The New Me

I mentioned that one of the books that I read recently was 90 Minutes in Heaven by Don Piper. (Sadly I still have not figured out to underline titles within the text of my blog. Ahhh.)



I really enjoyed this book. I highly recommend it if you have not already read it. I am happy to loan my copy to anyone who would like to read it. I have marked several pages to revisit later.



Here's what I learned about myself and this process after reading this book:



1. NEVER underestimate the power of prayer. Thousands upon thousands of prayers were said on Jeremy's behalf and also for our family. I do not believe that your prayers and my prayers were in vain, they just didn't align with God's will for Jeremy. I have witnessed miracles within this tragedy. I have witnessed other miracles happening around us in the PICU. I still pray every day, all the time.

2. I am amazed at the number of people that God used along this journey. Sometimes I wish I could physically count each and every one. I can only imgaine what that number must be. I wish we could gather together in one place. I imagine about how amazing that would feel to see you all, our Prayer Warriors.

2. "some things happen to us from which we will NEVER recover, and they disrupt the normalcy of our lives. That's how life is. Human nature has a tendency to try and reconstruct old ways and pick up where we left off. If we're wise we won't continue to go back to the way things were (we can't anyway). We must instead forget the old standard and accept a "new normal."

I have wasted so much time since Jeremy died thinking about the way things ought to be. I ought to have four kids here on earth. I ought to be able to tell the world that Jeremy was healed. I ought to be able to put away the baby stuff when Jeremy grew out of it and didn't need it anymore. I'm not ready now. . . (There's way too many to list here) These thoughts rob me of enjoying the moments that I have been blessed to have today. It's like you can only enjoy something to a certain point. For example, when I go to school with my youngest child and marvel at his eyes discovering new things. It's almost like you can see them thinking at this age. Then it starts, I start crying because I know I will never experience this moment with Jeremy. There it is, the rest of the joy. . . well it's trapped with Jeremy. That piece of my heart is with him and it will be forever I suppose.

I need to adjust and accept the way things are and the way things are going to be. They won't change no matter how many tears I cry. I just don't know who I am anymore. There is no way I could have ever returned to the ways things were even if Jeremy had survived this ordeal. But he didn't . . . I am left here wondering where to put my feet down next. I suppose this is a painful process to watch if you are a family member or a friend of someone going through grief. Who knows what will happen, who I will become, but I just hope it is something good.

These " I ought to moments" remind me of the very things that most of us take for granted every day, things that can be taken from us permanently and suddenly, and leave us forever changed.



One a different topic. Please pray for friends of ours, a little guy named Christopher. His sister passed away this summer and now he too is facing some pretty serious health problems. I talked with his Dad today and he has been scheduled for surgery early next week. Please keep his parents in your prayers. These are real tough times for this family.

While we are praying. . . here's a few more requests:

We were fortunate to meet several AMAZING families at the hospital. We will forever feel a connection and a bond to these folks. We are so grateful that they have continued to stay in touch with us and have reached out to us to help us out along this journey. These children are home but are not always without challenge, pain, and difficult times. Please pray for their continued healing and strength.

Many things have left a mark on my soul. I am continually in awe of the medical staff that cared for my sweet Jeremy. I amazed how every day people that you might otherwise meet on the street, are the very people that walk the line of miracles and tragedy every day. They must be affected in big and small ways by what they see and encounter during their hours spent with their patients. Yet, at the completion of each child's journey, however it turns out, they get up and do it all over again. They do it with all the love and compassion that you could ever want for your child. If any of you are reading this , you have my deepest admiration.

I pray that people know the tremendous impact it has on one's life when people take the time to reach out and lend a hand, a shoulder, or their hearts. I feel loved in a way I thought was never possible. I pray that each and every angel on earth knows the depth of my gratitude. I pray that together we can impact someone else's life too!

Selfishly I ask for your prayers for myself. I am haunted by the images of the hospital. Lately, I struggle daily with reliving those moments over, and over, and over, and the feelings that came with them.

