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!                                          

Clarification regarding my last post!

After I posted my last post, I realized I didn't explain what has transpired, for those of you who do not follow me on facebook, instagram, etc. So here goes, Payten has been in the hospital since Tuesday, March 5, she went in due to high blood pressure and seizures, but she is leaving with a whole new look and less equipment. Usually hospital stays are no fun and we hate them, but this one has not been so bad! Yes, we have been worried about her having high blood pressure and more seizure and the fact that she has been super tired, but all in all it has been a very productive hospitalization. Since Wednesday, Payten has been off her ventilator and her blood gases have been perfect, yay! So, because we have found out that she no longer needs the vent, I have been pushing the issue of taking her trach out, because for so long I have been told that if it weren't for the vent, Payten would no longer have her trach. Well, today my nagging/wishing became a reality, at first they downsized her trach, then they talked about capping it off to see how she tolerated it, but when the ENT Dr. Mancuso came in to see her, he decided to skip all those steps and just jump to fully decanulation (complete removal of the trach)! Can we say ecstatic! Oh my gosh, I was crying and screaming yay all at once. I can not begin to tell you how this makes me feel and how excited I am for Payten's near future and the new possibilities it holds, because these events. I hope this clarifies any questions you might have had!

Blessings! Huge Blessings!

As I sit here and contemplate how I should begin this post, nothing comes to mind, but the word BLESSINGS. I am so very blessed. Why? I do not know why. The question why, has been running through my head all day. Why me? What have I done in my life to deserve such a blessing as this? There are so many families and children who face turmoil, hardship, grief and pain, such as ours, but what makes us special? So many go through similar things and never come out, either they live with it for the remainder of their life or they pass away, why is Payten defying the odds? She has overcome so much and defied odds in so many instances and I truly am baffled as to why. Why her? I know the Lord's hand is in everything and I know this is what he had planned for our Payten, but I want to know why? I want to know what her mission is that she needs to fulfill, for she has already fulfilled so much in her little life. She has touched so many lives and has taught people so much, that I can not possibly comprehend what is left for her to do. Am I grateful, by all means yes! No parent ever wants to lose their child or have their child go through obstacles such as this, I just don't understand why some are blessed to overcome and others not so much? And I know that I will never fully understand these things until the life here after, but I still wish I could know why.

To say I am overcome with emotion would be an understatement. To say I am not overfilled with gratitude would be ungrateful. To say I am not in shock would be wrong, for the events that have transpired are HUGE! Now, I want to clear something up before I go on. I think some of you think that the trach has been a HUGE ordeal in our families life and that is not totally true. Yes, trachs are not ideal and they do bring extra burdens that are not wanted, but they are also good things, that bring HUGE blessings. I have been grateful for the trach, it has blessed our daughters life in so many ways. It has helped her to breathe, it has helped her to grow, it has helped her to development, but it has also caused some sleepless nights, some long days and frustrating moments, but what in life hasn't brought good and bad? Most everything in life has pros and cons.

Now, recently, I have hated the trach! LOL! Not because it was difficult, rather because I have an ornery 4 yr. old who has a mind of her own and decided she no longer wanted the trach and pulled it out ALL the time! That is why I hated the trach. It was not hard to get back in, it was just tiring, because you would get it back in and it would be out again in a matter of seconds and so it took a lot of my time and energy. That is why I had a Mommy dearest melt down last weekend, because I was fed up! The only thing I can relate it to, that some of you might understand, is a colicky baby. You do all you can to soothe this child who is suffering from colic and you finally get the child to stop crying and you go to set that child down or to walk away and the child starts crying again and this cycle just keeps going and going and going, until you can no longer take it. That is what I have been going through these past couple months with Payten pulling her trach out. But to say that the trach has been a burden in our lives and this a such a HUGE blessing for it to be gone, is not totally true. The trach has not been a burden in our lives but for this short time, the other 3 yrs and 10 months have been good, yes there were moments where it was not as good as others, but all in all it was good, so I will say this, the trach has been a blessing in our daughters life, but it has come time for us to move on, for she no longer needs it and she is ready for new opportunities to be had and they can not be had with the trach, so we say goodbye dear friend, goodbye!

Never did I see this day coming. I had accepted that is was part of who Payten was. I had accepted that the trach would be a forever thing and I was okay with that, it did not bother me, for I loved my daughter no matter what. Now that I see that it is a thing of the past, I am overwhelmed with thoughts and like I said emotions. I don't know what to think. This opens up so many possibilities and I am so excited to see where this takes us. For so long, I have yearned to hear my daughters voice. I have yearned to hear her say, Mommy, I love you! And for so long I have believed that I would never hear it until the life here after and now, it is a possibility, now it is something that could happen in the near future and I can not begin to tell you how that makes me feel. It also opens up doors in her nutrition, for now she will be able to eat by mouth better and maybe in a few years have the G-Tube taken out! Which is another thing that I never thought would be a possibility and now it is. Our families life is going to change in so many ways, my brain is on over load just thinking about all the changes that will take place. We are going to sleep better, our house will to less cluttered with medical equipment and it will be quieter, especially at night! It is crazy to think about and exciting too!

