Wednesday, November 27, 2013


WOW a year ago I was getting ready to push as Hunter, my father-in-law, mom, dad, and I anxiously waited to meet our little miracle.  There was so much known. Up until this point I was able to keep Christian safe, but after he was born, I no longer could protect him.  He came out within 15 minutes and was perfect.  I loved him so much as soon as I saw him. I could not imagine a life without him in it. The realization set in that I might not get to watch him grow up.  Christian was immediately taken 30 miles away to a different hospital.  So I got to meet this amazing little person and then he was taken away from me.  It was awful.  I remember crying myself to sleep that night. I was so worried.  I wanted him to be healthy.  I remember that night like it was yesterday.  My mom was sleeping on a pullout bed in my recovery room. I couldn’t sleep, I laid there crying and pleading with God.  I wanted Christian to be completely healed.  It was so hard being away from someone you carried for 9 months.  I briefly got to hold him before he was swept up to the ICU before being transported, but that brief minute wasn’t enough.  It was heartbreaking.

In one year I have never felt so much pain, frustration, and exhaustion as I did this past year, but I have also never felt so much love, joy, or complete happiness.  This year was known, we did not know if we would even get to celebrate a 1st birthday.  Now Christian is 1 and I am just in awe of where the year went. It has been such a whirlwind.  We have had ups and we have had downs, but this little one year old has taught me more in one year than I have learned in my 28 ½ years of life.  I have learned that things can always be worse. I have learned that children are resilient. I have learned that I can be strong, especially if strong is the only option I have. I have learned that God has a plan even if it is not exactly the plan I would want, His plan is so much better.  I have learned that when given trials, it is not until we completely give it to God that He will intervene.  Sometimes He makes us hit rock bottom so that we realize we need him to lift us out. 

I get to be the mother to a superhero.  Christian has been through so much in 1 short year than many have been in their lifetime, but that has not changed him a bit.  He is a little amazing miracle that brings joy and happiness, not just to his family, but to many others that follow his story.  He has a personality that can melt the heart of the Grinch.  He is amazing which does not even begin to describe just how wonderful this little boy is. 

During this holiday season remember it is not the presents or getting the best deals.  It is about being with family and enjoying every minute with them. Don’t look at the negative, instead count your blessings.  Remember God has a plan for your life just like He did for Christian.



Tuesday, November 12, 2013

A year ago today.........................

Today marks a year ago that our world was turned upside down.  Thinking back I can still remember the emotions I felt; the emptiness, the helplessness, the complete devastation.  The perfect healthy child I was carrying for 37 weeks was all of a sudden missing half of his heart?!  How was this missed? I remember coming home and staring at the wall just crying.  I wanted to wake up, after all this was a nightmare, it was not real. I remember thinking back on every single thing I had done during my pregnancy, was it something I did?  Was it something I had done in my life and I was being punished?  Why us, why my baby boy?  The whys set is, and the research started. The joy we were supposed to feel was gone, no longer did we feel happiness, we felt sadness, fear, and were just numb.  It was the day that would forever change my life.  I never would have imagined one of the worst days would turn out to give us such a blessing.  I thought God had left me alone and that He was punishing me.  God only gave me a trial that made me realize how strong HE could make me.  What a difference a year makes…….
November 12, 2012
November 12, 2013

Tuesday, September 10, 2013

Every storm ends with a rainbow......

In this crazy life we are given tests, challenges, trials, etc. we are not given these because we are being punished, but because it is part of a bigger picture. Not just a picture, but a masterpiece. A masterpiece that God himself has painted for each one of us.

When we first found out about Christian I thought of every possible thing God could be punishing me for. Then BAM! I didn't think it could get worse and it did, the words heart transplant escaped the doctors mouth. What did I do, God? There is no way I deserve this, my son is innocent how can You do this to him. The rain kept falling on my little family and lightning kept striking. I saw no happy ending. I saw darkness. I saw pain. I saw hopelessness. I have never felt so alone as I did during the first few weeks of Christian's life. I was in this hurricane of a storm and where was God. No where to be found, He abandoned me. 

Here is the thing about God, He never abandons you. He will walk beside you, but you have to call out to Him, trust Him, and believe this is In His control. He will carry you through the storm, if you let him, but you must call out to Him. God never abandoned me, He needed me to put my full faith in His bigger picture. In His masterpiece. See God is still painting my masterpiece and I needed to realize that. It wasn't until I called out to Him that I needed a miracle that He preformed one. Each day the rain let up and the storm died down. Christian is progressing and rocking his half of a heart. He is my rainbow that came from my storm. He inspires me daily. What we went through was hard, it emotionally and physically took a toll, but the huge storm we endured gave us the prettiest rainbow. 

I encourage you when you have challenges, trials, test, not to ask the whys, but to trust that God is painting a masterpiece, your masterpiece. I promise that every bad thing we go through has a purpose and a plan for the overall big picture God has for your life. It isn't until you completely put your trust in God though, that He can give you a rainbow from your storm and finish painting your masterpiece. 

Sunday, September 1, 2013

Life is too short...

