I have this Theory, when my time comes and the big guy upstairs call me home, I will walk into his "house" and have a sit down, hopefully on a big cloud couch, God will be there and we will have two large books, one in front of him and one in front of me. I am not sure what the almighty would want to drink but I believe there will be a great big bottle of Green Tea with mango by snapple sitting in front of me (in a cloud mug....a pink cloud mug) As we sit there sipping away and getting me registered to my heavenly castle...lol...that too will be pink..we will be looking at the books in front of us. The books are both identical on the outside, pink non leather but fake leather, with black letters and hearts all over it. The cover will read: This Book of life belongs to: Julie. That will be the only thing those two books will have in common, and the only reason the spelling of my name is correct on the cover of mine, is because when God handed out life's books to everyone, he put our names on it ahead of time. Everything else will be different. God's book, "the right way" and my copy of the book, "the Julie way". This is probably why I will go to heaven on a friday, that way God will have the whole weekend sit aside to work through my book.
I am going to be honest, I hate reading instructions, if i would be 100% honest I would go as far to say, I hate reading, that is why I have an editor looking over my stuff (after I send it of course, and that goes along with me reading instructions....I can't wait that long) Don't get me wrong, I love learning, but I love either watching it or doing it then reading.
So this afternoon I am sitting here looking over the list of things I have got to do. You see I never make an actual list, and if my husband actually reads this he will fiind out why that is. If I have a list of things to do in front of me I will feel guilty if I cannot get it all done, BUT if I have a list in my head of things that need to get done I can easily "forget" an item if I just feel it is too much to do....thus being another example of a person who hates reading instructions.
So I was reviewing the list in my head, one of the items is to replace dead batteries with all new batteries in anything that is dead from the dead batteries. Oh that should be easy enough. Until I go to open the batteries. Now why is it that something as hard as batteries is a challenge to open but a case of eggs (that can break just by looking at them) are in the most fragil package out there? So I am looking at the batteries, and yes they have a whole list of "instructions" on the back and even in three different languages just in case I have been listening to Dora the explorer and want to challenge myself...I do not...I do not even want to read the english verison of the instructions. Now I know what you must be thinking, "aw she must be lazy." and that is not the case. Let's just say I have had a bad experience in reading instructions in the past and leave it at that (so I can write about it at another time).
So here I am, sitting on the couch looking at a huge case of batteries. I try to open them without the sissors. I try and try and try. It is at this point after trying to claw at the little tiny piece of plastic that looks as though I will be able to pull it open from that, that I am quickly reminded that my finger is still broken. Oh yeah I also don't read doctors orders. So I decided to grab a pair of sissors. I look all over the house for the sissors. Why in the world would I find the sissors. I could not locate the sissors at this point in time, but I did locate a huge, sharp knife. That should be helpful enough.....wrong. After the bleeding stops I will tell you why I chose not to go the route of the knife. After about an hour of looking for something to open the batteries up with, I begin to go through a number of emotions:
1. Determine (yeah this can be an emotion) "I can do it. I do not need to have anything but my own two hands to open this pack of batteries up with.
(Determine can be replaced with personal: "oh no I do not need help this is mine!!")
2. Anger- "Yeah (throwing the pack of batteries) well I didn't want to use you anyway, Mr. Piggy brand (this is the knock off brand of batteries that is suppose to be like the brand with the happy pink bunny with drum, I would say the name of the brand but for legal reasons I am not allowed to and for spelling reasons I will not attempt to spell the name either.)
3. Saddness- "Why, why oh why God? Why can't you let me just open the damn pack of batteries, I don't ask you for much, I don't even bother you unless I am in a serious pickle or to thank you for something, I have never ever asked you for anything....why oh why can't you just let me open the batteries?"
and finally the last two
4. Acceptance- "Maybe this was not meant to be....maybe God doesn't want me to open the pack of batteries...maybe it isn't his will..
5. Blame- "Yeah well if it wasn't for what happened with the stock market crashing maybe I would be able to open the batteries."
And mind you those emotions recycle and can be used in any order.
So after I blamed the stock market and the great depression for not being able to open the batteries, I sat on the floor. And something shiny caught my eye. From the look of the shiny object it looked like a pair of sissors. Oh wow now I can open the batteries. I reached out and pulled the shiny object out from underneathea a pile of papers. Yes it was a pair of sissors....I stopped dead in my tracks...the pair of sissors was still in the thick plastic (same material that the batteries were in) wrapping. And the range of emotions recycled themselves.
