bottom to follow along with, and you can touch the characters on the screen to make them move.

7. SPARKLE TOY CLASSIC-  This is a great "cause and effect" app that can be used with a fist or a finger.

8. MY BABY PIANO- Learn the music scale and the alphabet all at once. 

9. WHERE'S PUPPY'S NOSE- FOR BABY- Filled with lots of fun music, you can touch anywhere on the screen and the characters will say and point out different body parts.

10. CUT THE ROPE- If you want to learn about timing, while working on finger movement, this app is great. It will also help with hand/ eye coordination.

11. KIDS CONNECT THE DOTS- This one is great for getting them to use their pointer finger and is just like the connect the dots you remember as a kid, just better.

12. ANIMALS- This is a great way to introduce you child to animals and the sounds they make. This has 2 levels of fun for growing kids.

Thursday, January 1, 2015

2014 Year in Review

 

Last year I got an idea to put all the things that made us laugh, made us excited, were important, or that we were thankful for, in a jar. I couldn’t find a jar big enough so I used a vase. On January 1, 2015 we emptied that vase and went through all of the little pieces of paper. So much had happened that we had forgotten about. This is just a few of our highlights.

January
My brother got married and expanded our family with a great gal that I am excited to call “sister”. Noelie ate 19 bites of baby food. My Hubby’s paternal Grandpa passed away. My sister-in-law came home for the funeral. Our youngest smiled for the first time.


February
Our youngest was baptized while surrounded by many friends and family and rolled over on his own. We found out that Noelie had 2 vertebrae in his neck that were fused together. Through stretching and exercise, Noelie has also successfully avoided hip surgery and sat up on his own for 5 minutes! 


March
We paid off my student loan debt. Noelie ate the most he had ever eaten at one time by mouth. Our youngest popped his first teeth through.

April
Noelie had his first seizure and life forced us to pause. It was our first (and hopefully our last) time needing to call 911 and ride in an ambulance. It lasted over an hour and took 2 different medications to stop it. We spent the next few nights in the hospital and learned all about Tonic-Clonic seizures.

 May
A rescan of my Thyroid showed that I am still cancer free!


June
I FINALLY found other families that had boys like ours! I didn’t sleep well that night from all of the excitement. The wonders of the internet never cease to amaze me. Noelie held a pen and drew his first picture.

July
We celebrated 11 years of marriage. We made a decision to try and get rid of Noelie’s G-tube. Noelie turned 2 years old and had a great party! Our youngest went from sitting to standing, on his own. 


August
I became a published author with my first online magazine article. Our youngest got his first goose egg bump on his head by falling in his crib. We went to an annual pool party with some of the NICU nurses that we still keep in touch with and now call friends. We finally got Private Duty Nurses to come into our home and help with Noelie. The hubby and I had our first date night in a LONG time, once the nurses came. Both of the kids went on their first county fair rides but seemed to enjoy bumping around on the gravel more.  


September
Noelie rubbed his eyes, for the first time, when he was tired. Noelie passed another swallow study and we got clearance to try giving him more food by mouth. 

October
Noelie colored for the first time. The youngest used a big kid cup for the first time and started to walk. Noelie ended up in the hospital for 2 days with a cold and ear infection. I went to a Women of Faith convention and got a much needed renewal of spirit with “Sisters in Christ”.  


November
Noelie started using his hands and fingers more. He figured out how to pick up blocks and toys, and then laughed when he banged them on the table. He also scratched his ear and rubbed his eyes more. 


December
The boys started to interact more and the youngest is trying to help Noelie more and more. We got off of a 2 year waiting list for state funding that will help us get things we may need in the coming years. A few complete strangers had heard our story and helped us out. Some friends came to visit and told us that they were finally pregnant after years of infertility. 



Well, I hope you have enjoyed our “Year in Review”. I can’t wait to see what our jar will be filled with this year! I wish you have a year filled with peace, prosperity, and hope. Thank you for following along and sharing your stories with me. Let’s make this year great as we walk hand in hand through this crazy life!