Thursday, December 25, 2014

Merry Christmas

As I sit and bask in the glow of our tree, and watch my family open their gifts, I am thinking of so many things. I am reflecting on the true meaning of this day. How God left his wonderful heaven and became human. A baby. So little and vulnerable. Sent here to die. On a cross. For OUR sins! I am letting that really sink into my soul. I am so happy because I know that I have screwed up more times then I can count. For all of the hurt I have caused, I am sorry. I am glad that someone who is so great, loves me, and forgives me. I hope this year I can try and show that same kind of love to everyone else in my life.

I am thinking about all of the amazing things that have happened this year! We have filled a jar with little pieces of paper that have all of the big, small, funny and sad times on them from the past year. I can not wait to go through those little pieces of paper in just a few days! I am feeling truly blessed for everything and everyone we have in our life.

I am also thinking of all of you that have lost someone this year. In the last several months we have been to 5 funerals. There are a few more that we didn't make it to, and a few that I only know through the internet. All of the people that are gone have left behind families. It is those people that wounder into my thoughts today. I can not imagine your pain or loss. I can only pray that you can find peace in your hearts and can enjoy the loved ones that are with you today.

From our family to yours, Merry Christmas! May the bad memories fade away. May the good memories live on in your heart forever. And may the new year bring you peace and joy!



Tuesday, December 23, 2014

The Caregivers Notebook

If you are a caregiver, you NEED this book! It was carefully written by Jolene Philo and it has EVERYTHING you need! It is just the right size to fit into almost any bag. It has a 2 year calendar. It has a place for emergency information, contacts, medications, daily routines and also has a whole section of different resources you may need in your care-giving journey. Besides all of that, it also offers words of encouragement that will keep you going, even on your hardest days.

The best part of this is that I am GIVING one away! All you have to do is go to facebook.com/xlinked1, and "like" the page! When it gets to 400, I will pick a winner and be contacting you for your address so I can get this great book to you! This would be a great way to start the new year as a caregiver!

Here is a sneak peak of the book.....




If you want a chance to win this book just head on over to facebook.com/xlinked1 and "like" the page. If you already "like" it, then share it with your friends. Anyone that "likes" it will be entered, new and old.

Saturday, December 20, 2014

I am humbled...again

This journey that we have been put on has humbled me many times. I am constantly being reminded of things I don't know and just how new to this world that I really am. Today was no exception. But it is a good thing that I am a quick learner and I am excited to learn more! I am also very excited to pass the news on to YOU!

I learned about this FREE event that was going on in our town from a friend. It was only for handicapped kids and their immediate family. We called ahead to register and got to see "Penguins of Madagascar" It was a great movie and an even better time with the kids. Everything was FREE! The movie, the popcorn, the soda, and they even had gifts for the kids! We also got to meet other families in our area that had a member who was disabled. After the movie we got a chance to speak with the event coordinator. She was a wealth of knowledge and we could have stayed and talked to her all day. I got her email instead.

I would HIGHLY recommend you to check out Variety. They have locations all over the USA and if you live in Wisconsin you can follow the link right to them by clicking HERE. Or connect with them on Facebook by clicking HERE. They offer events, like the one we attended, through out the year. It is for ALL disabled children. They also offer assistance with adaptive equipment, modifying houses, communication devises, and a camp during the summer. Check them out today!


Thursday, December 18, 2014

7 stages of grief- What is it like to know your child has special needs.



Whether you have a special needs child or not, whether you just got a diagnosis or are still waiting, whether your child is a newborn or an adult; we have all heard of the 7 stages of grief. While I tried to think of words to describe what it is like to have a medically complex child those 7 stages seem to fit perfectly.

Stage 1- Shock and Denial- We got our diagnosis when we were still pregnant with our son. Every ultrasound we had brought hope and fear. We kept hoping that things would look better, but the pictures didn’t lie. Our baby was going to have lots of issues (if he even lived) and we were in shock. After he was born I remember sitting in a friends living room saying “For now, he is just like a typical 3 month old, right? None of them have a lot of head control or move around much.” They agreed but in hind sight, they were just being nice; and I was in denial.

Stage 2- Pain and Guilt- Guilt builds up when you have to leave your child in the hospital. Your arms ache to hold them and feel their weight. You feel like you are a horrible person when your child gets sick and you may even feel like it is your fault. Going back into the hospital for the hundredth time makes your heart sink deeper and deeper.

