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!

 

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.   

Wednesday, November 12, 2014

Magazine article

I am now a contributor for another magazine!

I am so excited to become a regular contributor for this magazine. I get giddy every time I see something I wrote being put out there for others to read. Click HERE to subscribe to this great magazine and here to LIKE them on Facebook. I am just starting out in this world. For the first year I was in survival mode and was just trying to breath. Now that our son is doing better and we finally have help, I am able to seek out these amazing resources. I am grateful to find the magazines that I have. I am grateful to be able to connect with so many other families that are in this world and have gone before me. I am humbled to be able to share our story with all of you and to become a part of this great team! I look forward to sharing more with you and I hope I make all of the other parents out there proud to be represented by me. If you have any questions feel free to contact me. I will do my best to answer any questions you have. Thank you

Sunday, November 9, 2014

For all of you that are wondering

We all come to a point (or several points) where we don't know why we suffering. Life is hard and doesn't seem to be going our way. Some suffer from depression. Some cry our for help and don't get it. This week has been a mix of highs and lows for me. On the news we heard about Jillian Mccabe a mom that had an autistic son and a husband that was fighting cancer. She was at her wits end and went for walk that ended in tragedy. We also heard about a 3 year old that was beaten to death by his own family. The ones that were supposed to look after him and care for him, turned against him in the most brutal way. A bit closer to home, there is another family that has 2 boys with x linked hydrocephalus who put up a good fight this week. Sadly one of their boys lost his life this morning.

This is life! This is the hardships of this world. No matter how you feel about any of these stories the truth is that the Devil put these here, to make us throw our hands up and turn against God. If God were here and really loved us he wouldn't allow these things to happen. There wouldn't be any pain. Why do the people that get to have children treat them so badly, like in the 2 stories that made national news? How could a parent do that? These are all very good questions, of which, I don't have the answer to.

All I do know is that through our struggles the last 2 years we have become stronger people. We pray every day. We thank God everyday for SOMETHING good in our life, even if it is just to wake up and try again. God is here, just like the Devil is here. The Devil is the one that usually makes headlines. We must find God in other places. As you go about your day today, please pray for the families that have lost their children this week. Yes, I am asking you to look at Jillian and the parents of the 3 year old too. They all need our prayers. Prayers of peace. Prayers for help. Prayers for the mentally unstable. Prayers to find comfort. Hold your kids a bit tighter. Tell them that you love them. And try to find something to give thanks for today.

Saturday, November 8, 2014

Blessings in disquise



Blessings
I have a friend who has 2 boys with the same rare genetic disorder that our son has. They are on my mind a lot these last few days. Earlier this week the one boy got air lifted to a children's hospital with shunt complications. The doctors were waiting for him to be stable enough to do surgery. Yesterday morning my friend said that he was doing better. Then last evening, he had a stroke, and the doctors are not giving him very good odds of pulling through. I thought of them when I heard this song, and am writing this post in honor of them.

I am asking all of you to pray for this 13 year old boy. I know that prayer can change a situation and they need everything you got right now. I just can't help but think that it could be us; it could be our son. I know that God will do his will for this young man, and that if it his time to go then he will be in a better place. So I am asking for healing. I am asking for strength for the family. I am asking for peace, for them, in this desperate time of need. Please hit your knees and give them all of the love you can right now.

Dear Lord, Please show Your mercy to this family. Watch over their boy. Keep him close to you. Give them strength to get through this. Let them find peace in You. Guide the doctors and nurses that are taking care of this boy. Let them be focused on what they need to do and guide them to do what is best for Your child. Let this family be wrapped in Your love and know that You will carry them through. I pray this in Jesus name, Amen.

Friday, November 7, 2014

Join me...

Today something scary and wonderful happened and I would like to start doing this every week.

