Wednesday, July 28, 2010

The Simple Faith of a Child

The last several weeks have not been easy to say the least. The ups and downs of transplant, the transplant itself, and then the constant recovering process. In the midst of this harrowing, crazy, roller coaster ride you have moments that will never leave your mind. They make such an impression on you that they will be forever etched in my mind. The most tender part of my heart though are Olivia's friends. To see them support her, stand with her and continuing to love her through this is more than my heart can take at times.

I could write on and on about all those precious kids/teenagers. Notes after note. Coming to the hospital. Some of them scared to see her and yet do it anyway. Some of the cards and notes that have been encouraging and loving. But, one those moments was with her friend Tyler.

Most of her friends really have no idea how hard this is for Olivia. When you see her, most of the time, she is so full of life and pushing through so much but kids do not really see all that. When they see it for the first time, Olivia with all her tubes and not herself, it can be quite overwhelming. To be honest, some of my friends had a hard time. But Tyler gets it. He understand the depth and magnitude of what she is walking through.

Ty has a genetic disease called Mitochondrial disease. Now before you ask, I have no idea the ins and outs of the disease I just know at times poor Ty is tortured with pain and really has no relief. He also spends those times in ICU and personally, I don't know how they do that. My experience there is hopefully my last. In my opinion, what he goes through is so much harder than anything we have to endure. But Ty thinks Olivia has to struggle more and Olivia thinks Tyler has to struggle more. All in all, they both struggle about the same I think.

That day and most of that night before Ty came, everyone was extremely concerned. It seemed that not only was Olivia sick but her fight had gone out of her. She was so frail and so weak. We kept talking about how the second surgery had taken all the fight out of her. Everyone was worried. The conversation was worrisome because we did not think she could handle anything else. When Ty wanted to come I asked Olivia and she said she did not want to see him. Then I asked her , "Can he stay for a minute…just one minute? " and she said "yes". I was so relieved because I knew he just needed to see her and she really needed something. Anything to get her out of that place she was in.

Tyler has been very concerned about Olivia. She is never far from his thoughts. But the moment that won my heart was seeing him with Olivia. His mom brought him up here because he had to see her. He had to know she was okay. But, when he walked into PICU, he wasn't sad, he wasn't scared (not sure if he was on the inside though but if he was he did not let it show) he was just there. He pulled the chair up by her bed and though Olivia could not really talk or do much at all, he just sat by her bed. For hours they sat there together, in silence, watching mind numbing television. He was not in a hurry to leave. He was not expecting anything from her, he just understood. He understood what she was going through and wanted to be there for her. It was such a precious sight. In my Mom's eyes I don't think anyone had given her that much comfort before. They just have an understanding that no one else can relate too. They have both struggled to survive. They push through more than most kids (or even adults) could ever even think about and the maturity they have in understanding life is way beyond their years. Though, both of them could be angry, upset and bitter they are precious, full of life and live in the moment to make the best of each one they have. As he sat there she knew he understood more than anyone.

He left for a minute to go get some dinner and while he was gone Olivia started getting a bit better. He just smiled. He knew. Something about that time together helped her get over the moment and push back through. Then, he just as quietly went back to the room and just "sat" again. There are times we talk about people that are Angels to us. At that time, I know Tyler was Olivia's guardian Angel with skin on. By the next day she was on her way back to a regular room.

God has the ability to use us all in so many ways. I was so thankful for Tyler that night. He had some understanding that he needed to be here. Maybe he heard God, maybe it was just a "feeling" but whatever it was to him, I know for me….God sent him to help my little girl get stronger and get her fight back and I will never ever forget that moment. Through my eyes I may have felt God needed to do this or that..but, through Tyler's eyes…he knew exactly what he needed to do and followed through.

Kim and I are very fortunate to have these awesome kids. Kim has three others and we are constantly challenged with our walk with God by their simple faith that speaks volumes.

Thanks Ty. Ms. Barb loves you so much.

Sunday, July 25, 2010

Standing in Awe

Standing in Awe

Saturday, July 24, 2010

12:23 PM

Today is ten days out from surgery. But it seems like a year. It seems so much has happened in a week that I can't even fathom that a whole month hasn't passed by. My body is weary. My emotions are all over the place but I am still standing.

I was sitting here in the quiet the other day when Olivia was in surgery thinking about how awesome God is to each and every one of us. You know, never in my wildest dreams would I have thought we would have so much support, prayer cover and love extended to us through this journey in our lives. We have been thrown out of the waiting area twice because we had too many people here with us. Wow.