Stage 3- Anger and Bargaining- Oh the anger…So much anger. You ask questions like “Why me?” or “Why this child?” “What did we do to deserve this life?” Then you start to say things like “If you just make them better I will…” or “Maybe if I did ____ then my child wouldn’t have to go through this.” I hope this stage is short for you. I wish I could tell you that once you get through this stage you will never go through it again, but I can’t. I have gone through this stage many times.

Stage 4- Reflection and Loneliness- Life with a special needs child can be very lonely. You spend your days in a hospital or at home because your child has a weak immune system or it may be just too much work to go to the store with them. Maybe you are the sole caregiver and are forced to stay home to care for your child. People are busy and can’t make time to stop in for a visit. You may spend most of your days with your child who can’t talk or walk or communicate with you in any way but needs lots of care. This gives you lots of time to think about your situation and life. Some of your thoughts may be hateful and depressing, but they may also be warm and loving. Try to stay in the positive mind frame. Just try. That is all you can do.

Stage 5- Upward turn- This is a great stage! This is where you find a little glimmer of brightness! You may not have it all figured out but you know you will get to a better place. You know that you are doing the best you can with what you have right now. You know that if your child ends up back in the hospital that it is not your fault. You know that things may not be great or how you planned, but you will be ok. Your child will be ok too!

Stage 6- Reconstruction and working through- This is the part where you come up with a plan. It feels good to make plans for your life again, instead of being stuck in time. This is the part where you build a ramp into your home, or rearrange your house so your child (and their equipment) can have room. This is where you are determined to get out of the house and hospital, no matter what!

Stage 7- Acceptance and Hope- I hope every one of you get to this stage. I hope you learn to accept life for what it is and realize that it is not really that bad. Sure you have to get creative and have a life that is not what you had dreamed of, but there are others like you that struggle too, and you will find hope and strength in them.

Each stage is a celebration. Each new thing that your child does is cause for celebration! You will get though every stage… more than once.  You will find hope and love in this world, you just have to know where to look.



If you like this post, please listen to this sermon for our church that talks about the 7 stages of grief also!

Wednesday, December 17, 2014

That Mom

(DISCLAIMER- Now this picture is a bit extreme and I really hope that it doesn't cause to much grief. I also hope that the people involved have changed their way of thinking. I also don't know anyone in this picture.)

What do you see when you look at this picture? How do you feel? How do you think the child in the wheelchair feels? What do you think the parents of the child felt when they saw it? What about the other kids; or the teacher? Click on the picture to make it bigger if you need to. 

I see kids dressed in their finest clothes because they knew it was picture day. All of the kids on the risers I am sure were smiling, or maybe sticking their tongues out to be goofy (although you can't see because their faces are blurred out). I see a boy in a wheelchair that is smiling from ear to ear. I also see him parked as close as he can be to the other kids. I see him leaning to one side, maybe in an attempt to be closer to the group. To some, this may look like a bunch of kids getting their picture taken. All smiling (maybe). All just a bit awkward because, let's admit it, no one really likes these things as a kid.

As a mom of a child with special needs, and in a wheelchair. I see a sweet kid that is being excluded from the group. I see a kid that is smiling because he doesn't know any better. I see a kid that is leaning over because he wants to be closer to his friends. I see kids sitting where they were told to sit, by an authority figure. I see red. I can feel my face getting red and can almost feel flames starting to shoot out of my ears!

This picture stirs up a lot of anger in me. And I hope it does in you too. Only when our society, as a whole, gets mad when they see images like this, will the world change! I do not blame the kids in the picture. I don't blame the parents, assuming that they had no idea what happened until it was too late. I do blame the photographer. I may even blame the teacher who knows this child and interacts with him every day. 

I instantly become "that mom"! I see a child that was not integrated into the class. I think about the fact that next month, our child will start the process of going to a school. I think about how hurt I would be if that were my child, off to the side, by himself! He probably wouldn't care and would be all smiles; that is just who he is. He would be blissfully unaware of what what happening; just like the child in the above picture.

I am not asking anyone to completely understand. I am not asking for your pity. I am not asking you to walk in our shoes. I am asking you to open your eyes. I am calling for a change. This change starts with YOU! It starts by being sensitive to those around you. Now days we seem so caught up in our own worlds. To busy to notice one another. The next time you see a person in a wheelchair that is struggling to get into a door, open it for them. When you see a child throwing a fit in the store, don't turn away and give dirty looks. Offer to help. When you see a child; that so desperately wants to be part of a group, that they are leaning over as far as they can, ask that they be put in front and have the other kids stand next to him.

