Finding the LIGHT in darkness

I will give you the treasure of darkness And hidden riches of secret places.
-Isaiah 45:3

If I am being transparent here. I often believed that because I was a Christian that I should not endure so many hardships. "God will protect me from the bad of this world."  Well I know better, but it didn't keep me from having the thoughts.  There are times that it is extremely easy to jump to the conclusion that God is indifferent from my suffering, or my daughters suffering.

But then I read the verse for the day and I have to rethink everything. My daughter isn't suffering. Life IS fair to her. She wakes up from her naps smiling and if I could hear her, I'm sure I would hear a laugh! She had to have her blood drawn this week, there were complications, but Makayla didn't care, all she did was look as me and smile and laugh!  I could have been defeated by everything that has happened with Makayla since she was born, but I'm not.  God's intent is to bring the good out of the bad and he promises to give "treasures of darkness and hidden riches of secret places.

So I offer you this, as you begin a new week, find the "treasures of darkness". 

We leave in the morning at 7:30 to go to a Neuro Surgery appointment in St. Louis at the Children's Hospital. Makayla and I will be making this trip alone, which will be a first for us, but a much needed one to prepare for Cincinnati in July. Please continue to keep Makayla in your prayers, the beginning of the scary stuff is starting now. Pray for me to continue to find the treasures.

Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast. I will cry unto God most high; unto God that performeth all things for me. He shall send from heaven, and save me from the reproach of him that would swallow me up. God shall send forth his mercy and his truth. - Psalm 57:1-3


I am a stubborn red headed woman and I don't like asking for help. My tiredness and bad moods are the result of this. My daughters have had a stomach virus the last few days, some of which was over the weekend. Our weekend night nurse has been extremely ill, and because for so long I have trusted close to no one to watch miss Makayla, I have had very little sleep. So when I prayed for my little amount of sleep to be sufficiant, I was surprised that I had a phone call from the woman who approves the amount of hours in nursing care we are allowed to use. She gave us a total of 96 hours a week which is up by about 20 hours from what we previously had. Was this Gods answer to my prayers? Was he saying, hey stubborn girl, appriciate the help that I am giving you? I haven't thanked him for that yet, if we are being honest, I don't thank him nearly as often as I should. He is so merciful, he helps us so much with Makayla.

I received a call today from Cinncinati Childrens Hospital. We are waiting on two departments and then we will have the appointments scheduled for Makayla's new team! This should be done by tomorrow morning! I am sad to say that we will have a new ENT for a while. We really like him a lot. He and God are the only reasons for Makayla still being with us. Makayla's airway is extremely difficult. I guess I didn't realize just how difficult until we went into Makayla's 9 month appointment today. So I will try to explain it to you as it was explained to me.... Yes the ENT brought Makayla back, he is amazing, but when he was trying to secure Makayla's airway, he went in through the top tracheal ring, which is cartilage.  Cartilage doesn't heal. When people have a knee injury, it doesn't go away, there aren't enough blood vessels for accurate healing.  I was still holding onto the hope that we would be able to possibly do a dilation instead of a tracheal reconstruction. My hopes were pretty much shattered today when I was told that it wasn't possible with a cartilage damage. So although her ENT has done these before, Makayla would be the most difficult one he has ever done. And he is affraid that is something goes wrong, he wouldn't have anyone else here to help. I am still hoping that he will come to Cinncinati to help with the surgery though. It would be nice to have someone extremely confident in Mid Missouri doing tracheal reconstructions!!!  So for Cincinnati our team will consist of; ENT, Cardiology, Audiology (for balance), Plastics (cranial facial). These are all surgical needs. If the extra fluid on her brain becomes a problem, we will add, neuro surgery to the list. I am very happy about this! I see it as a new begining and a chance to have a "normal" life with Makayla. I want to give her a real bath some day (she loves water)!!!!!!

Our issues with Cinncinati, Makayla and I will be making most trips on our own. YIKES! I have to pull over, when driving,  about every 5 minutes to suction her now as it is. Can you imagine how long it will take us to make a 7 hour trip?

Thank you for all your prayers, support and those who bought T-Shirts, if you could post a picture of you wearing them, that would be great!!!

Today as a gift

Here it is again, the Great reversal: many of the first ending up last, and the last first.
-Matthew 20:16

Makayla was diagnosed with CHARGE syndrome in August of 2013.  From the day she was born we knew something was wrong, we spent 5 days in the hospital doing many tests.  Not many people know very much about CHARGE, research is happening but slowly and new symptoms seem to pop up daily.

