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 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!


Monday, November 24, 2014

Linked in love- an auction to benefit Children's Miracle Network

I AM SO EXCITED! Children's Miracle Network has helped us out so much in the last 2 years and I felt like it was time to give back. I have been putting together an online auction that will start on December 1st, run for 2 weeks, and end on December14th. Follow this link to get to the auction.

Here are the step by step instructions for you, so you can join in the fun!
  • Go to the Linked In Love auction web site. 
  • Over on the right side of the screen is a place for you to register. This only creates an account for you so you can bid on items. This will NOT send you spam! This will also give you the option to receive texts or emails when someone has outbid you on your favorite item.

  • Then you will want to click on the tab "View Auction" to see all of the great stuff you can bid on.
  • Once you have looked through everything and picked out your favorites, you need to SHARE it with as many people as you can. This may sound counter intuitive because you want to win the items, but this is a fundraiser for the kids so we want as many people to know about it as possible.
I want to thank everyone that has donated items for people to bid on and took time to make the logo for this event. I also want to thank YOU, for taking the time to look at the auction and for helping me get the word out about it. I CAN NOT DO IT ALONE!  I need you. This will only be a great event if everyone gets the word out about it, so again, Thank You! My hope is that we can raise enough money so every child that is in the hospital over Christmas (and through out the year) can reap the benefits of the great work that CMN does.

Monday, November 17, 2014

World Prematurity day


Baptized right after birth

On this day, as I hold my 2.5 year old son, I feel his weight. I feel his breath on my neck. And I remember. In honor of all of those parents that are waiting to hold their baby, or that never got to, I am writing this. 

Our son was 5 weeks early and was in the NICU for almost 2 months. It was a very Hard Season of Life. It was full of so many up and downs, and everything could change in an instant. I remember waiting to hold our baby. It felt like an eternity. He was so little. I also remember holding him for the first time. It was awkward, but it felt wonderful. I never wanted to let go. I wanted to feel his weight. I wanted to let him know that HE MATTERED and that I was never going to give up on him. I couldn't hold him long because he couldn't handle being out of the incubator for very long, but it was the first time I really felt like his mom instead of a bystander that just came to visit.

I remember everything that the nurses and doctors taught us. I remember just staring at him through the clear incubator. I remember how happy we were when he finally could be in room air. When his little body was big enough to hold it's own temperature and we could touch him. I remember.
First time holding our son

Our view for about a month

I want you to know that your time in the NICU will change who you are. Whether it was a few days or a few months, it will affect you. You will speak different (actual vs. adjusted age). You will remember your time there. You will want to hold your baby more. You will realize just how precious life is. You will want to treasure every moment of your time with your baby. You may hate your life at this moment and think it is not fair, but this is just a short time in the whole realm of things, and it will end soon.

I want you to just breath. Take a step back and let all of the stress just fade into the background. Just look at your baby. Just hold your baby. Or just remember your baby. Your baby matters. Your baby is precious. Your baby is perfect in God's eyes and came into this world at just the right moment. Remember that you are not alone and you can find support...or give support to someone else. Let's talk about it.

Spread the word about World Prematurity Day!

Saturday, November 15, 2014

My Facebook family

Let me tell you about this great group of people I was introduced to earlier this year.

I was added to a Facebook group after one of their members saw a blog post of mine. All of the members of this group have/had a child with x linked hydrocephalus (L1CAM). I thought we were the only ones and it turns out there are over 150 families in this group! They are from all over the world and I was fascinated. I got about 3 hours of sleep that night because I was so excited and just kept looking back at all of the posts and documents that told how old the kids were or where they were from. I finally felt good about what our son has. I finally had somewhere I could go to find support. I finally found someone that knew EXACTLY what we was going through.

Our group has become like family to me. I check it every day. I can vent about life, and praise about something our son has done that day. Either way, they cry or celebrate with me. I wish I had found them 2 years ago, but am so glad that I have them now. I only know them through the computer screen, but I love each and every one of them. I am SO EXCITED to meet some of them next summer when we are all getting together. I can only pray that everyone out there in "RARE syndrome" land can find a group like this.

We lost one of our own last week and I am pretty sure that we have all cried. This group of people were so amazing! We lifted up the family in prayer, we changed our Facebook profile pics in honor of him, and we offered words of encouragement, and wished we could have done more.

This loss has affected me so deeply. I can't help but think of our son and how long we have with him. I treasure each day we get to hold him in our arms. I love him so much I think my heart may burst and I can barely stand the thought of losing him. I am convinced that I will have to bury him someday. That is just the nature of this disorder. But today I will hold him. I will love him. And we will keep moving forward, with the support of this wonderful group.