This past week I was reminded just how precious life is. The Lord says that we are not promised tomorrow. So then why do we sweat the small stuff? I believe society has pushed this view of the "perfect and acceptable" life on us. They show us the perfectly groomed Kate and William  with baby George just days after having the baby, they show us young celeb moms that have the latest fashion and look fantastic every minute of every day. We have to have our house spotless and in order in case company comes over, wear our Sunday best with makeup everywhere we go and even if we are at home, we must have balanced meals made and ready for breakfast, lunch, and dinner. Our kids must be groomed and well mannered at every moment. News flash they have stylist, nannies, personal trainers and maids! Want to know what I figured out this week....NONE OF THAT MATTERS anyway. When we are sitting here worrying about what society and these celebrities have made the norm, we are missing out on life. So what if your house is a little cluttered, and you are wearing the same comfy pants you have worn the past 3 days. You know what, it is ok as long as you are spending time with your kids and making wonderful memories. 

There was a Air Force mother who's son was murdered while she was deployed. She had to come back to the states to decide to take her 18 month old child off of life support because the people she thought were responsible friends, turned out to be vicious child abusers. Sadly justice still has not been served for little Evan. 

The point is that none of us, young, old, or in between are guaranteed tomorrow. Enjoy the moments you have with your family especially your kids. There are many moms who would kill for a messy house full of laughing children. Instead of teaching your children to be perfect, teach them to love deeply, forgive quickly, and enjoy the life God has given them. Life is just too short to worry about small insignificant stuff. So go out and live! Make memories! 

Sunday, August 25, 2013

Feeling lonely

Another heart mom post recently that she has felt as though everyone who was once close to her has left her high and dry because of her son's Heart. It sadly hit too close to home. Family has been awesome. My parents come up here quit often and have not "forgotten" about us. However, we live 1500 miles from our families so the friends we make in the military have come to compensate for the times our family isn't here, which is 90% of the time. Slowly our friends have seemed to drop away.  I know a lot don't know how to act. I have had numerous people say they are scared. It hurts because we no longer get invites to friends we were once close with or phone calls updating us on the recent good news they have or any news for that matter. Instead we find out via facebook. I know it goes both ways and with Christian's appointments I get busy, but I do text back. After hanging with a baby all day I do like adult interaction :) 

People don't know what to say or how to act so they just ignore us. Cut us out of their lives because of our reality we live with daily. I just pray that for the ones that have cut us out, simply because you do not have to be reminded of what we go through daily, that you never have to go through a struggle like ours without support. Yes, our story is a hard one to swallow. It is a reality that EVERY PARENT has the chance of living. Your perfectly healthy child could have been born with HLHS! Instead of being scared and/or close minded, I encourage you to research it. It isn't the plague and although we do have to be extra careful with Christian, we still get out and do stuff. Sometimes we won't because he is sick or someone else was sick recently and we don't want him catching it. 

Just because we went through hell and back doesn't mean we wouldn't be there for you either. Even if it is to be an ear to listen to. Truly is sad we have lost friends over our son having a defect, but we have gained some pretty awesome ones too. I love my new heart mama friends that are able to relate and talk with. Anyway that was my rant. Just be careful when you abandon friends that are going through trials, because what goes around.....

Friday, August 2, 2013

Silence is GOLDEN

Being a mother to a special little boy has been nothing short of a blessing. Although it has caused lots of heartache and disappointment, it also has renewed my faith that our God is a God of miracles and that His purpose for our life is grand. Now although I understand this, it was not something I needed to hear daily from people that were not going through or had gone through my circumstance or one similar.  So I have thought about it for a week or so debating on if I should even post, but I feel like some people need to learn when silence is golden. I know people mean well and they want to give their support and encouragement, but sometimes it does not come across that way.  Always think before you speak. These are all things that have been said to me. So here are things you NEVER say to a parent of a Congenital Heart Defect child…..


1.      “It is God’s plan.” Although yes, I am a firm believer that God has a plan and purpose for our lives and He puts us through certain situations in order to guide us to His perfect plan for our life; it is not something you EVER say to a parent with a CHD child. As a CHD parent is watching their child in pain with tubes and wires coming from every part of their body the last thing they want to hear from someone that has never experienced that kind of heartache is, “Well it is God’s plan.” Trust me it makes you want to hit someone. Although yes, in the back of our mind we know that God is in control, it doesn’t mean that it is any easier watching our child suffer.  When we found out that Christian needed a heart transplant I hated God. I hated Him for making my husband and I experience such grief and for not performing a complete miracle on Christian’s heart.  God never left me though. He took my hate and remained by my side until I called out to Him. So allow the parent to understand that God has a purpose for the trial they are going through without putting in your 2 cents.


2.      “Well it could be worse.” I mean seriously?! Why would you say this especially if you have a perfectly healthy child?  I do understand yes, my circumstance could be worse, it can always be worse, but don’t say that to me.  We were talking about funeral arrangements when we found out about Christian needing a transplant, now can you honestly tell me your first thought would be oh well it could be worse, NO!


