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.
Wednesday, February 19, 2014
Sunday, February 16, 2014
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
-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
Wednesday, February 12, 2014
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.
-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.
Monday, February 10, 2014
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.
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.
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