With the Most Grateful Heart,
Amy

Standing before the Burning Bush

It took some time to get things in order but it finally happened. We took a family vacation to the beach last week. I spoke before about how our other children keep us focused on life moving on. Yet sometimes it is also hard because doing things for them can also be painful. Going to the beach, to our favorite place in the world, to the place where we usually find peace and serenity, was definately the right thing to do. I don't regret going at all. A mixed bag of emotions stayed with us the whole week. It's another first. A first family vacation without Jeremy. Not just any vacation, but to the beach. We returned to the beach where I left last summer very pregnant and very excited to welcome a new member to our family. It was strange to return and not have that baby with us.

I had a counseling session just before we left for the beach. I was challenged to change my perspective on this chapter of my life. I tried my best to keep this session in mind throughout the week. Making changes is hard and I guess unreasonable to expect it to happen overnight.


The beach is sacred to our family. We can go and the rest of the world seems to disappear. We focus on our family and leave better people and a better family. The beach holds precious memories never to be forgotten. I knew that this vacation would be different. It wouldn't have mattered if we went a month later or ten years later, the hurt would be the same. It was something we just had to do sooner than later. The waves would not and could not wash away a hurt this big. God can. ( if I would just let him and trust him completely with my life and with Jeremy's). I remain in a holding pattern with Satan. Just where he wants me to be. I KNOW Jeremy is in a better place, I KNOW I will see him again, I KNOW he is perfect and healthy now. I also KNOW the size of the hole in my heart and just how very much I miss him. Can you see where I am stuck? Satan wants me to stay sad and angry. He wants me to still ask WHY??? He wants me to focus only on the negative aspect of this story and not on the good that has already happened and what remains yet unseen. I need my heart and my mind to be better aligned and to put my money where my mouth is. If I really trusted God's will for Jeremy and for me, then why am I sad and so shaken? If I really believed with my whole self then I would know in my soul that God is good and it will all unravel to the most beautiful story that I have ever heard when Jeremy greets me in heaven someday. I would not be sad.

I'll share an example to further illustrate where I am and where I want to move away from.
The first day we were there a family strolled past us on the beach. There was a Dad and four children. (wait it gets better) There were three boys and a girl. ZINGER to my heart. It felt like watching what our family would be like if things didn't end the way they did. And why did they have to sit right next to me on the beach?

I saw the baby pool in the closet. I imagined Jeremy splashing in the water and watching his siblings soak up utter joy and happiness on the beach. I imagined a life at the beach with Jeremy. I imagined him being in my arms and the world seeming to melt away because my life was as perfect as I could ever want it to be. Not a care in the world...

I watched as my little guy became frustrated. The older two children were deeply involved playing in did not wish to include their rotten two year old brother who knocks down the very castle and tunnels that they are trying to build. Well I imagined a time when the older two would play and then the little guys would play. My little guy didn't have a buddy.

See the holding pattern. . . these things will never happen. The sooner that I truly accept the reality of the situation the easier things will be. Acceptance is tough. There are many levels to truly accept something with this gravity.

So two things happened over the course of the week. There was some success. I tried my best to alter my thinking when these thoughts of sadness creeped into my mind. I attempted to fill my mind with thankful thoughts. Mostly for my children, my husband, and our family. I marveled at the sight of my beautiful children playing on the beach. Then I was angry that I could not enjoy the experience fully because the grief was such a heavy load to carry. I was thankful that Jeremy would not suffer anymore and that he is perfect in the Lord's loving care now. I stayed focused on him looking down on me from heaven in the arms of Jesus smiling at me with his scrunched up nose. I focused on the thought that I am a blessed and priviledged person in so many ways. To say that that this was a constant battle within my soul would be a huge understatement. The battle was so strong that I think my husband could hear and see the damage from the outside looking in. There was progress, I could feel it. The new perspective was somewhat comforting but there was the pain leftover that I couldn't extract. So guess what happened? I exploded on Thursday. All those feelings that I stufffed back down came roaring out with a vengence and then I did feel a little better.

I've read that it seems to get worse before it gets better. Where there is a will, there's a way. I do not like this place where I am. I desire a way out. I know in order to do that I will have to trust a lot more and fully align my heart, soul, and mind to accpet God's will for my life. I am standing at the foot of the burning bush. The Lord is asking me to take off my shoes. . .

Today's Dose of Sunshine

Sunshine Is. . . (In no particular order)

Knowing that God gives me grace to face today and whatever that brings. He will walk beside me and when life gets too hard, he will carry me. (Even when I am Angry!)