3.      “Well at least you don’t have to go through the newborn stage.” Um yes, because I would much rather have my child’s chest ripped open then have to deal with the first tar like poop, sleepless nights, crying etc. I think any of my CHD parents can agree we would rather have our child not sleep through the night than have to undergo open heart surgery.


4.      “God only gives you what you can handle.” This statement is 100% false. We are given circumstances all the time that we as humans are not capable of handling by ourselves. God gives us trial so that we call out to Him for his guidance and help.  I would not have survived emotionally or mentally if I had not sought after God and asked for His peace.


5.      “Are you worried you might have another child with a defect?” Did you know that the defect Christian has, HLHS, has no links to what causes it.  The heart’s cells just stop forming and developing.  They have no idea what causes it.  So the chance of you having a child with a CHD is the same chance as us having another child with a CHD.  This also implies that my child is something of a burden and why would we put ourselves through it again. My child has made me love deeper and more fully than I ever thought I could for another person. It is not that I think my love is stronger for my child then your love is for your healthy child; it is that I have literally had to fight for my child’s life so it is a different kind of love. Although I pray we have healthy children because of the suffering Christian has endured in just the short 8 months of life, if God chooses to give us another child with a CHD we will fight for that child as well.


6.      “Will he be normal?” Although he will have challenges that children with whole hearts won’t he is normal. Yes we have precautions that we will need to take and that have been taken to ensure the safety of Christian, but he isn’t the plague. He will make his own limitations.  There is a girl that I have been following that is in her 20’s with HLHS and she ran track, did gymnastics, skis, and goes on roller coasters. She sets her own limitations and pushes maybe a bit more than some parent’s would allow their child with CHD, but I want to encourage Christian that he can do anything he sets his mind to like Megan has.  Yes, Christian will always be followed by a cardiologist, but that doesn’t mean he cannot live a normal life.


7.      “I wouldn’t have put myself through what you are going through.” You are implying I should have aborted my child? What makes my child’s life any less valuable than your healthy child’s life? We found out about Christian’s heart at 37 weeks, however, I would not have changed my mind to have him even if we would have found out earlier.  I feel sorry for you that you do not value human life or have trust in God. I have experienced the deepest heartache possible, but I have also experienced the most joy. When you say this you imply that a CHD child’s life is not precious and that you are not willing to fight for it. It is ignorant and very hurtful to say this to a CHD parent.


8.      “I’m so sorry.” My child has half a heart, he didn’t die. I never really knew how to respond when someone would offer these words.  I understand you are sorry that we have to endure the struggle that we do, but it does come across more negative than positive. Instead say you are there for whatever is needed. Offer help instead of offering your condolences.


9.      “Could he die?” This is very insensitive. More children die from CHDs than all childhood cancers combined. For my husband and I we enjoy each moment we have with Christian and do not think about the possibilities. I do not look up statistics. If I did I would not enjoy my child instead I would be worried about him constantly. Anybody can die at any point. We are not promised tomorrow; NONE of us are.


10.  “Could it have been prevented?” This is implying this was in some way my fault for my son’s condition. Like I stated before Christian’s specific heart defect has not been linked to anything, so it was the same odds for me to have an HLHS baby as it is yours. Putting guilt on parents like that is completely unnecessary. They have enough on their plate and probably already are thinking of everything they did during the pregnancy so they don’t need you to point fingers.


I know some people will find this post insensitive, but I find these things said to me very insensitive. Think before you speak and put yourself in the parent’s shoes. If you are not sure what to say, better just not to say anything. Remember sometimes the best thing to say is nothing at all. SILENCE IS GOLDEN.


Update on Christian: He is eating some food. I have been trying different food so that we can hopefully get his tube out soon.  He is not a fan of bottles, but we are receiving therapy now so hopefully it will improve.  He loves mini pancakes. He is also receiving physical therapy in order to catch him up on his movement development. We are just enjoying him and taking every moment in. He is such a happy little boy and we love him dearly. He truly is a little blessing!

Wednesday, June 5, 2013

Update 6-5-13

I have been bad about updating. A lot has gone on. While we were still in the hospital my grandma passed. We were released from the hospital May 20, only 11 days after Christian having his surgery. :) I then got a flight home to be at the funeral May 21. It was a whirlwind! Anyway, Christian is doing very well. His incision is healing nicely. They went back in the same incision from his previous surgeries and even the chest tube was inserted in the same scar.  The only new scars he has is little ones from his pacing wires ( they put these in all patients that just had major heart surgery as a precautionary measure). He will begin weekly physical and feeding therapy.  We were okayed to start feeding him by mouth! :) of course it is going to be a process and we will have to work up to him eating all his food by mouth and not his tube.  My goal is to get his g tube out before Christmas. He just continues to amaze us and bless us. He is an amazing little boy and Hunter and I are so blessed to be his parents.

Christian Was dedicated by Pastor Tony Evans via skype

We won first place on our shirts for march for babies

Christian loves his pups

Trying pineapple for the first time

This was Christian before surgery, still so happy

Daddy cuddles before his hemi Fontan procedure

Mommy snuggles

After surgery; during our hospital stay


Watching TV with daddy