It's okay, I will get the batteries out once my four year old returns home from preschool, Fox maybe fiesty but the boy sure can read instructions.
My point of telling you all this is 3 reasons: The Bible is our life's book of instructions, Following God's instructions might mean you can go to heaven on a Tuesday instead of a Friday and most importantly does anyone have two double A batteries I can borrow?
I am sure if I listened more to the Lord above things in life would go a little bit smoothier. Maybe. But I am swedish and according to my mother that means I am stubborn (of course she has german in her, and I believe they are known for their temper...so maybe the combo of me being swedish and her being german just don't work well together lol...I love you mom.)
If I just take time to follow God's word a little bit more and follow mine a little bit less I might manage to get through the journey of life...or atleast be able to have batteries for my flashlight so I can walk through the journey of life during the darker moments.
When Rainy was born the first thing our doctor did was take her foot and place it in ink for the record. After he stamped her foot he took Geoff's arm and put Rainy's foot on it pressing down and leaving a footprint. I will never forget that moment. We didn't realize until a few hours later that Rainy's life would effect more then just her family but a world of people she may never meet.
This weekend was a bit of a gloomy one up here at Children's Mercy. Over the last few weeks I have made friends. The curse and blessing that the Lord gave me was the ability to talk to anyone at anytime. I say curse because I can become a bit of annoying and I say blessing because I am not afraid to talk to a random stranger about God or about Rainy's life.
A few weeks ago I spoke with a mommy who has spent the last six weeks in the hospital with her baby girl. I met Jordan's family the same week I came in with Rainy. The first time I met Jordan's mommy she was standing inside an elevator and she was in tears. Without thinking I reached out and grabbed this stranger and hugged her. I could feel so much pain and so much hope in that one hug. The hug reminded me how human I really was. That might sound strange, but when you go a long period of time in a situation like being in a hospital and not knowing what the next day will bring you find yourself becoming numb to things around you. It is almost something you have to do. I hugged this mom and I asked her if I could do anything for her. She wiped her tears, "no I am fine, I really am." I looked over at Jordan's dad and all he kept saying was, "we lost, we lost." We stepped off the elevator together, I hugged the mom one more time. I wiped her tears and said, "my name is Julie, I am in 2 henson room 9, I am right down the hall from the PICU, if you need anything at all, please come find me. Any time of the day, even in the middle of the night. I am here, even if I am a stranger I am here for a reason. But no matter what I will pray for your little girl" She smiled and nodded at me, and walked down the hall. I was left standing there and that numb feeling started creeping back. My heart broke at the sight of another parent suffering.
About two hours later I met another family, Hunter's family. Hunter has the best parents, they are super nice and will go out of their way to make someone smile. When I first met Hunter's family it was again on the elevators. I got on with this lady. She looked tired. In fact she started to yawn. I smiled and said, "this hospital can sure weigh on you, huh?" she smiled and said, "yeah we have been here for almost a year. My grandson is suppose to turn one on Friday. We don't know if he is going to make it." she started to cry. Again without thinking I reached out and hugged her. I looked at her and asked her for her grandson's name. She smiled and said, "Hunter". I told her the same thing. Where she could find me, no matter what time of day. And that Hunter was in my prayers. She smiled and walked away. What was strange is I forgot the whole purpose of getting on the elevator.
As the last few weeks have come and gone, a lot of changes have happened. Hunter celebrated his first birthday and as of now he is still fighting hard. I wish the same was true for Baby Jordan. A few days after the first encounter with Jordan's mommy I ran a crossed her on one of my nighttime walks. I stopped and asked her how Jordan was. She smiled and said, "The doctor said out of five babies who get this infection (whopping cough) only one makes it. I would like to believe Jordan will be that one." I looked at her and said, "Jordan is a fighter, you need to keep the faith." She smiled, "I believe God can perform a miracle." I looked at her, "I believe anything is possible through God. I believe Jordan is an angel and I like to believe Rainbow is one as well." She smiled at me and offered me a hug. I hugged her and the numbness slipped away.