Going out of my way just to drive past some of the most beautiful sunflowers that I have ever seen.

Feeling sad about my perspective on an issue, only for my children to show me a different perspective, a happier one. Life really can be simple, kids can teach us that so often.



Feeling proud of my children as they begin a new school year. They are adjusting better than I am. My children go to a great school where the teachers and staff have embraced them even tighter than ever before.



Having a husband that loves me unconditionally. A husband who helps calm my soul.



Jeremy. I will love you all the days of my life and then some. You have brought so much good to my life even though some of it hurts so much right now. I am thankful to have had the priviledge to be your mommy, even for just a short while here on earth. I will see you face to face someday. . . until then, catch my kisses on angels wings.



My cherubs here on earth. They remind me to smile every day.



My family. They are stuck with me, but they choose to love me anyway.



My old friends who have not disappeared. My new friends who I have been honored to meet. Thanks for walking through the storm with me. Thanks for showing me that the sun still shines even if it is behind the clouds.



Coffee. Especially Starbucks Dark Chocolate Iced Coffee.



A good book. Right now I am reading 90 Minutes in Heaven by Don Piper and The Shack. I know the titles should be underlined but I can't figure out how to do that. I guess that will be sunshine for another day.

Feeling Tech savy (just a little) because I figured out how to change the template on my blog.

Mail. . . snail mail and e-mail. I love going to the mailbox everyday. I love to get mail. I have found such profound inspiration and encouragement from some wonderful angels on earth. Opening my inbox to see actual messages rather than ads for shopping is great too. I feel so richly blessed and loved. Every message is helpful to my hurting soul. Thank you for loving me so much.

What is your sunshine today???

angry

I have been sitting on this post for awhile. I don't like these feelings that I have. I do however, need to let them out. They are real and powerful. These feelings are eating me away from the inside out, literally. I truly appreciate your prayers for me and for those I love so dearly. We are still in a great deal of pain. You will see what I mean as you continue to read.


Lord, you said to bring it to you. Whatever it is. . . well here it comes. I am angry.

I am angry. I am angry. I am angry.


I am angry that I have no where to put that anger. I have no one person to be angry with. I am angry that I do not know what to do with that anger that just boils inside my soul. I am angry that my anger is often misdirected toward other individuals without that intent. I am angry because I do not recognize myself, I do like this person that I have become. What do I do with this anger Lord. I want to give it to you.


I am angry at the situation and lack of control over it.



Iam angry that I cry everyday, many times even, everyday.



I am angry that my children have such a horrific tragedy to face at such an early age.



I am angry when I see them cry and I can't fix this one for them.


I am angry when I see my husband hurting Lord and I can't help him. We so many times need different things. We grieve differently. Things that feel helpful to him bring me pain and vice versa.


I am angry when My youngest little one is still "looking" for Jeremy. He continues to pray for him every night. I say, "Jeremy is better honey. He is all better, he is perfect. He lives with Jesus now." My child sadly responds "no" because he does not understand.


I am angry when I look at the VOLUMES of scrapbooks on the shelf for my other children. I am angry to be almost finished with Jeremy's album. That's it, that's all! There will never be another thing to add to it. I am also angry at myself for wanting more than what I was fortunate to have been given. Some other parents would give anything to have even what I have, some pictures and momentos of their child.


I am angry when I hold my son's lock of hair within mine. I have hair instead of my child. I will never hold his tender fingers in mine ever again. This is it. This hair represents the only thing that represents my child's physical presence in my life.


I am angry when I put away his crib, even though he never slept in it. I am angry that he will never sleep there.


I am angry that the kisses I send to my son are on angels wings. I am angry that I will never kiss his tender forehead while he innocently sleeps in the quiet of the night.



I am angry when I put away his clothing and I put it up to my nose hoping for that baby smell to still be there, but it's not.



I am angry to think he will never wear the clothing ever again. He will not wear the hand me downs from the other boys. I will not shop for the few things that need to be replaced after his two brothers have gone through the box of clothes and they are worn out.


I am angry when I see other babies with their families. I am angry when I think of what Jeremy would be like today and what our family would be like together.