But the wow is in the oneness (I know it is not a real word) of the body of Christ. You all seem to be in such unity to pray for my precious daughter and that unity has to please our Heavenly Dad. I can see him on His throne listening with a smile upon his face that his children were agreeing in prayer. He is so proud to send forth those warring Angels on Olivia's behalf. Because, so many have laid down their lives to pray for this one girl . You have stopped and whispered her name to him, some of you have fasted for days as you prayed a hedge of protection, healing and love around her, some of you have herald the trumpets of prayer to all of your lists and some of you have physically surrounded us with a hedge of love and protection that has held up our arms while we are in this room standing vigil over our precious little one. The body working in one accord, a strand not easily broken. What a beautiful picture.

My heart is full of the humbleness of how blessed we have been. I know every moment I have not been sane but I know that I have been able to watch over Olivia and walk through this without much sleep because I have been held up. What an awesome God we serve that binds us together in one accord, in love, and reaching out beyond our own lives because our hearts are bigger than ourselves. I love all of you for that. What a precious gift it has been in my life and I will never forget that outpouring of love. My cup truly runs over. Today the Lord's Prayer seems the best picture to me:

Psa 23:1 A Psalm of David. Jehovah is my Shepherd; I shall not want.

Psa 23:2 He makes me to lie down in green pastures; He leads me beside the still waters.

Psa 23:3 He restores my soul; He leads me in paths of righteousness for His name's sake.

Psa 23:4 Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me; Your rod and Your staff, they comfort me.

Psa 23:5 You prepare a table for me in the presence of my enemies; You anoint my head with oil; my cup runs over.

Psa 23:6 Surely goodness and mercy shall follow me all the days of my life; and I shall dwell in the house of Jehovah forever.

Today as I ponder this life and write out my thoughts, this is where my heart is besides next to Olivia's bed side….because I am in awe of God, awe of my friends and in awe of the power of prayer.

In His Grip


Monday, July 19, 2010

Love---Is Tough

Love-- Is really Tough

Monday, July 19, 2010

12:26 PM

Perspective is really in the eye of the beholder. I know it says beauty but really perspective is true as well. I have really seen over the last few days how important perspective can be. It changes your view of your world. It may not change someone else's world view but can make an incredible impact into yours.

When we got the call on Tuesday (Wednesday morning) at 2:00am my world changed. For years, this is what I had begged God for. For years I had seen Olivia wither away in her world of pain and sickness and no way to bring her out. I had seen what she had lost and begged God to give her chance to experience a life without so many complications, pain and sickness. But when that call finally came I couldn't breath. The reality of what that call meant was overwhelming. I kept busy so I could not think about all the things that could go wrong. All the things the Doctors were apprehensive about. All the things that would change in our world if God decided to heal Olivia and take her home instead of here. So, I took a breath, decided to Trust God and move ahead. Then all day I saw my beautiful girl enjoy friends and family coming by and doing what I was doing in her own way. Avoiding the inevitable and someone's perspective of reality. But, as we left her at the OR that night, as she begged her Dad not to make her do it, as she cried and begged me with those big brown eyes to please make it all stop .I stopped breathing. And then I had to walk away so she could go to surgery. Not ever knowing if I would see her again in this world. Not ever knowing if that was the last thing she would ever know and I would hear from my little girl. I almost ran out of that room when she was gone. I was amazed how strong God made me to smile, love and give her the best I had because I collapsed onto Dean about a minute later. God gave me what I needed for one minute then he gave me my husband to hold me up the rest of the way. The toughest love I think is letting someone go to see if they do come back to you. Letting go without a net to catch her. Letting go without knowing what will be on the other side.

Back to perspective. So fast forward through a long night of waiting, waiting and waiting. Then she arrives in PICU. All going well. WOW. Breathe…but then the real hard part starts that I had forgotten all these years. The pain, the up and downs, the screaming, the begging, the holding on. I had friends dropping like flies in the PICU because of the pain and hurt she was suffering and still suffering. I hear their perspectives of my life. How they see what I really have been walking through now. I don't think you can see it without walking in the trenches or having been there. But, to me Love is what gets me through. Being tough on her is so hard but so needed. Walking through this has been more than I ever thought but I had a friend show me how to see past the moment and into the future. The future is so much brighter for her. So God helps me remain calm, not letting it in, keeping it in perspective because my perspective and Olivia's is two different things.

Now, four days later, she is setting records for recovery. Her liver is working, her lungs have finally kicked and Dean and I are elated. Olivia on the other hand, not so much. All she can see is the pain. All she can do is worry about the next therapy session full of pain. But, all Dean and I see is the future. When we are home and maybe, just maybe, not bound by the hospital anymore. Running to and fro to drama lessons, ballet, COOP, whatever she wants to do. Walking in a new place. We are constantly reminding each other every day that our paradigm has changed so our perspective has to change.