The next day I went to the gift shop. Now I am trying not to spend any money up here for the simple fact that we just don't have it to spend on things in the gift shop. But every time I am here I like to give a small angel to someone I meet. I already gave one angel away. So I broke my rule. In this case I think it was well worth it. They have these little angel pins that come in all sorts of colors and meanings. My mom got me the one that says, "Angel for a special mom" My dad got Rainy one that said, "Angel for a special granddaughter" I got Rainy two, "Angel of miracles and Angel of faith." Both Rainy and I are into Angel's. I picked the love of angels up from my boo boo (my grandma Peterson)
I walked into the gift shop. Now I make a lot of friends, and the janitors all know me and the food court people know me, so the gift shop people know me. I am known as the heartburn lady. For every time I am stressed I get uncontrollable heartburn. And I was all out. So needless to say I had bought them all out of the heartburn medication at the gift shop. I walked in and the lady behind the counter started grabbing the heartburn medication. I just laughed. "No I just need an angel pin." She looked surprised. I walked over and grabbed the "angel for a special mommy" pin. I placed it on the counter. She looked at me. I smiled, "yeah go ahead and give me a couple of packs of the heartburn medication." We had a great laugh over that. I walked back up to the PICU and went to the nurse. I asked her if she could give the pin to Jordan's mommy. The nurse smiled, "yeah I can go get her if you would like." I smiled, "no just make sure she gets this." I turned and walked back to my room.
Later that night I ran a crossed Jordan's mommy. She looked worn out, her face drained from crying, but on her shirt was the pin. I smiled. She came up to me and hugged me. "Thank you for the pin, thank you for the angel." I smiled and said, "Thank you for letting me pray for your angel, thank you for doing a great job for your little girl." We hugged and parted ways.
I really thought Jordan would be that 1%. I really thought that she would prove to the doctors that where science ended God began. I really believed that a miracle could happen. This morning after watching the doctors sedate Rainy so she would let go of me, I watched them wheel her away. I held her hand until she had to let go. My heart was heavy. I was blessed to have family friends up here with me today. But I just needed a few moments to be alone with my thoughts and with God. I excused myself and walked down the PICU hall. There are double doors that have windows. Through the windows you can see into Jordan's room. I walked to the doors and looked through the window. My heart sank. All of the pink that filled that room, the banner that read "Happy 2 month", the bed, the machines, the worried parents all of that was gone. The room was empty. And so was my heart at that moment my numbness washed away from my tears. Baby Jordan was gone. I stood there in the hall for a good minute. I was at loss for words. I felt nothing but sadness mixed with peace and confusion.
"Why God? Why? You have all the powers that we don't have, you have all the grace and ability to heal, why couldn't you save her? Why couldn't you allow her to be the one out of five? Why?" I stood there not expecting an answer, just expected the tears of loneliness that I have grown to know up here. I dropped my head and just cried. Then I heard the voice my soul so badly wanted to hear. God. All I heard was, "I did save her, from suffering, I answered the prayers."
I pulled myself together and walked back to wait for Rainy. I later found out from another PICU mom that baby Jordan got her wings one minute after Rainy was taken in to the OR. To the minute.
As I look back through this week I can remember so many times I felt God, every time I turned the corner, every time I was welcome into a room to pray with a child and their parent, every time I watched parents break down and say goodbye, God was there. Hunter's dad said, "I like to believe God is in every single room up here and outside each door there are two angels standing guard."
I like to believe that as well. And sometimes those angels are those of the little ones that got their wings early.
I never got to meet Jordan, I never saw a picture of her. But Jordan left a footprint in my life. And as I look towards the next few weeks, and as I look at Rainy's life I cannot help but wonder how many footprints Rainy has left. It doesn't make saying goodbye to someone as young as Jordan any easier, but at least I know her footprint will always be on my heart. My question is, have you left a footprint?
I dedicate this to Jordan and her whole family. I have no words to offer for comfort, all I can say is that my heart and prayers will forever go out to you. The Lord never leaves a prayer unanswered, it just that sometimes the answer is no. In Jordan's short life she effected people she never even met, that should give you comfort in knowing she truly is an angel. God bless!
When you're dreaming with a broken heart The waking up is the hardest part
You roll out of bed and down on your knees and for a moment you can hardly breathe Wondering was she really here Is she standing in my room?
-John Mayer
Man I am worn out. I am beyond drained. I woke up this morning and was uncomfortable. I hate mornings that start that way, ironically I slept better in the rocking chair in the PICU at the hospital then in my own bed last night.