I am angry Lord when I think about the hospital. Why God? Why did you heal other babies and children but not mine? Then I feel angry at myself for even thinking to question you Lord.


I am angry when I am so tired and forgetful that I can't complete even the simplest tasks. I have to write everything down. I can't remember yesterday's moments.


I am angry when I feel lost and in a fog all of the time.


I am angry when I think of what my son went through in his short life. He was sick and hurting so much.


I am angry when some parts of my life are so painful to endure.


I am angry to see my whole extended family grieving. What do I do with that?


I am angry to have people ask me " How many children do you have?" I should have four.


I am angry when the time comes to photograph our children. No matter the talent behind that photo session, I will not like that picture, someone is missing. Someone will ALWAYS be missing.


I am angry when I try to be the person that I once was. The same likes and dislikes do not fit. I am a new person. But who?


I am angry Lord when my stomach literally hurts from the pain in my soul. There are also other new physical manifestations of the pain in my soul. I do not want to hurt like this.


I am angry when I look at others and want their life. I want what I see on the outside. I compare my ugly insides with other people's pretty outsides.


I am angry when I just want some things in my life to be easy and peaceful. Most things are hard and frustrating.


I am angry when it feels like things are getting worse and more painful, not better.

I am angry when I should be excited. I should be excited on the first day of school and at the first soccer practice. Instead I am angry and sad. Jeremy will never go to school or play a sport. I am grieving the loss of all things that could've been. . . who he would be today and tomorrow, not just what he was yesterday.

I am drowning Lord in ANGER!!!

Most of all Lord, I am angry with myself. How dare I question your plan and the purpose that you have in mind for me. Please forgive me Lord. I hurt so badly. I wish I knew your purpose for me. I wish I could fast forward to the end so I could see how this journey ends. This journey hurts so deeply Lord. I wish there was another way to bring glory to your name. Here I am Lord. My mouth still sings praises to your name but with tears flowing from my soul.

Finding Sunshine

I am so thankful that I have three beautiful, healthy, and energetic children here on earth. Jeremy will always be a part of who we are as a family and he has also shaped who will become as individuals. We will never forget him. My children are the reason that I get up every day. They are the reason that I forge ahead amidst the rain, even on the darkest days. They keep my head out of the hole that I want to hide in sometimes.


I am thankful for my husband. Where would I be without you? While our pain doesn't always bring out the best in us, we're a family, and we'll survive with the help of God. Our feet are firmly grounded in him and that is truly a blessing. We will find our way and someday we will smile again and feel it within our souls.


This summer we have taken the time to just take one day at a time. To spend time in the moment. To take each day as it comes, to allow ourselves to just "Be As You Are", and to accept ourselves however that may be. I am thinking of a old poster I used to see at school with Calvin and Hobbes faces all over it. There were cartoon faces depicting almost every feeling that you could think of. I could probably check a lot of those feelings off every day. No one in our family feels the same thing at the same time. We can give one another comfort as needed. My children really are witnessing a wide range of emotions this summer.


We have lived more fully this summer. We make the most of each day and have taken a close look at what really matters. I am fairly confident that many of you reading this have done the same with your families. I am determined to make the best of the childhood years with my earthly children. I do not want this great grief and despair to eat us alive and tear apart our family. The children made a list of the things that we wanted to do this summer. With the exception of one item, we have managed to accomplish the rest. I am impressed and I feel good that I was able to reach that goal for the sake of the children.


We have enjoyed the most fabulous sunsets each night and feel the rays of sunshine shining down on us. We stay up longer. We read that one more book. We snuggle longer and more often. We say "I love you" more frequently. We try our best to let the nuances of life to roll off our backs more. (It is so easy for me to feel frustrated daily)

I am relieved to have found an answer to the dreaded question "How many children do you have?" I've personally found it easier to have a prompt ready to go when I find myself in a situation where that conversation is likely to ocme up.

I am thankful for the people who are courageous enough to revisit their own painful tragedy face to face to support me through mine. This is a journey you hope and pray that another parent never has to walk, but they do. I really have taken every word that has been shared with me to heart.

I am thankful for the folks that have gotten out the buckets and have let me cry, rant, and rave when I need to. Grief is an exhausting process for everyone involved. My life is a heavy load right now. Thank you for loving me through the pain and allowing me to evolve into the new me. The spin cycle is still on, where she stops, no one knows.

