I need to rant for a moment

Okay I feel the urge to rant for a minute, and this feels like the best place to do it. So bare with me for a few moments.

I am sitting her right now watching my adorable daughter playing in the floor and watching her favorite Barney. She is talking and singing and so very happy and content. You would never know she is so very ill and so medically fragile right now. Or that I might have to start holding her down four times a day to empty her bladder out for her.

I am feeling so angry right now that my happy little girl will have to start such a process and that this is forever for her. I have so many questions swarming in my head about what this will mean for her and all of us. I just want to scream at the moon or something right now. I know God is in control but I currently am angry at His path. Why should such a sweetie suffer so much? Why??? I really wish someone could give me an answer right now for that.

I love my big girl so much and I just wish she could just be a kid and not a kid with medical problems. I wish our only big problem of the day was which park to go play at?

There you have it, I am angry and very confused right now. I know it will pass but for now I want to scream and fight!

Rachel

How much more can I take?

I am not sure how much more I can take right now? Emma is my life and I feel that we can not get a break for her. We know are dealing with major bladder problems. WE found out today that she is not emptying her bladder and that is why we have had all the infections. So, know we decide which of the two options we have been given we choose. Neither is great but we have no choice we have to pick one.

I am so sad for my little angel. I just wish one thing was easy to fix or not a major life change. But no such luck. So, know I will have to figure out how to make this normal for her and us as well.

We are so sad right now and in shock, but I am sure at some point we will pick ourselves up and move on in some form. However, with each time we are knocked down medically with Emma it takes her Daddy and me a little longer to pick ourselves up. All of these decisions are weighing so heavy on us and so much is going on right now it is all a blur. Between this medical problem and her school stuff i really just want to run away or scream really loudly. Or maybe sit down and cry for a little while. I think her daddy and me will have many tearful nights as we talk this out and decide.

Calgoon take me away!

Rachel

I wonder??

I have thought a lot this week on how Mary, mother of Jesus must have felt while she watched him die on the cross?

I started thinking on this as I reflected on Emma's life up till now. I always think back on her birth and her NICU stay on her birthday, which was on Monday. Plus, I think back on all her surgeries etc too. So, as I thought back on how many times I watched them take my angel away for whatever she was having done, and how hard it was to do that, I wonder how Mary watched them beat and torture her son, Jesus?

I have also had the horrible experience of watching Emma stop breathing more then once. It was the worse few seconds of my life. How did Mary continue to live as her Son laid in a tomb for three days, before he rose from the grave Easter morning? How did she do it? I really would love to sit down and talk with her and ask her how she dealt with it all. She was a strong women that is for sure.

This Easter season I am so grateful for a God who loves us and cares for us no matter how many times we stray or stumble. I am so grateful for a God who holds my daughter's life in His hands and knows how all this medical craziness will end. I really wish I knew but He does and His plan is not always our plan. God is in charge and He is full of love!

Love and Happy Easter
Rachel

I have not forgotten

I will post soon about all that is going on, but I really do not have the time currently to do so. I promise things are a little bit better. I am doing my best to focus on the good and ignore the rest as much as I can.

A new day will dawn and it will better I pray!!

Peace, love and library books:)
Rachel

Bring on the Rain

I love this photo of Emma,it is from her friends Kadence's birthday party. She loved hiding out in the "tent". I can not say I blame her right now, since we are spending more and more time at the doctors.

The other night, while starting to clean out what is suppose to be our office/art room, I heard a song that really fit my current life. It was "Bring on the Rain" by Jo Dee Mesina. The part I really loved was: The battle lost but not the war, so bring on the rain"

WOW !! That is my life to a tee right now. So, much is going with Emma, but we are not really getting any real answers or solutions. We just keep finding out new things about her or something new to try to make it better, but no real explanations as to why or how to fix it all for good. You can read all about what is going on with her on her website , but I do not feel like going into it all here.

So, anyway, I feel that I am fighting a battle that is never going to be won. We make advances and we get kicked back but the war is still going on and the war will never end. We will fight till my girl is well. However, the rain is falling on our family hard and fast. We are not sure where to hide, but we are hiding together (her daddy and me that is) We spent the weekend trying to not drown, but it is really hard. We are not sure where to go or what to do next. We are constantly having to either give her medicine or do her treatment for her belly. We are seeing so many doctors right now it is making us all crazy, Emma included.

So, where do we find shelter from this rainstorm? I am not sure, but someday the rain either has to stop or at least slow done right??

Rachel

I might run away:)

Life is such madness right now, I can not possible write about it all. Let's just say we are in doctor craziness. We have either seen or will see almost everyone of her doctors this month. Which has brought up a lot of new and stressful matters.

When I have some answers I will write all about it, till then pray we are able to find out answers to many unanswered questions we have. Also, pray that the stress of so many doctor's visits will not affect Emma to much. She does okay but it is still scary for her.

Daddy and me are really tired from the stress and the no sleep (Emma is having night terrors at night). We are so worried and confused right now with what is best for her health and her education as well (that is a whole other battle we are in). She is a very complicated girl and it seems to always get all crazy at the same time.

This is making all of us worry a lot and really hope that we soon no something to do to help her. I am so worried about her, but I really wish I could just take her away and hide at the beach. Or as her daddy said last night, "I wish I had a magic wand to fix it all right now"

I really wish we could make it all disappear even for a day or two and live in a world not full of doctors and pain. Like I said I might run away! A mom friend of mine said she would gladly help me escape even it was for an hour:) I might have to do it! I really need a moment to relax and refocus. My brain is all jumbled and crazy right now! This mom and me took a mommy break a few weeks ago and it did a world of good for us both. We both have children who have unique traits and we are able to share many of the same frustrations and fears, it is always nice to share with someone who is able to understand what you are saying. Even if it is only an hour, it will still be nice to run away! I swear I will return. I love my family to much to run away for good.



Love and craziness
Rachel

Life is Crazy

Things have been really busy and weird at the Zook household. Emma has been off and on very ill lately. So, we are making the rounds with a few of her specialist to try to get to the bottom of all of this before we all go crazy. Her not being well has really made making plans hard. We are basically having to wait to see how she is doing in the morning to plan anything. So, play dates are not really happening right now, which is sad for Emma and me! We really miss our friends.

I am trying hard to adjust to my new schedule at the library. But trying to find time to work on crafts, book choices, and so on, is really hard. I am still trying to fit it all in, but mostly I am staying up late to get it all done after she goes to sleep. I love my work, but it has been a really long time since I did it, and I am a lot slower then I use to be:) Call it age or extreme exhaustion (Emma still wakes up at night) :)

Anyway, we have a lot going on in the coming weeks. We see a lot of doctors and we have her big dates with Metro. March 3rd is her testing date, and then the 24th is her big meeting:( I am still sad that she is about to be added to the Metro schools system. She is so young, but I guess I am going to have to learn to let go a little bit! I am not happy about it though. She needs so much help, and I do not want her ignored.

Emma is learning so much right now! She is starting to sort by color and like items too. She is learning more of her letters every week. She already knows that M is for mommy, d is for daddy, o is for Owen, e is for Emma, and b is for ball. WE are working on a few others but she is still not getting them. She has learned to say hooray when we sing "If you are Happy and you Know it" which is so cute! She just screams it so loud and clear.

She makes me smile and brings me so much joy. I am really feeling better mentally, but very tired right now. I really wish she would sleep better and let me and daddy sleep too. She is trying to give up her nap, but mommy says no!!!!!!!!!!! NOT YET!

I hope all is well in your life. May God bring you rest and peace!

Rachel