Yesterday Geoff came up to the hospital to pick us up. Normally Geoff comes to the hospital for surgeries and pick up days because we live far away and the boys get so worked up when it comes to saying goodbye at the hospital This time around was much different. We went up in the middle of the night and had to put Rainbow in the PICU, when you are in there you really can't have anyone else back there except parents.
So when our day to go home came Geoff came up to get us. The nurses smiled at Geoff because they knew that he was there to take us home for now. We wanted to make yesterday a fun day for Rainy. Rainy had so much energy but we knew if we didn't force her to sit down she would wear herself out. And she did. We went and got lunch at Rainforest Cafe (thanks again to the RainForest for our lunch and taking care of stopping the thunderstorm so Rainy could sit and enjoy the cafe) We kept her in her wheelchair so she could enjoy herself without leaving too early because she was tired. We met up with a friend from a support group and went to bulid a bear workshop (again thank you to everyone on SB Moms and Dads chat group for paying for Rainy to make a ballet Kitty, we had no money to do that on and you made it possible) and we even stopped and let her ride the Carousel that they had inside the mall (and thank you Angel and family for paying for her to ride) we had a fun time. Never wanted to stop.
When I woke up this morning I decided to drop Fox off to school and take Rainy by her school so she could see her friends for a little bit. I called her wonderful teacher Mrs. Williams (and thanks to all of her teachers and friends for the cards and gifts) and let her know that Rainy was happy and really wanting to see everyone. So we worked it out that Rainy would go for a little bit and stay in her wheelchair so she wouldn't wear herself out too fast. I drove Fox to school and on my way to dropping Rainy off I looked back and she was in tears. I asked her what was wrong, she touched the back of her head and said, "My head hurts so bad, and my hair is gone mommy! " I had a lump that formed in my throat. Keep in mind she didn't lose all her princess hair, but as she has gotten older her hair has become a big deal for her, and missing even a little was too much for her to handle. We also have to keep that area dry and clean for 2 weeks so we keep her hair up and that also shows more. I stopped the car and went back to her. "Rainy do you want to go see your friends, or do you want to go home?" she looked at me, "I want to see my friends."
I decided to call Geoff and ask him to take an early lunch. We decided to take her by her school and let her friends see her and then take her home. When we got to school Rainy was all ready worn out. We put her in her chair and walked into her school. Her teacher was happy to see her as were her friends. But do to how worn out she had become we stayed only a few seconds because we didn't want to scare anyone in her class. We took her back out to the car and let her sleep.
I brought her home and layed her in my bed. She layed there with her stuffed cats and smiled at me. "Mommy?" I looked at her, "yes baby?" She stopped for a few seconds and held my hand, "I don't want to fall asleep." I found that an odd thing to say, I looked at her and said, "Why sweetie, you will feel so much better!" she smiled, "because when I sleep I dream and it makes my heart sad." My eyes filled with tears, I could only imagen what kind of dreams she had. I rubbed her head, "Rainy when you sleep you get to play with Angels and Jesus will be looking over you. In your dreams you can live in the castle you so very much deserve and there is no owies when you dream." She looked at me and squeezed my hand, "will I see you when I don't dream?" Now my eyes no longer held back the tears, and I smiled, "You can see me in your dreams, we will play together and ride ponies to our castle. And I will hold you in my arms and sing to you songs that doesn't sound bad because in my dreams I can carry a tune...lol" We laughed together on that one. She closed her eyes and fell asleep. I put Sleeping Beauty on the tv for her so she could watch it when she woke up.
I left and went into her room. I sat on her bed wrapped up in her blanket and cried my eyes out. I couldn't imagen my life without her. I couldn't imagen being six years old and dreaming with a broken heart. I thank God everyday I wake up to see her smiling, I pray to God every night he doesn't take her from us. She is my earth Angel, she keeps me in check with my faith....she reminds me that God is very real and loves us no matter what....she keeps me believing.
On these bad days I do the best I can too keep her happy. On these bad days I do my best not to cry. I on these bad days I look forward to the day ending so the next day will come. On these bad days I try not to sleep, because I don't want to be dreaming with a broken Heart.
Dear God,
Bless you for all the children you give to us. Bless you for the bad days and the good days. Thank you for giving us another day to be here with our family and friends. Thank you for the dreams, thank you for the doctors, thank you for all the answers and even the ones that end with an answer in the form of a question. We are blessed for the love you give to us, especially the love from a child.
Amen