While the hubby and I were talking this morning, our finances came up, as the do everyday. I was starting to feel very depressed and at the end of our rope. I cried out to God, asking for help to get through this day. Our situation was weighing heavy on my mind and shoulders. I read today's entry in "Jesus Calling" by Sarah Young. It says, "My main work is to clear out debris and clutter, making room for My Spirit to take full possession. Your sense of security must not rest in your possessions or in things going your way. You must be satisfied with much or with little, accepting either as My will for the moment." WOW!!! That hit me like a ton of bricks!!! So on my personal Facebook page, I asked people what I could pray for on their behalf. My hope was that if I thought about others and what they needed, then some of the prayers I was saying for us would be answered. IT WORKED!! I had barely put the question out on the internet when one of our issues was resolved, for now. Then I got a phone call and some more of our prayers were answered! God is good!

So I am going to ask all of you... What can I pray...for YOU... today? Leave a comment below, or shoot me an email. I promise to reply with a prayer for you and whatever is on your mind today.

Wednesday, November 5, 2014

I love my smart phone

I LOVE my smart phone!
Ok, ok I know what you are thinking, "She is one of those people. Always attached to their phone. She never looks at the people around her." Well this may be true, some of the time; it is not true all of the time. Let me tell you why I love it before you judge to much. 

It makes daylight savings time so much easier. I don't have to think about changing the clocks. I use my phone for my alarm and it changes over automatically, while I sleep.

It has a camera. I don't even use my regular camera any more. ALL of the pictures on this blog and anywhere else you may have seen a picture of mine, has been taken with a phone. They have come a long way, and I buy a phone based on how good of a camera it has.

It has become my cookbook, GPS/map, calculator, spell checker, search engine, calorie counter, and steps per day tracker. It even helps me keep track of my budget and is my flashlight when I have to pee in the middle of the night. It also has things for my special needs child on it that have helped motivate him to move his fingers and rotate his head to a direction he doesn't like.

While we don't spend a lot of time in the hospital anymore, it was my life saver and lifeline while we were. While in the NICU, all we had to look at were monitors that kept track of our child's heart rate and O2 stats. Most of the time those monitors were boring or not telling us anything good anyway. It also gave us an opportunity to update our friends and family about what was going on.     

Being a special needs mom, I have become very isolated. I don't go out in public as much because it is a lot of work and has lots of sick people. My child usually ends up in the hospital when he is sick and I just can't take that risk. My phone, and social media, gives me a chance to catch up with all of my friends. I love that and may even be addicted to that.

My phone has been with me through some very hard times in my life and has kept my sanity in tact on some days. So yes, I Love my phone, and I may be one of those people you see going into a panic attack when they don't know where it is; but I will not judge you if I see you on your smart phone.

Tuesday, November 4, 2014

IV pole alternative

I wanted to get rid of our IV pole that we use for hanging the food pump on at night. The legs were really long and the pole was getting all smashed from tightening the bracket for the pump. In the home supply industry it was "disposable" and was very cheaply made. 

This is what we came up with instead. It opens up floor space and was very cheap and easy to do. I just went to the local store and got a towel rack and a hook. I also got some heavy duty screws to make sure it holds to the wall. I have to admit, I am pretty proud of this little idea, and I hope you can utilize this in your house.
Without pump
With pump and bag

Tuesday, October 28, 2014

8 Ways to help families in the hospital

We have all known someone in the hospital. For our friends and family, they know how familiar we are to the hospital and I doubt that any of them are surprised when we go back in.  
 

Here are a few ways that you can support someone that is in the hospital.
  1. Make a meal: nothing complicated, something they can just reheat. Bring it to them in the hospital or to family members still at home.
  2. Pray: This seems obvious. Actually do it though. Don't just say you are on social media. There is power in prayer.
  3. Call or text: Calling is more comforting but they may be busy and don't have time to talk. Shoot a text or email, just to let them know that you are thinking about them. Don't expect a response.
  4. Offer to help at home: Usually the professionals have things covered at the hospital, but everything at home gets put on hold. Offer to do wash, sweep and mop, or clean the bathroom. Don't judge how it looks at first, just try to make it better.
  5. Help take care of siblings: We have a few friends and family members that offer to take care of our other child every time one of them has to stay at the hospital. This means so much to us.
  6. Pack a lunch for the spouse to take to work: In our case, my hubby misses that part about me when I am in the hospital. 
  7. Ask to visit: You don't need to bring anything, just find time. Ask them first though. They may be busy. There is nothing sweeter then being able to wrap your arms around a friend in need and squeezing. Let them know that you are there for them.
  8. Offer to bring things from their home: They may have been so rushed to get to the hospital that they forgot something. If you don't feel comfortable going to their house, then pick whatever they need up at the store.

