In life there is always a storm before there is a rainbow!

Breathing, the definition of breathing is to inhale and exhale air naturally and freely, to be alive! What a beautiful thing breathing is! It is something that we don't really have to think about, it just happens. Therefore it is something that is taken for granted, because it comes so naturally for us. But what happens when it becomes unnatural for us? What happens when it doesn't flow freely? What then? Most people have never had to think about this, because most people have never struggled to get a breath. Most people have walked through life breathing naturally and freely whenever and however they feel it to be necessary. Unfortunately, our daughter Payten is one that has not been granted this luxury, rather she has struggled from the moment she took her first breath and so for her may always be a struggle.

Recently, Payten was decanulated, meaning she had her trach taken away. As much as it was a joyous moment in our lives, for it symbolized strength and growth and advancement in development, etc., it was also a scary moment because of what the trach was. Before Payten had her tracheotomy, she could hardly breathe. Every breath she took was a miracle because of how hard it was. She slept all the time because she exerted all of her energy towards breathing. Her heart rate was in the mid two hundreds because she was so labored in her breathing that it caused everything else to be labored. Therefore when she had her tracheotomy placed, it was a sense of relief because now we had assurance that our daughter could breathe, both freely and naturally (well naturally for her!). Even though it was scary at first to accept something so foreign as the trach was, it brought so much peace because our daughter could now LIVE and have energy for other things than just breathing. It opened doors of opportunity for her in ways nothing else could. Yes, it limited her in areas of life, but the pros out weighed the cons at this stage in her young life. So instead of us focusing on all the negatives, we focused on what it opened up for our child and the help it provided her. We focused on the blessings it gave.

There is so much involved when dealing with a trach. There is suctioning, oxygen requirements, trach changes, etc. and there is a lot of equipment that comes with it too. It can make it difficult to travel, but you get use to all of the extra things and details that come with it. You get into a groove and it becomes part of you. It becomes your normal and you start living as though this is how everyone else lives. Then your child starts to become bigger and stronger, able to breathe a little easier and you begin to question if the trach is necessary. Your child starts pulling it out all the time and fights you on putting it back in. You start developing a HATE for this little device, that use to be such a blessing, because now you are having to use all your time and energy into keeping it in! So you start hounding the Doctors and questioning them on if it is necessary or not? Until they finally decide, yeah, she should be fine with out it. And you are ecstatic because now your child can breathe on their own, your child can be like everyone else when it comes to breathing! You think about how easy it is going to be not having to suction all the time, not having to wake up during the night and put oxygen back on or hook the vent back up, not having so much to pack up just to go pick the other kids up from school, etc. You think about how awesome it is going to be to hear her voice and her cry and you think, ya! she is going to be able to go swimming and take baths, etc., but you forget one thing, you forget what it was like for her before the trach. You forget, that breathing was NEVER a natural thing. You forget how much help the trach actually gave.

I didn't fully understand what Payten's ENT Doctor meant when he said, You soon will miss the trach. I thought he was just giving me a hard time. But now I understand his words. At first, Payten did really well, no real struggle, she kept her O2 up and she seemed to be able to cough things up okay. It seemed to be easy peasy for her and I thought, WOW! this is awesome! My daughter is doing it! She can breathe! Yessss! But what I didn't realize was that she still had an open stoma, meaning her hole where her trach resided was still open, she could still breathe through it. Yes, it was harder to do, but she still had it there to use, which made breathing for her a little easier. Now a week has gone by, it has become a little harder and why wouldn't?! Breathing has never been easy, why would it be easy now? As the stoma/hole closes, Payten is having to work a little harder, she is having to learn to breathe on her own and for her that is still hard to do. Even though she is strong enough to do so, it is hard.

Let's think of it this way, let's think of bike riding and learning how to ride a bike. At first you can't just ride a bike, you have to grow, you have to development other abilities such crawling, walking, talking etc. before you can jump on a bike and go. Once you are big enough and strong enough, you still can't just hop on a bike and go! There is a process, you first have to have training wheels and even with training wheels it is scary and there are times you will fall. Then you become confident and strong with those training wheels on, to the point that you ride as well as someone without training wheels and you get to a point where you no longer need those training wheels or want those training wheels on! So you remove the training wheels and as bad as you want to just hop on that bike and go,  you can't!  Why? Why can't you? You are strong enough, you have been riding a bike for sometime now, why can't you just go and be great at it from the start? Why, because now you are having to do it on your own, now you have nothing helping you, now there is nothing but you keeping yourself up. You are having to learn how to balance and turn and keep the bike straight while peddling and that is hard! That takes time and practice, it doesn't just happen over night. That is where Payten is. We have taken her training wheels away and though she is strong enough and ready, it is still hard. It will be sometime before she is good at breathing on her own. It is going to take a lot of practice and support, but eventually she will get there.