CHARGE  is an acronym which stands for:
C-  coloboma
H-  heart defect
A-  atresia choanae (also known as choanal atresia)
R-  retarded growth and development
G-  genital abnormality
E-   ear abnormality

Makayla's specific sypmtoms are; Heart defect (Coartation of the Aorta), atresia choanae (blockage in one side of her nose), ear abnormality (cup shaped, rotated, lowered, moderate to severe hearing loss in both ears) swallowing difficulties and airway issues.  She has other sypmtoms which don't coincide with CHARGE such as a small jaw and extra fluid on her brain.  Children with a diagnosis of CHARGE syndrome have a 70% survival rate to the age of 5 years. The percentage decreases significantly with heart defects and airway anomalies.

Which brings me to the point of my post. We see on the news frequently about children, without life threatening diagnosis, that pass away due to parents, babysitters or siblings taking the childs life for granted. Children that could otherwise live a long, healthy, beautiful life.  Before I had the honor of having the opportunity to be Makayla's mother, I never thought a day would come that I would need to excersise the saying, live everyday to the fullest, you never know when it will be your last.

My daughter has to fight to live and breathe every single day.  Even with everything she goes through, there is hardly ever a time that she isn't smiling. She is so happy all the time, to the point that her brother and sister beg to be around her, touching her, holding her, wanting to help with her cares.  My children, all three of them, have already, perhaps before their time, learned how to embrace my favorite of sayings, "Today is a gift, that's why they call it a present." I don't know how many more "gifts" or days I will get with my children, but I vow to take advantage of each and every second of them. I challenge you all to do the same.

Think of it this way, if your child or spouse or special someone were to be gone tomorrow, what would you be upset about the most? Not enough pictures, memories, smiles, kisses, hugs, candy dinners, tents made with the kitchen table, movie nights, staying up late, reading books to them.  The list is endless, don't go to bed tonight with regrets.

MAKE EACH DAY COUNT! - Leonardo Dicaprio (Titanic)

Once upon a time to happily ever after.

He has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves.
-Colossians

As a young girl, my mom read and allowed me to watch the fairy tale movies. My favorites were The Little Mermaid and Sleeping Beauty. The girls that were to end up with the prince were "perfect". They had beautiful skin, a "normal" face, their ears were perfectly put on their head, their hair was flawlessly curled.

A couple of days ago, a woman who's child is diagnosed with CHARGE, received a message from someone, who probably like me, watched the fairy tales growing up. She didn't know about unperfect faces or people that don't grow flawless hair.  The lady had a terrible approach to addressing her old issues with facial deformalities.  But she made me start thinking. Before I had Makayla, before I knew of CHARGE syndrome, what did I think about people that are now like my daughter. I can assure you it wasn't "grab the pitchforks and torches" but it was different. I didn't yet see the beauty in the differences. So I cringe at the thought of my daughter going to school because I'm not sure how children will react to my daughters hearing aides or her ears being a little different or the scars she will have. I hope that she is strong enough to deal with what they will throw at her. I hope that she has felt like a princess by the way she is treated at home.  I need her to know that she is beautiful and the differences are what makes her that way.  But above all she needs to know that because of Christ, she is apart of the royal family. She belongs to the King of all Kings.  And as his daughter, she is a true princess.

She will truly receive her "happily ever after"

I hope as she goes through the throws of growing up, she remembers these things.

I saw something on facebook the other day that I loved. It went as follows.
Dear Child,
Remember, you are special because I made you.  And I don't make mistakes.
Love, God

I hope today, that this was comforting.  He made you, just as you were to be. He doesn't make mistakes. Please take a moment today to tell someone that you are happy that God made them, just the way they are.

Love in Christ.

Weeping may endure for a night, But joy comes in the morning.
-Psalms 30:5

I have a lot on my heart today that I would like to share. So bare with me through my scattered thoughts.

I am not one to jump to a, glass half full, reality.  I don't heal my pain with laughter, my husband does.  He does it so well that he stops at the appropriate time. This takes me back to the night of July 12th. Makayla had surgery that morning performed by her ENT. The surgery went smooth, they were able to shave webbing away from her vocal cords on one side of her trachea open up the side of her nose that is blocked from a thick bone and clip a tongue tie. The surgery last about 5 hours or so, they were agonizing, waiting for our 1 month old, not knowing what the results would be or if things would be better or worse than they had anticipated. She finally came out and we were able to go to the PICU where they monitored her.  Later that evening, Makayla took a turn for the worse and the doctors lost her airway when they had difficulty intubating her. I remember going to sit in the waiting room on our floor with my mother, husband and three dear friends.  Dennis didn't try to make me laugh, crack a joke or make light of the situation, my husband knew it was time for weeping and comforting. He was and is my rock.

"The people who know their God shall be strong, and carry out great exploits." Daniel 11:32

An hour or so later, to our surprise, our ENT walked into the waiting room. He had been called when Makayla was headed down hill. He came in and saved our baby girl.  She was coming back to us with some extra parts but, SHE WAS COMING BACK TO US!!!!!!!!