This is just a few things. The main thing is to put yourself in their shoes. What if you had to drop whatever you were doing and leave. What would you need with you? What would you forget? What would you want from your friends and family if you had a child in the hospital? What would your house look like if you dropped everything and left?

Monday, October 27, 2014

Room 353

I have been praying for room 353. We are here, again. In the hospital that sometimes feels like home. Our son has been having a temp and increased heart rate for about a week now, So I finally took him into urgent care. With his past history and being unable to explain the temp, they felt it best to admit him. I am glad that it was not as bad as the last time that life forced us to pause but still a bit scary.

To be truthful, I have been praying for this. I had been asking God for a while now to allow me time to visit a friend that is in the hospital too. With life getting in the way of that visit, He has forced me into the exact place I was hoping to go. I can honestly say, because I don't think my child is in any serious danger, that I am glad to be in room 353. I am using this time away from home to get some sleep, meet with a friend who is hurting, read, write, and catch up with old "friends" (aka, hospital staff).

Every time that we are here, from the moment that our son was born, God wants us to be here for some reason. Our time in the NICU was hard and scary, but it introduced us to some of the best nurses in the state and allowed for friendships to form that are still going strong today. Our time there also taught us how to be parents.

One of the times in ICU, I was given an opportunity to meet a woman who was visiting the room where her son died. He died in the room next to us, from an infection he got while swimming in a lake, 10 years ago. I didn't know her name. I still don't. All I know is that she was crying and that she was alone. It was her first visit. She had sunken into a dark hole. Her marriage fell apart. And she was on the road to recovery. Her therapist said that she had to walk the same painful steps that she had to walk when she learned about he son passing. She had to re-live the pain in order to heal. I was put in that ICU room, with my sick child, to notice her and to comfort her in her journey.

We are here now for some reason. I have a feeling that it is to comfort my friend, but I am not completely sure. I pray that God heals our son and that he uses me to comfort others. Everyone here is going through a hard season in their life. Let me focus on that and lead me to an understanding of their journey. Let me provide a smile or warm glance that will some how comfort them.

Tuesday, October 21, 2014

Contentment

This is where I feel most content.
 

After a weekend of rejuvenation with a bunch of Christian girlfriends at Women of Faith THIS is right where I know that I belong. It is so nice to get away. It is really the only thing I plan for all year. I come back, ready to take on the world. In this world, where women can be very mean and judgmental toward each other, it is so refreshing to be in a great big arena, full of women, and know that we are not perfect and have all been through hardships.

But it is so nice to be back home. I miss my boys something fierce. I really wanted to wake them from their slumber and love on them, but I didn't. The next morning I got a lot of snuggles in and I knew that I was exactly were I was supposed to be. I wonder sometimes, what life would be like if my oldest son was "normal". Sometimes I just wish. Sometimes I was I could take my youngest somewhere and leave him. Sometimes I am not sure if I am a good mother or wife. But then there are moments like the one in the picture. Moments that I wouldn't trade for the world. It is moments like that, where everything seems ok. I am content here. I am at peace here.I am holding on to this moment because I know it won't last long.

