A Window to His Love, that is indeed Payten's Life!

For the past four days, I have never felt more alone,yet more loved, more angry, yet more peaceful. I guess that is all part of the emotional roller coaster that I face being the Mother of Payten. Payten has has had more love shown to her from others this hospitalization than she has in awhile and I believe it is probably because I expressed my fears about losing her. Her night nurse Fifi came and served her by bathing and cleaning her and I have never felt more love shown in one gesture than at that moment. For at that moment, I was reminded of when Christ washed the Apostles feet and when they asked him why he washed there feet he said,"If I then, your Lord and Master, have washed your feet; ye also ought to wash one an others feet. For I have you an example, that ye should do as I have done to you." And I truly believe at that moment Fifi was acting as a disciple of Christ and following his example through serving Payten by washing her. What a tender teaching moment that was for me, I will never forget the love that was shown through her kind gesture in giving my dear Payten a bath. We need more Fifi's, I need to be a Fifi and serve others in as selfless of a way as Fifi served Payten.

 I also feel that Payten has taken the opportunity to show her love for her family and friends, more so during this hospitalization then any other she has had, by hugging them and smiling at them when they have come to see her. Since she has been in the hospital these past four days, she has been in allot of pain and she has been extremely lethargic, but there have been moments and yes they are becoming more often everyday, where she will smile at someone and give them hugs and Eskimo kisses, which she rarely does even when she is well and my feeling behind this is that she is taking a moment to show them how much she has appreciated their love and service for her and is in her own little way saying her goodbyes to them. These too have been sweet moments in time that I will cherish and never forget. But with all these lovely moments come the hard and emotional moments of worrying and grief as well and that is where I believe no one will EVER fully understand the extent of what I am facing/going through/feeling and they won't because they are not living it.

They can evaluate the situation all they want, they can read about what I write, they can look at facts and at symptoms etc., but no one will ever feel what I feel as her mother. I worry that people think I am over reacting and I shouldn't, I should not care what others think. I know what my mother instinct has tole me, I know the experiences I have had in these past few days, and that maybe hard for some to understand, but they are real and I will not deny them. Maybe it is hard for others to believe/understand, because they are so personal and so sacred to me. And maybe I should not have shared them. But that is not who  I am! Rather I am that person that wants to be as open and honest about everything in my life as I can and so I guess I am going to have critical people who look at me like I am doomsday and negative, but I will never deny what I feel at the moment I am feeling them. I still feel that Payten is fighting for her life right now, my gut is telling me she is very sick and even if she gets through this hospitalization, I have that deep down sick feeling that this will be just the beginning of a down hill slope that will just keep getting worse til the end. I know that sounds like I have given up, but I haven't! I love my daughter with all my heart, she is my life, my light and I have  given up hope for her. Rather I want so badly to do all I can to keep her here and to take all these pains and sicknesses and challenges away, but I can't. I am not God and I believe in his will and relinquishing her life over to him for he will do what is best for her.

As Payten's mother,I do my part! I take her to therapies, I work on what they work on at home, we strive for her to sit, crawl, walk, talk, etc., but we also know that, that may not be God's plan for her and we have come to terms with that. I also take her to her different doctors appts. and I give her all the medications that are necessary to try to help her to the best of our ability and I watch her closely and I take her whenever she is sick and do all I can to make her better, but there will be a time that comes that it will not work, we will not be able to fix it, we will try to do all the different things and they will not work because it is not the Will of God. It may not be this time, but that time will come and I believe it is getting closer each day. I believe that her disorder is worsening, for it is a progressive disorder, yes, we are taking the measures needed to try to stop/slow the progression, but in all cases of her disorder the measures quit working and it progressively gets worse and that is where we are right now I believe. These are the feelings I am having, that the medications are losing there effects on Payten and that her disorder is worsening and because it is a progressive brain disease, I think it is self explanatory how it will end.

 I was selfish at the beginning of Payten's life, I did not want to let her go, even though she was suffering. I did not trust in God's Will at that time, I was not to the point I am now, I was not at peace with everything, I was not ready for the Will of God to be done and I prayed for miracles. I prayed and told my Heavenly Father that I could not handle it if he took her from me. For I did not want to loose my baby and I believe he gave me that miracle I was asking for. I believe he allowed Payten the choice to stay and she loved us so much and had so much to share with us and the world that she chose to stay and shine her light for all to see. But I believe that choice of hers may be soon changing, for she is no longer as happy/pain free as she used to be, rather she is suffering and I want her to go home to her Heavenly Father if that is what she truly is experiencing and I told her that. I told her that I was okay with whatever she chose, that I would be okay if she chose to go back home to her Heavenly Father, where she would be free of all hardship and pain. Where she would be able to run free, play and laugh. Where she would transform into the beautiful butterfly she is. Every soul is great in the sight of God and Payten's is by far one of the most beautiful souls I have ever encountered and I am not just saying this because she is mine, rather I say it because it is true. Anyone who has met my Payten knows this. We all come to this earth to receive a body and to go through challenges, trials, etc. to be tested and learn life lessons that improve our spirituality and improve our souls as children of God to help us become more like he is. But Payten was not sent here for this reason, rather she was and is prefect already, she is already like God, she is indeed a Window to His Love.