I believe in miracles and I am seeing miracles happening right before my eyes and all I can think is, WOW! Payten you are AMAZING! I have a extraordinary little girl, whose spirit is stronger than anyone could ever imagine. It is by and through her strength and her faith that these things are happening. I am in admiration, here is a person who has been through so much and could have given up at any moment and no one would have held it against her, for if it were us, we would have given up long ago, but she didn't give up. She kept going! Through everything, she remained happy. Through everything, she kept a smile on her face. Through it all she fought a strong fight and now because of her strength, she has come out on top! I am beyond honored to call her my daughter. She is my hero, she is who I look up to and if I can become half the person she is, then I will have lived an amazingly honorable, good life. I have learned so much from this little girl and I still have so much to learn and for that I am grateful that I can be her mother. I try to live my life in way that makes me worthy to call her my daughter, for she truly is perfection!

Now with all this joy, comes fear. I am afraid to become too happy or excited because I fear that she is going to decline again and it will be when I fully let my guard down and that worries me. I fear that I am going to become too comfortable with these new circumstances and I am going to forget how difficult it was and then if she declines, I will have to go through all the hardship and pain again, which I do not want to relive, but I also don't want to be fearful either. I don't want to live cautiously, worrying that she could go back to all of this, meaning the vent, the trach, etc., rather I want to enjoy her life and enjoy this time and this new found happiness. So I guess that is where my faith comes in. I will have faith that the Lord's hand is in all of this and that if the time comes that she digresses, then that time comes, but for now I will live in the moment and I will enjoy and eat up what good her life has to offer now, rather than worry what the future may hold. That is so hard at times to do, but I need to do it. This is a day that I will never forget, for this is a milestone that will change my daughters life forever and for that I thank my Heavenly Father. The next triumph will be when she starts to walk and she will walk! We are getting there, slowly, but surely and that will be another amazing happenstance in Payten's life!  Life, what a crazy adventure! And these are the moments that make it worth living. Before I go I want to say thank you to each and everyone of you who have prayed for our Payten, none of this would have happened without your help through prayer, thank you so much for helping our daughter to become better and have been doors of opportunities opened. We are forever grateful for your love, support and kindness! Thank you, thank you, thank you! Keep the prayers coming, they are changing her life! I can't stop smiling and crying, what a great day this has been! I am so very blessed!

The irony of life sometimes

As I was driving home from the hospital tonight the thought hit me, I can not believe how easy it was for me to leave my daughter lying in a hospital bed. Then it got me thinking how terrible that is, how terrible a thing to be able to just walk away, no real worry or concern, just walk away and go home, attend to my other children, sleep and go back in the morning. How awful am I? I am her mother, how can I leave her so easily?

Then I thought, no, no I am not awful, rather I was forced to become accustom to leaving my child lying in a hospital bed while I go home and attend to the rest of my family. Never, though, did I ever think I would grow or have to grow accustom to this and how naive is that! Seriously, here I have a daughter who has some pretty extensive medical issues and at first I did not think we would spend as much time as we have in the hospital. I believed that once she had her different surgeries and we had all her medications, the hospital would be a thing of the past and we would just be able to handle it outpatient between her different doctors. How quickly I discovered I was wrong and that the hospital would be a major aspect in Payten's life and therefore I better get use to it and enjoy it (for lack of better words!). But never in a million years, did I believe it would become as easy as it has become to leave her and go home to attend to my other children. For ultimately, I am leaving her with strangers.

Please, don't get me wrong, these doctors and nurses have been seeing Payten since birth, so they know Payten extremely well and they know us extremely well too, but how much do we really know about them, honestly? Yes, sometimes they feel like family or really close friends, but do I really,  KNOW them? So then why is it so easy for me to entrust my daughter to their care?

 As I contemplate this, I think it all boils down to the fact that I have to, I have no other choice, I need them, Payten needs them and so therefore I have to put my trust in them and believe they have my daughters best interest at heart. I have to have faith that they love my daughter and I do have that faith in them. Now do I wish that I didn't have to do this, absolutely. Do I feel no parent should have to come to this point, yes. Do I think it is fair, no. But with all of that, it does not change my circumstance. It does not change the fact that my daughter suffers from illnesses that require frequent hospitalizations and so therefore I have to become accustom to this life and I have to love it and embrace it and trust in it and in the good people who are apart of it.

How grateful I am for Cardon's Children's Medical Center and the good Doctors and Nurses who work there. I am thankful that they are in my life and they can help my daughter when it reaches the point of helplessness and we need them to take over. I don't know what I would do if I didn't have such a good facility to take my daughter to.

So, even though at times I feel like a crap mom for leaving my daughter so easily in a hospital bed, I know I am not. I know I am doing the best I can and that I am doing what is best for my daughter. I just find it so ironic that before Payten, I never understood how a parent could leave their child alone in a hospital bed and now I am that parent! Through all of this I am learning and growing and realizing that I need to stop and put myself in other peoples shoes and judge not, because one day I might just be in their exact situation, doing exactly what I am judging them for doing. I am so grateful for these moments I have to learn and grow. I am so thankful for my daughter Payten and the beautiful girl she is and I am truly grateful for the men and women who help her daily with the things she needs and for my Heavenly Father for putting good, trustworthy, honorable people in my life who are qualified to help Payten. It truly does make it easier to trust them with her care. Life is hard, but I am learning how to love it and embrace everything that comes with it!  COME WHAT MAY AND LOVE IT, right?!?!