The bottom line. God is a God of miracles. We received our miracle today and will always remember that though we walked through years of uncertainty and concern. Though we have lost a lot through the years we have gained so much. Our Faith is strong, our marriage is strong and Olivia is strong and will be stronger. I can't imagine how hard it is on God, our creator, to be tough on us so we are better and stronger but I know that He knows that when it is all over we will be the best we can be. Because I know that when this is over, Olivia is going to be the best she can be. I have seen the Father walking through all of this and I have a new appreciation for His heart, His eyes and His wisdom . Just one more day closer to really trusting Him.

Monday, July 12, 2010

You are making memories...make them good ones

Sitting at my makeshift desk in the hospital room, I am going through my email and of course FB pages as Olivia is finally settled in watching television. The room is quiet, finally, and we have a few hours before the next treatment, medicine doses and IV antibiotics. As I sit here reading I am relishing in not hearing "Momma can you……" for the hundreth time. I am thinking, wow, just a moment, and I will get through email, respond to some people and breath. The day always consist of constant Doctors coming in and out, visitors, nurses, physical therapy and just constant medical therapies that need to be done. The day is exhausting really. I just get tired. I have not been sleeping well. Lately I have only slept out of pure exhaustion.

Olivia is a little frustrated with me because at night my back really, really hurts. It is so hard to concentrate and stay focused on anything let alone a game to play. She doesn't really understand the age, tired, no sleep, back hurting mixture that comes upon me because I just work through it. Lately though, it has been worse than normal but I know it is just stress, tired and needing a break that will never get here until after this transplant. My stepmom would love to come and give me a break but Olivia is not up for it yet and I am not sure I am either. I need the break, want the break but I just can't bring myself to do it.

So what does all of this have to do with the title of the blog? Well, as my little feeble brain is going down the FB page and thanking God for the small amount of time to look at it…I run across a status that says "You are making memories….make them good ones!" Yikes, stop! Everything comes screeching to a halt. Why you ask? Because in my life, life is magnified. Everything is bigger than normal. Life and death is a reality everyday. The financial stress is bigger because you always have to split finances between home, bills and the hospital. Almost like supplying a second home. Marriage stress is bigger because you are always under a certain amount of stress and having to deal with hard issues not just, "you forgot to take out the trash again ". And time is always of the essence because you are not sure how much time you have left for getting ready to go back to the hospital, time with Dean, time with friends , really time to de-stress and time with Olivia.

So, you have to make the most of every moment . When making the most of every moment are they good memories. This is the phrase that caught my eye. Because I sit here and see all the stress. I am constantly pushing Olivia because she has to do it to stay healthy. Let me tell you. That girl is feisty and hard headed. We spend a lot of time being mad at each other these days because she hates doing her treatments, taking her medicine, having to get up and not sleep, working out her sugar levels…and the list goes on and on and on. Oh yes, this is the part where you say "You are doing all the right things" and I respond "I know" but, and this is a huge but, it is dang tough being a Mom. Trying to make all the best choices and not going with what is easy. To push harder when they push back. Love them through attitudes, frustration with you and when this day you are not even on their phone of top five anymore you handle it. I think at various times of the day I get pulled off and on that list, LOL.

As I look at what all we do in one day the one thing hit me right in the face, are Olivia's memories going to be good ones. When Olivia looks back on this time, will she see the sacrifice? Will she understand that I am trying to make the best memories for her, for me, for my family? Will she remember the things I did right or will it all be what she didn't like? Will she just remember that Mom's back hurt all the time or will she remember Mom was there when I needed her? Will she think it was all my fault that my family went through so much or will she understand she had nothing to do with it. Now, before you go all gushy on me…remember…she is a teenager. She is having to endure things that none of us can understand. She is walking through so much that it will be hard to see anything in her mirror right now but when time fades the pain, the heartache, and life becomes "normal" what will she remember.

So, after my wonderful friend posted this status update, I had to stop, think, and make sure that the life I pour into Olivia is important. Her memories are important. Her memories will shape her future and her life. As I said, because of where God has planted and directed our lives we have a magnifying glass over all we do. We don't always like what we see, love what we are doing but we always trust Him to help us through it. So today I am remembering to make good memories with Olivia because when she moves on in her life, post transplant, those are the things she will draw upon to make her life good. And if for some reason our life together is short…those are the memories I will live with and remember about her. I get so caught up in the day to day I forget how important those moments are and those moments make up our memory.

Please know I am good. This was a very thought provoking moment for me but I am good. Well, okay, honestly I am "okay" and I don't really try to take a moment and think about all that is going on but sometimes things like this break through and it provokes my poor brain to assess my life at the moment.

In His Grip