I believe that she is going through all this for me to learn and grow. I truly believe that this is my families trial. I believe that Payten is here to teach us lessons that no one else could teach us and that she is doing a darn good job at it! I have hard time (at times) with this, because I know that all she really needed was to receive a body and then go home. No test was required for Payten. So as her mother, I have truly struggled with this, because it is my trial, I want her to not have to go through it for me to learn and grow.  I have asked my Father in Heaven many times, to just give me the bitter cup, give me the challenges and heartaches she has to face, for it is not her test, but rather my test. And no matter how unfair it seems, the answers always comes that, it is not HIS will. He did not make Payten stay here and face these things, rather Payten chose this life. Payten knew what she would face and go through and she wanted to face it to help me grow and learn and become better because she loved me, her mother, so very much. So my prayer is that if this indeed is becoming a down hill slope that will just bring sorrow and strife for her, that she knows that it is okay, that she go home to heaven. I love her enough to say goodbye.

I know that she has been sicker at times in different hospitalizations, but this one is different, she's suffering more I believe than she has in previous admissions and she is not getting better as easily or as quickly as she has in the past and I believe it is going get harder and harder to treat illnesses that she faces. For we learned today that the antibiotic that she has been on for the past four days has done nothing to treat her infection, for it is a very extensive infection that is very resilient to treatment and there are only two antibiotics that it might respond to. The first choice which is the best choice is not an option because it increases her chances for seizures and the second choice was started this afternoon in hopes that it will treat the infection and clear it. We will see. Fingers crossed and prayers said that it will help heal the infection and bring comfort to our little girl. Today, we met with an Infectious Disease Control Doctor and he said that it is becoming harder and harder for Payten to be treated of her illnesses because she is becoming more and more resilient to antibiotics for she has required so many throughout her little life that they are loosing there effect. He went on to say that this is an infection that can spread easily to other areas of the body and to other people around her, so we want to try to treat it as aggressively as we can so that does not happen. He is also very interested as to what the Urologist will have to say, for he will play a big role in this, because since her last  ultra sound of her kidney's, (which was a few months ago), the right side has enlarged and he wouldn't say what it could be, all he said is it could be a number of different things and the Urologist would be able to discuss with us in more detail after he is able to do his procedure called a VCUG, which is a scope that will go up inside her bladder and kidneys, to hopefully show exactly what is causing all of this. But this can not be done until the infection is cleared and the urine culture is negative. So when the Nurses and Hospitalist say, Oh she is doing so much better, she looks so much better, it is hard for me to agree. Yes, her color looks better and yes, there are times that she plays and interacts with us more, but I believe that is because they are able to control the fever somewhat and the pain, which is masking her appearance and making her look better, when in all reality she is not and that is where my concern lies.

 I thank all of you for you thoughts and prayers, I believe they have truly helped everyone one of us involved, but we are still all still struggling and emotions are high. We have cried allot, even my children have cried, which they rarely do. An example of this was last night, Makenna cried herself to sleep after seeing Payten in the hospital. Makenna told me, Mom that is not my sister in there, she is different and I want my sister back! I want her to come home so I can play with her! And all I could say was I know Makenna I do too! What a heart wrenching moment that was, I just held her as she cried herself to sleep. All our hearts are breaking, even though we are in a good place and at peace.

 Before I go, I wanted to share this song with you, it is Entitled A Window to His Love and every time I hear it I think of my Payten and her life and how she truly has been A Window to God's Love and that is why I have been so blessed to be her mother. Like I said before, I do not know her future, all I have is inspiration and feelings to go by and right now THEY are telling me to prepare myself for it is time, Payten is ready.

I want to be a window to His love,
so when you look at me you will see Him.
I want to be so pure and clear that you won't even know I'm here,
'cause His love will shine brightly through me.

I want to be a doorway to the truth,
so when you walk beyond you will find Him.
I want to stand so straight and tall, that you won't notice me at all.
But through my open door He will be seen.

A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become a window to His love.

I want to be a window to His love,
so you can look through me and you'll see Him.
And some day shining through my face, you'll see His loving countenance,
'cause I will have become like He is

A window to His love.
A doorway to the truth.
A bearer of the message He'd have me bring to you
And with each passing day
I want to fade away.
'Till only He can be seen And I become...

A window to His love
A doorway to the truth.
A bearer of the message He'd have me bring to you.
And with each passing year
I want to disappear
'Till He's become ev'rything
and I've become a window to His love

Much love, KIM MERRILL