I am thankful for the time to share with friends. I cherish each and every one of you. I am also thankful for the new friendships that have been formed at the PICU. You all remain in our daily thoughts and prayers.

Thank you Jesus for giving me the mercy ,grace, and strength to get through each day. I know you are right there beside me every step of the way.

I am thankful for so much. . .

Celebrating Jeremy

One night while chatting about the day and how the week was going, I shared with Scott that I could feel myself starting to work up to Friday. It would be the day that marked two months since we left the hospital without Jeremy. It is so weird how there are times when I know exactly what sets me off and why I am crying and feeling so lost without Jeremy. Other times, it is more frustrating because I have no idea what happened. It just comes out of left field and I am left saying "Wow! Where did that come from?" I knew this would be a hard day and I was working myself up to it already early in the week.

Scott remarked how certain dates and special occasions like birthdays, anniversaries, holidays, and milestone days have always been important to me. I have always gone overboard trying to make those dates special, days to remember. Scott said, to him, the date wouldn't necessarily been any harder than other days, the hurt for him feels the same every day. I expressed a NEED to do something meaningful to honor Jeremy's life. I didn't know what it would be but I knew I couldn't just do the normal "ferris wheel CFO" (Chief Family Officer) activities. I think this uncertainty about what to do led to more frustration as Friday approached. Ideas were swirling in my mind.

I prayed all week and I did eventually decide on a plan. The day was deeply sad but beautiful. It was exactly what I wanted to be. We began the day celebrating the end of a wonderful week at Bible school. The children really had a good time deepening their relationship with their friend Jesus. We went home to spend some time basking in the sunshine. The weather was absolutely beautiful . A good friend brought us a delicious dinner knowing I would not want to or be able to cook a decent dinner for everyone. She also generously offered to take my older two to the store to pick out some balloons for Jeremy. We spent time reflecting on our feelings and then we wrote heartfelt messages to our beloved baby Jeremy. We drove to the cemetary. I was devasted because as usual, I forgot something. I forgot the flowers that I bought to put on Jeremy's grave. A Friday afternoon in rush hour traffic is no time to go all the way home to get flowers. Trevor and Nolan were so sweet. They each found pinecones and random flowers to place on their brother's grave to make me feel better. Meredith bent down and prayed over Jeremy and then sang Twinkle Twinkle Little Star and at last Jesus Loves Me. It was deeply endearing to see my children react this way on their own, without prompting or suggestion.

The one at a time we let the balloons fly up to heaven. We sent our heartfelt messages to a baby that we will never forget. A baby we will see again.

The day was also meaningful because we were able to find the strength within to visit the hospital and the wonderful medical team that so lovingly took care of Jeremy. We feel fortunate and blessed to have met each and every one of them on this journey. God certainly hand picked them to be there with us during this storm. They are amazing and have their hands in the midst of miracles every day. It was so incredibly comforting to be in their presence. It made me feel even better than I had thought. We hope and pray that Jeremy has taught them some valuable information that will empower them to save another child and return him/her to their loving family. We wanted to share with them the peace that fills our heart that they truly did their best to save our son. We are so thankful for this gift. They can only do what is humanly possible to be done, the rest is up to God. He came to receive Jeremy back to his eternal home and there was nothing else medically that could be done to change that. If any of you are reading this post, know that you will forever hold a special place in our hearts.

The day ended with another amazing gesture. Our pediatrician was thoughtful enough to take a few minutes of his time on a Friday night to call and check in with our family. I was so deeply touched that he remembered our family on this day. Our doctor, a kind human soul, reached out to say that he cared and offered some words of encouragement to our family. I am so blessed. You too have a special place in our hearts.

Thank you to everyone else out there that still prays for our family. The many "hugs" that have floated to us in many shapes and forms are STILL so greatly needed. We read every e-mail, comment on our blog, and card in our mailbox. The phone messages and offers of help are so humbling. Please forgive for not responding to everyone. Our Prayer Warriors are amazing angels here on earth. Love and God's blessing to all of you.