Last night, was a night where I missed her trach! I missed everything it gave her! I missed being able to hook oxygen up to it, I missed being able to suction it, etc. Payten was struggling to keep her saturation's up and she needed oxygen, but Payten would not let us put oxygen on her. Payten is not use to having anything on her face, therefore she hates the oxygen mask and nose cannula's, but what other choice do we have when she is struggling like she this? None. We have no other choice but an oxygen mask or nasal cannula's and when she needs it, she needs it! So it was a HUGE struggle to keep her from tugging on these different things that we were trying to place on her face. A struggle Joseph and I were losing, but couldn't give in or up on! So we had to hold the oxygen mask there until she was asleep enough for us to place by it her and that still was not enough, we kept having to get up and adjust the mask according to where she had moved, etc. It was very tiring and hard, but we had no other choice, we had to do it for our daughter. I kept thinking to myself, oh gosh! She is not ready, she can not do this, we need the trach back in, but it was too late! The stoma has closed and it would now require surgery, which I am not willing to do, unless it is ABSOLUTELY necessary. All these thoughts and emotions sent this Momma into a huge break down/sobbing fest, thinking that I was a horrible mother, who had made a horrible mistake for her child and because of that mistake, that child was now suffering the consequences!

 I ultimately at that moment, forgot about the process. I forgot about how in life there is always a storm before there is a rainbow. I forgot that there is always struggle before there is strength. So even though she is struggling now, meaning she is needing oxygen at night and having a hard time handling her secretions, the time will come where she will not need this support, the time will come when she will no longer struggle. For she will have had enough time and practice that she will be able to breathe on her own! I just need to be patient and strong and helpful and supportive, while she is learning/going through this difficult process of breathing. I need to remember that it is okay that the trach is gone, I need to remember that she is strong enough to this, I need to remember that she just needs time to learn and that I am the one who has to help her through this learning process. I need to stand by her and hold oxygen up to her when she does not want it held up to her, etc. I have to be her rock right now while she still struggles to breathe without her training wheels, aka her trach!

Does it mean I may not sleep right now, yes. Does it mean I may lack energy, yes! Does it mean I may be an emotional wreck for a short time, yes! But in the end it will be worth it! In the end her breathing will be as natural as yours and mines breathing is! It is just going to take time and getting use to on her part and it is going to take a lot of faith and prayer on my part. Joseph and I might not like each for a little while, but in the end it will all be better. (I hope!!!!) The good things that I thought about at first, hearing her cries and her voice and being able to take her swimming and giving her bubble baths, etc. will come, but we have to go through the process. Step by step, line upon line, precept upon precept, it will come, I just have to be patient. I just have to have faith that my Father in Heaven knows what he is doing and that he is guiding us through this and watching over our sweet little Payten. I have to have faith that my decision to have the trach removed was right and that it will get better. I have to have faith in Payten and know that she is strong enough to do this!

Oh how hard that is! I am her Mom and I don't like to see her hurting or struggling. And it is even harder right now because I am tried and emotional and I want it to all be easy peasy and it's not, it soon will be, but right now, it's not and I hate that! I want my daughter to not have to struggle and she is. I want to take this burden from her and I can't. I want what most every other mother has, a child who can breathe easy and right now I don't! Eventually I will, but I want it now! I don't want to have to go through the process, but I have to and that is hard for me.  I have to have patience and that is hard as a Mom to have, but I am learning and growing and becoming more patient each day. Payten is helping me to learn this life lesson. She is teaching me to be strong, faithful and patient! Even though right now it is hard, I soon will see the rainbow! I am just having to go through the storm and as difficult as that may be, I have to keep in mind that it will all be worth it in the end! Please pray for me and my family that we can all make it through, happy, healthy, strong and a live!!!! (LOL!) I want to say, Thank you, all of you, for your love and support, it truly does help us during times like these! You are a blessing in our lives that we can not live without, thank you for that! Take care and God bless!