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

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