A special hug goes out to our family. Thank you for supporting us and loving us through this most difficult time. We know that you hurt too. We pray for the pain that fills your hearts to lessen and for your hearts to be filled with happy moments and loving memories of Jeremy.

Two Months Ago

Two months ago today we faced the most difficult day of our lives. We said "So long, until we meet again, sweet baby Jeremy. Go along sweet baby, grab ahold of Jesus' hand and don't look back. You're going to a better place. A place where you won't be sick any more. No more medicine. No more surgeries. No more ventilator. No more pain Jeremy. Mommy wants to hold you forever but I can't little one. I have just this moment to feel your heart beat against mine. This very moment that I have longed for, for so many days now. I know in my soul that I will see you again. We will be together someday, so it is not goodbye. I love you forever and ever, and always." I remember that moment vividly.


Many parents describe the initial time after a child passes as a time filled with a numbness, anesthesia if you will. You are so numb that you really don't remember the details or feel the intense pain. You are walking around with your heart in shock. Every day is filled with disbelief that something so tragic could really happen. Well it did and the anesthesia and numbness has worn off. The pain has set in and grabbed a tight hold on my heart. I remember everything! My mind replays the moments spent with Jeremy in the hospital over and over and it is all consuming. Some people very close to me have been working tirelessly to help me release the guilt that I feel so strongly. A mother's guilt that I am ultimately responsible for what happened to Jeremy. They make perfect sense but my heart still needs convincing.

I don't recognize myself sometimes. I feel like I am trapped behind a glass barrier watching what once was my life from the outside. Things that I once enjoyed bring little happiness and have little or no meaning anymore. Of course I am referring to things, material, tangible things here on earth, not my precious children. I've been told to keep trying them, eventually they will bring that joy again. In a strange and weird way, this tragedy has brought me to think I am and will be a better person because of it. I feel lost most days. I feel an energy source that belonged to Jeremy. I don't know what to do with that energy. I do know that God is calling me to something, something important and meaningful, I just don't know what it is. Either I am not supposed to know about it yet or I haven't been quiet enough to hear God whisper his direction to me. Scott and I have hopes to use our Jeremy energy and his memory to help others. It is exciting to think all the ways that could happen.

I've been reading a lot of books lately. Books that are not on the New York Times bestseller list. Books that most of you will God willing never read. I have stumbled on the same thought presented more than once. Each time it brings me to my knees in prayer. It goes something like this. Let this really sink in. Beth Moore writes " If God allowed you to be thrown into a pit, you weren't picked on; you were picked out. God entrusted that suffering to you because HE has faith in you. Live up to it. All the way up." I have really needed to be in deep prayer about this. Well first, I don't remember volunteering to be chosen. I didn't want this. I want my beautiful, happy, perfect life back. I HAD everything that I could have ever wanted and then some. I want it back. Just give me what was already mine, nothing more, nothing less. You gave it to me once, just give it back.

Unfortunately, it doesn't work that way. He did choose me, he chose Jeremy, he chose Scott, etc. I know all of this will make sense one day. God does not make mistakes. He does know what he is doing even if I don't. He will help me and sustain me. I can just feel that he has something up his sleeve for me. Something great. Sometimes I feel guilty for fighting that calling because all I really want is my son back. Then I also feel a need to get out my umbrella. Jesus, bring the rain, bring whatever it is that brings you glory. I trust you and your plan for my life. You already have this worked out. You are good all the time. You have my Jeremy and he is okay. He is happy and content in your loving embrace. You left me here to fulfill my purpose. I need to live a life full of purpose to bring you glory. I have a choice."

Many people have commented that they haven't seen us out much. We're out, but there is strategy involved. I thank everyone that has continued to reach out to us. Your efforts to show such compassion and thoughtfulness continues to be greatly appreciated. Thank you for loving me as I evolve into a new person. A mom who is trying to be the best parent I can to three precious children here on earth and learning to live with one in heaven. You continue to make such a difference in our lives. I am so consumed with Jeremy and missing him so much that I forget even the simplest things. My patience is tested every day. Then, when I forget something, it's even more frustrating. I also seem to have trouble completing even the simplest of everyday tasks. I worry what the school year will bring when even more order and routine are demanded of us. I just hope and pray that in some ways that structure and routine will provide healing for us too.

So I am okay for someone who is not okay.