A. Loving. Father.

As I mentioned on Evalette's Facebook page earlier this week, we are HOME!  We are happy and well.  This last round had some difficulties, but even with the tough stuff we had amazing miracles.  So although, we are busy at HOME, soaking up the sun, playing with brothers, sleeping as much as possible, riding bikes, and just being together, I feel strongly that I need to record the events of the past week, the days leading up to her discharge and some thoughts I have in regards to those events.  This post is to praise HIM, our loving Heavenly Father, who loves us and through him all is possible.

Part 1: Miracles
Last Monday, when I posted I was a bit discouraged; mouth sores, nausea, feeding tube, no sleep, and living at a hospital were beginning to wear on both me and Evalette.  By Tuesday, I was more discouraged with myself; where had my happy self gone?  I was cranky and my energy was low.  A friend had sent me a quote,

"It is not the design of heaven that we be rescued from all difficult situations.  Rather, it is the Lords's will that we learn to handle them.  The sense of being overwhelmed is very much a part of the journey."

Joseph Fielding McConkie

Maybe I wasn't so bad after all.  I was very overwhelmed.  So I prayed and prayed.  It was all I could think to do.  It brought me peace and hope.  I realized that the night before, when she had thrown up her feeding tube, Heavenly Father had provided us a blessing.  Without even vocalizing it really, just a few mere thoughts and pleading sent to heaven of hoping and knowing that somehow we couldn't have this feeding tube long because with it my baby was depressed.  I knew that if given the chance she would amaze the doctors and begin eating on her own again.  It wasn't even until after the eventful night and one feeding tube less later that I realized it, Heavenly Father had heard my thoughts and provided a way to get rid of the nasty tube, otherwise the doctors would have never given us a chance to try without it.  I felt a immense amount of love.  He knew me and my daughter and he knew that I desperately needed to know he was there and that she really needed to have that feeding tube gone.  I decided I needed to focus on the positive again and move forward knowing that miracles were happening and that we were going home soon.  I love how Lance Armstrong says it,

"When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally: give up or fight like hell."

I am a fighter and so is my daughter.  Later Tuesday night, right before I put Evalette to bed, the LDS representatives stopped by.  They asked me if we needed anything.  As I prepared to tell them, "No, thanks for asking,", "Yes, Evalette needs a blessing.  Could you do that?" came out of my mouth.  They were more than happy to help.  The spirit that filled our room was amazing.  Love, hope, peace, comfort filled our hearts, souls, and every inch of that hospital room.  Afterwards, as they were saying goodbye, one of the representatives, put his hand on my shoulder, looked me in the eye and said, "You are going home soon."  I cried.  My heart was so full.  Those wonderful priesthood holders coming to our room Tuesday night was the first of many miracles and answers to prayers.  

That night was long.  The shot Evalette was and still is getting, makes her little legs ache.  She reminds me of myself when I am pregnant with restless leg syndrome at night.  She couldn't stop moving her little legs.  At 1 am, she crashed and so did I.  Wednesday morning came all too earlier.  Our nurse, Tracy, came in our room to see Evalette and I half dazed in the rocking chair.  "This is ridiculous!" She announced.  "You guys need some rest and nobody will leave you alone!"  "Go back to bed and nobody will bug you for a while...I will take of it!"  So wonderful Tracy put a huge neon green sign on our door..."E. is sleeping.  Check with nurse before coming in!"  Tracy took her job seriously and gave a furious lashing to anyone who tried to sneak past and dismiss the sign.  We were alone for hours.  It was great.  Heavenly Father had heard my whining and pleading of earlier that week.  I was frustrated, sick of constantly being bothered, tired of having no privacy, and needing space.  He sent us Tracy, our angel nurse.  I was humbled and oh so grateful.  As the day progressed, I was constantly reminded of his love for us.  Miracle after miracle came our way.  First, we were told that Evalette had passed her calorie count...the feeding tube didn't need to be put back in.  They were amazed.  