Sunday, October 19, 2014

Women of faith

Have you ever been so excited for the new thing and yet sad to see the old thing go away? This is how I feel after another amazing weekend at a women's conference called Woman of Faith. This is the 3rd year I have gone, and each time is a different experience
2014 group. All 38 of us!
Matthew West
 

They announced that 2015 would be their last tour! This makes me said because I have been so touched by this event. It has changed my life for the better. The first year I went, our son was just born in July with many issues and was back in the ICU, we were farmers and had to worry about milking cows twice a day, and we were living off of gift cards and handouts from friends and families. All rational told me not to go. I didn't even know anything like this existed until a week before the event was to take place! How could I pull off such a last minute thing? But God was telling me to go, and in all of His glory, He made it happen. The good friend that played a big part in me going told me, "Tracy, if God is telling you to go then you don't have to worry about your baby in ICU. Nothing major will happen while you are gone. God will protect him." and she was right (like I should have had any doubt). I went and when I came back, everything was just the same. (for any of you that has had a child in ICU, you know how quickly things can change and why I was reluctant to go 3 hours away for an over night trip)

That first year we had seats in the nose bleed section. You know, the highest point, where you kind of feel sick to look at the stage below. Even though everyone, including me, didn't really want to be up there, God put us there for me. As I listened to Angie Smith talk about her unbearable loss, I was brought to tears. She asked everyone that had ever had to bury their baby or suffered through a miscarriage, to stand up. THOUSANDS of women stood up! It is so powerful to be in a giant arena, filled with women, and see that we have all gone through some terrible event. You are not alone! All of these other women have suffered, just like you. I was hooked and knew I had to come back.

I am excited for next year because I know it will be huge! They will bring out all of the stops. They will make it better then it has ever been. And in 2016, I hope they do something to continue this great ministry. They are not telling anyone yet what it might be, but I know it will be something great. 

If you have never gone to this event, you need to go in 2015! I promise that it will be great! If you would like to meet me in St. Paul MN please get in touch with me. I would love to meet up with you!


Wednesday, October 15, 2014

Pregnancy and Infant loss

 

Today, thousands of people lit a candle for those that have lost a baby. October is the month of awareness. I am the 1 in 4. Let me say it again...1 in 4! That is a staggering number; and a great loss. 

I will never forget the first test of many that came back positive. After years of trying to conceive, and hundreds of dollars spent in fertility treatments, we were finally pregnant! I remember the joy, the butterflies, and the pure happiness that we felt with the thought of finally becoming a mom and dad.

I also remember the pain and tears when we had our first doctor visit and confirmed that we were pregnant with a blood test, only to have them say that we were already loosing the baby. My hormone levels should have been a lot higher. 

I went home in shock. We had waited so long. We were so excited. Our happiness was so short lived. It just wasn't fair. How could God give so many other people a child when they clearly were not fit to be parents but rip it away from us? We were good people that were trying so hard in life. Why did God allow children to be hurt by their parents? We would take them and love them. Why us? Why me?

To help with the grieving, we picked a gender neutral name, and gave it to our child that we would never see. The child that we were so happy to have, and so sad to lose. The pain is still there but it has gotten better.

I want woman everywhere to know that they are not alone. It is so hard to talk about. It is so scary that most people now days don't tell anyone that they are even pregnant until after the 1st trimester...just to be safe. There is such a stigma around a miscarriage. "It wasn't meant to be." "Something must have gone wrong." "You must have done something to cause this." Sure, maybe it wasn't meant to be, but that doesn't make it hurt less. It doesn't make it your fault. There are so many woman that have lost a baby or have had to bury their child. It is never easy. The pain doesn't every really go away. There will always be a part of you that is missing, but you are not alone. Talk to someone. I had no idea how many woman in my life had gone through a miscarriage, until I went through one myself. We need to comfort each other. The pain is too deep not to, and the cost is too great. 

Tonight I go to bed with each and every woman, that has suffered this kind of loss, in my thoughts and in my prayers. I hope you can find comfort in knowing that you are not alone. I pray that you are able to find peace. I wish that I could hug you and tell you that it will be ok, even though it is not fair. I wish I could bring you your favorite candy and sit on the couch and just hold you. Not talk, unless you wanted, but just be there for you. A tear running down my face because I know.