I am also asking for you to TRY and understand that when a mom like me becomes "that mom" and makes you want to run and hide, don't! TRY to understand that she is ALWAYS aware of things like this. She has walked a long road and during this walk she has been forced to learn how to fight. She has been forced to see things differently. She will try her best to not become "that mom" because she really wants to be nice. She has so much love in her heart, and she wants to share it. Some times all it takes is one person to put out the flames that are shooting out of her ears. It takes one person to say "I understand what you have been through and I will stand by your side. I will stick up for your child. I will try to see the world the same way that you see it." Some times it just takes one.

Tuesday, December 9, 2014

Rudolph the Red Nose Reinder is like my son



As I watch the old story of Rudolph the Red Nose Reindeer I can’t help put compare Rudolph, Hermey and the island of misfits to my child and all of the other kids out there that are different from the rest of the world. 

Rudolph’s parents tried to hide his differences from the rest of the group. They hid him away and covered it up. They did this for a whole year, until he was old enough to express himself. He objected the cover up and didn’t want to hide his difference any more. He ended up getting laughed at and rejected by the group. He felt so bad about not fitting in that he ran away!

This is the same sad story for Hermey the elf. Elves are supposed to love making toys and he just wanted to be a dentist. When he finally told the others, they laughed at him and rejected him. He felt so bad about not fitting in that he also ran away!

Then there is the island of misfits. Toys that have the wrong name, polka dots, or square tires. This great guy travels all over the world collecting all these toys that are not loved and brings them to the island until someone wants them. This sounds a lot like a foster parent or someone that adopts a child. Those kids (toys) are special too. They need a home too.

Rudolph, Hermey, and the misfit toys were different. The group they were supposed to feel safe in had rejected them. Their own kind had laughed at them, and were mean. The group made them feel so bad about themselves that they felt they had no other choice but to run away. While they were running they grew up and realized that their differences were what made them who they were. They learned to like who they were and decided to return home. When they got back they were still laughed at but they didn’t care this time.

What we need is for more people to be like Santa. Upon their return Santa saw their value and knew that there was a place for them at the North Pole. It wasn’t until Santa pointed out their value and worth, that the rest of the group realized it too. Santa knew that if a Reindeer had a red nose that lit up, he could see better in the storm. If an elf really wanted to be a dentist, instead of a toy maker, they needed one of those too. And all of the toys on the island; Santa scooped them up and knew that he could find a home where they would be loved too. 

More people need to be like Santa. We need to help people realize that their differences have value. We need to help them fit in and feel needed. We can’t keep going with the crowd. We can’t keep making people feel so bad about their selves that they want to run away. Will you be the one to stand up for someone and change the crowds mind? Will you be the one to see their value? Will you be the one to make a change?

Thursday, December 4, 2014

There was a boy...

Let me tell you about a boy...

This boys parents waited a long time to see him. They couldn't wait. But there were problems. The boy was sick, and his parents knew it. They prepared their hearts and home as best as they could before his arrival. They prayed to God, and asked others to pray, for a miracle.

The boy came earlier then expected, but his parents were as ready as they could be. They couldn't wait to see him! They cried tears of joy at the sight of their little boy. The boy needed lots of care and got whisked away. After he was cared for, his parents could see him again. Even though he was sick, he was perfect. They had gotten their miracle!

They had a long road ahead of them that was filled with many more tears. Tears of joy and tears of sadness. The sick little boy got stronger though. His parents finally got to hold him. In time they got to take him home with them. What a miracle!

The boy had made many friends while he was sick. Every month he had to go back to visit them. His friends all were glad to see him but didn't want him to be sick anymore. He got great care and the boy continued to get stronger!

The boys parents were so happy! They were so thankful for everyone that had helped them and prayed for their boy. There were even strangers that helped them in their time of need. These strangers donated their hard earned money to provide meals, and gas to see their son. Their money even helped the family pay household bills that had accumulated while the boys parents were not working in order to be with their son. These strangers helped the boy get a safe car seat, a wheel chair, and a special room that all of his friends set up and take care of. This room is AMAZING and is filled with lights and sounds that relax the boy. The money from these strangers also help some of the boys friends provide toys to other kids and comfort kids that are scared. The boys parents are so thankful to these strangers and the help that they provide. They have gotten their miracle!

The boys parents pray that other families can get a miracle too. The boy is getting stronger every day and learning new things all the time. He is becoming an amazing little man and the parents believe that it is all because of the strangers that gave their hard earned money. Other families can get their miracle, but not without the help of strangers. Not without your help. Please help other families by going to http://linkedinlove.eflea.ca Check out all of the items up for bid, register and tell everyone you know. Lets help the great kids that are stuck in the hospital this year. Lets give families the miracle they are looking for!