Then, Evalette developed a fever, a high fever, over 103 degrees.  Doctors were concerned.  They started a strong antibiotic and gave her tylenol to bring it down.  Within minutes, her fever was down and her temp was back to normal.  Nothing seemed wrong, she was eating very well, she was happy, she was talkative, and perky.  It was strange.  Once again, the doctors were amazed.  Nothing grew on her cultures and how was her fever suddenly gone within minutes?  I knew....another miracle.  Another way for my Heavenly Father to show me that he was there and that he was over all.  We got news that as long as her fever stayed away and her numbers trended again that we would be heading home.  

Wednesday night was long.  Once again, my baby couldn't settle down, Twitch, twitch, twitch went her legs.  11:30 pm and she was still bouncing in her crib.  I was talking to Jess and David on the phone.  Evalette loves to talk on the phone, so I decided since she was wide awake she could talk to them.  It was a blessing that I was talking to them because otherwise I won't have know that there was blood all over her bed.  As soon as I saw the blood, I hung up and called the nurse.  We found the blood source...her central line had broke, snapped and blood was dripping out of it, fast.  We got it clamped and analyzed what to do. She didn't think that it could be repaired at all, that we would be heading to surgery that night to get it replaced.  But Rick, who had has been a nurse there for 20 years, said that he could fix it.  So we got ready.  Amber, our wonderful nurse, Tristan, the charge nurse, Rick, and I surrounded Evalette.  We didn't even have to hold her down much.  Evalette just watched as the repair happened and she quite enjoyed Amber singing her "Twinkle, twinkle Little Star".  It was so funny.  Since Evalette's one line had stopped working the week before, we were hopeful that with the repair it might start working again, thus she could avoid having surgery to get it replaced.  After the repair was complete, Rick did a flush, but it still won't go.  We went to bed and I was glad that at least for tonight, we weren't down in the surgery room.  At 5 am, Amber came in to draw labs.  She decided to try the small line, the one that wasn't working.  "I see blood!  It is working!" she exclaimed.  We both couldn't believe it.  It was working.  Amazing and miraculous.  Suddenly I remembered, the day when it had stopped working I had prayed that night while I laid in bed.  I prayed over and over again that her line would work again and she won't have to get surgery.  In my mind, I had envisioned a nurse trying to draw blood and suddenly saying, "It works,  It works!"  And that is exactly what had happened.  Call it coincidence, call it crazy luck, but I will call it a miracle, an answer to my prayer, and my Heavenly Father sending his love.  

Thursday morning, Evalette was doing good.  No fever and happy as ever, a little ansy maybe, but still content.  Dr. Affify came in to greeted us that morning.  She was concerned because although she didn't have a fever, something had to be wrong.  It wasn't possible that nothing could be wrong.  She was hesitate to send us home, maybe keep us for a day or so just to be safe.  I tried to remain calm.  Then Dr. Affify turned to Evalette, whom she calls "Gift of God".  She looked into her eyes and Evalette looked into hers.  "She has told me that she wants to go home.  Emotionally she needs her home."  Dr. Affify said.  "I can't blame her.  This place is a prison....I shouldn't say that.  Pack your bags.  We are taking the risk.  Go home!"  I was so relieved.  HOME.  Heavenly Father had made it possible once again.  He was sending us home, to go be with the people we needed the most, our family.  

Thursday afternoon, we were home.  The miracles and the love from heaven hasn't stopped.  Miss Evalette has been so happy.  Back to her old self I would say.  She is so talkative, interacts with her brothers, laughs all the time, crawls all over, is almost walking, and eating everything in sight (no coaxing or persuasion needed from me, a first in months).   We have been and are continually being blessed.  

"The Saints should always remember that God sees not as man sees; that he does not willingly afflict his children, and that if he requires them to endure present privation and trial, it is that they may escape greater tribulations which would otherwise inevitably overtake them.  If He deprives them of any present blessing, it is that he may bestow upon them greater and more glorious ones by and by."

George Q. Cannon

Part 2: TRUST

But a few things have happened the last couple of weeks that have rocked my world and taught me at the same time.  
I wrote this post on Friday, May 31, the day we were admitted to the hospital to start the last round of phase 2.  I haven't posted it because I felt so torn, so raw, so saddened.  Here it is...