"You will be sorrowful, but your sorrow will turn to joy" John 16:20

Don't get me wrong, I was freaking out (on the inside) I didn't have a clue what we were going to do, how we were going to live.  This changed everything.  We ended up having to move (into a duplex and closer to the hospital), I had to quit my job and bills had to stop being paid. This is our new life.  Dennis and I are closer and stronger than we ever have been as a couple. We support each other better, emotionally.  We had to come close to losing a life and many material things to learn what really matters.

"In thee, O Lord, do I put my trust; let me never be ashamed: deliver me in thy righteousness." John 31:1

I wanted to share a video to show you what it takes to be Makayla's mom and dad. This was very hard for us at first. I'm going to be up front with you and let you know that you will see a hole in Makayla's neck for a brief moment during this video.

For all the times I am asked, "How do you do it?" this is how, and the reason why is because we will lose her if we don't.  So for all the moms and dads that think you couldn't do it. I assure you, for the life of your child, you can!

http://youtu.be/NsFpgIMxXqw

Feeding Tube Awareness Week

By God's special gift of grace given to me through his power, I became a servant to tell that Good News.
-Ephesians 3:7

When I am faced with troubles, I usually know and remember to turn to God for strength, grace, patience and guidance.  It's the small, not the large problems that get me. Not the unplanned surgeries or the fact that my daughter wasn't on this earth for a few short seconds. It's when dinner plans are messed up or my husband put the pizza on the wrack instead of the pizza pan or my children put dirty clothes on the floor instead of in the hamper.  I get so upset to the point that it overwhelms me. Those are the times that I need to remember to turn to God, not just for the BIG stuff.  I am happy that God promises to help and carry me through when times get too hard. It lets me know that I can break down and show emotions that a mom should be able to show for a daughter with health issues.  I know that I don't have to go through it alone. Often times I feel like I need to live up to certain expectations and rules. Bottom line is when everything seems to hit the fan, I should be turning to God and asking for help instead of trying to figure out what I can do to fix it. (Yes that's right, I thought it was my duty to fix problems.) What I realize now is, when I try to fix them, the problem gets worse so that I am left with the only solution being to ask God for help.  And let me tell you, he always pulls through in one way or another.
As I look back on the last 8 months of my life, I recall so many times when I was faced with challenges, and although grace was right there, I didn't always reach out and receive it. Instead I desperately held onto my own agenda. When I finally had enough and let go of it God was there waiting for me.

The last few days have been a testimony to me hanging onto my own agenda.  We had a swallow, g-tube and colon study done today. We discovered that Makayla is still not swallowing and she is aspirating food that comes to her through her g-tube. I have made a decision today to give it to God and receive his grace. It is not in my control and he can take much better care of her and my plan would get in the way and possible make it worse.  

We are going where???

Makayla has been junky for about a month now. She has went through two series of Antibiotics and still wasn't normal. I talked to her pediatrician on Friday afternoon and he spoke with our ENT which suggested we come in today. But with Makayla being junky and our nurse being off this weekend, Dennis and I got very little sleep. I probably suctioned Makayla 100 times per night.  We got the appointment scheduled for 2:00 this afternoon. Her ENT scoped her tracheostomy and nose. What we found was that at this time was a lot of secretions but not an infection. We discovered that she is still refluxing (even though she is on medicine for it) and she is aspirating either her food, or her stomach acid.  I thought with the nisson, we wouldn't have this problem anymore, since this was the reason we were hospitalized, had surgery, and ended up with the tracheostomy back in July. My poor baby girl. We are having a swallow study and a G-Tube study done on Wednesday to confirm what the scope found. We also have an antibiotic on hold so if her secretions start to get darker green again, we will have some help. This will be a more long term antibiotic and it is used very often in patients with Cystic Fibrosis. So now comes the BIG news:

We are going to Cincinnati. The Cincinnati hospital is the best for people with CHARGE syndrome. Since her surgeries are fast approaching, it was suggested that this would be the best place for her. Being in a place that doctors communicate with each other, instead of me doing the communicating, a place that doctors are knowledgable about what is best for our daughter instead of the research being done by myself and all appointments will be on the same day every month! I will always want to know what is going on but I don't want to have to make all the important decisions for her. I'm her mom, I have emotions. I will never be the one holding the knife but when I make the decisions it feels an awful lot like it. We don't know for sure yet when it is going to happen. Makayla's medical information is being sent to them in the next couple of days. What I am excited about is that our ENT has agreed to do her tracheal reconstruction and fly to Cincinnati to do it!!! He also studied with a lot of the doctors there which lets me know he can help me pick the best ones. 

I am nervous. Today was a huge bomb dropped on us, all the way around. I have no idea how we will get to Cincinnati, how our other two children will be taken care of, how we will afford hotels and bills here at home. Please help us by praying for a solution so that we won't have to stress out about all of these things and we will be able to be parents to Makayla and be there to hold her hand when the surgeries are done. Also Dennis and I are so tired and emotional. I think the weight of everything has finally gotten to us.