   "Today was our first day back at the hospital...since four days ago.  We sure do love this place (I wish you could hear the sarcastic tone in my voice).  As we settled into our new room (actually it is our old room 4413- they save it for us!) and got back into our regular hospital routine, I found myself scanning the names on each door.  Looking for friends and wondering about how they came to be here.  So many families, so many children, so many stories.  Then I begin to think about Logan and Liz.  Their name is no longer on the board, they got moved to the second floor.  Little Eli needed some extra attention.  I then hoped that I will see them soon; maybe in the cafeteria, in the laundry room, or down the hall.  My good friends.

Our day drags on with chemo, vomiting, pain meds, rocking in our chair and then more chemo, more vomiting, more pain meds and rocking in our chair some more.  Oh my little girl, hang in there we can do this.  We can do hard things.  Finally she fells asleep, exhausted from it all.  Sweet soft cheeks, sparse, yet long eyelashes, and perfect lips.  Oh how I adore her.

I think of Liz and Logan again.  I hadn't seen them yet.  I was getting ansy.  I had to know how my friends were.  So I pulled up their blog...and wasn't prepared for the news I read.  Sweet baby Eli had received his angel wings last Saturday while we were at the hospital.  My heart broke and I sobbed.  How could I have not known?  We were right there and I wasn't there to help ease their burden.

My mind raced back to our month together, right after my baby was diagnosed with cancer.  Liz and I became instant friends.  It wasn't hard to talk to Liz.  She always had a smile on her face.  And even though her baby was in critical condition and struggling to live, she would always ask how we were doing.  She and Logan never complained and never asked why.  Such amazing people.

Why them?  Why did their son have to die?  Out of anyone, they deserved to have their child live.  It isn't fair that my child is asleep next to me, stable and well, while they had to walk out of the hospital with empty arms.  My heart aches.  How can this be?  

All I know is hug your babies close.  Time is precious.  Going to snuggle with my sleeping angel...and to think and pray.  To Liz, Logan, and amazing Eli you have changed my life forever.  Thank you for all you have taught me.  Sending peace and love your way!"

 I am still not sure why little Eli had to go.  But I do know that he left an amazing legacy here with us on earth.  I also found out this week that beautiful Millie passed away a couple of days ago.  Finally free after fighting Leukemia for 3 1/2 years.  What amazing girl.  Oh how my heart ached again; for her family, for her friends, for everything her little body went through.  What a warrior.  I can't help but wonder why things happen, why some die so young, why some stay, why so many children have to fight so hard. Then guilt rushes in, why have we been so lucky and why has our daughter done so well?  I feel so bad that some parents have to say goodbye so early to their precious children.  As I ponder and struggle with my guilt and thoughts; one word has come to mind; TRUST.  

I feel that it is not for me to know.  All I know, especially from our experiences last week, is that we are all children of a LOVING Heavenly Father.  He loves us all and is no respecter of persons.  He wants what is best for us, each of us.  He knows and loves Liz and Logan and hasn't left them alone during this hard time of losing their baby.  He is their father and only wants what is best for them and for Eli.  That brings me peace.  So I have decided to let the guilt and sadness go. Because our Father is in charge.  He knows all.  All I can do is trust and know all things are perfectly orchestrated in heaven...nothing comes of chance.  And that brings me peace.  I love what Liz wrote in her blog shortly before Eli got his angel wings...
One thing I have always tried to think about when times get tough is the well-known Serenity Prayer.  The first part that most people talk about is great but I love the entire thing that isn't spoken about as often.

God grant me the serenity 

to accept the things I cannot change; 

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time; 

Enjoying one moment at a time; 

Accepting hardships as the pathway to peace; 

Taking, as He did, this sinful world

as it is, not as I would have it; 

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life 

and supremely happy with Him

Forever in the next.

At times like this when we feel so helpless because there isn't much we can do for Eli, it is such a comfort to remember that God's will will be done and we just need to have faith that it is perfect for Eli and for us.  Although the odds are entirely against him, we know that if it's meant to be, miracles can happen and we are holding on to that hope.  The greatest comfort Logan and I have right now is the knowledge that we are sealed to Eli and he is ours for eternity.  There is no greater comfort than that.

To my wonderful friend, Liz, may you feel peace, love, and a brightness of hope.  I love you.  You are the perfect example of what being an amazing person is.  Fight on, little Eli, fight on!  

If you guys what to be inspired, read Liz's blog....you will fall in love with Eli and his story.  www.jorgensenjargon.blogspot.com