Angel Mail #4

Dear Jeremy,

Well what a year this has been. Jeremy, this time last year we embraced the dawn of 2008 with such high hopes of health and joy for you and our family. "2008 will be great" we chanted in our minds. At the time, it seemed that we had triumphed over the mountain and could rest and enjoy life in the valley.

We had no idea the climb that we would begin to make in April. There were mountains after mountains to climb. We would no sooner get to the bottom of one mountain and there would be another waiting for us. Many times, the next mountain appeared just as we started to descend down the side of another, well before even making it into the valley. Jeremy there were so many mountains and they were so steep. Many times, we thought you would be too tired and would be unable to keep climbing, but you did. You were amazing. We were all so proud of you. We thought this journey would end well and that we would always have this great story to tell you as you grew up. As you now know, we reached the summit of our last mountain early in June, but there was no way down again. We panicked. We soon came to realize there was no way out or back down the side of that mountain. We soon realized that we would no longer be together as a whole family here on earth ever again. Jesus himself came down from heaven to rescue you from this earth and the suffering that you came to know. For that I am grateful. Someone reminded me recently that once we get to heaven that we will not remember the hurt of this world. I rejoice for you and your renewed spirit with Jesus in heaven. I rejoice knowing that heaven is so wonderful that you do not remember the tough journey that was your life.

We were left standing on the top of that mountain. It's hard to leave that place, to walk back down without you. Jesus himself has promised to walk beside me the whole way but it still hurts with every foot hold. The mountain is steep coming down too. If I walk too fast, I slip and fall. The rocks slip out from under me. Sometimes I have to stand still or sit down to rest. I keep looking back to the top of the mountain, where my life seemed as perfect as it would ever be and it nearly rips my heart out time and time again. Recalling our hike up the many mountains with you also brings much pain to my heart. As I walk down, I keep my eyes and heartsong focused on being reunited all together someday in heaven. It hurts greatly to walk even with assistance from Jesus and those angels on earth he has placed in my path.

These last few days have been a time of rest down the mountain side. I am sitting still here in this place. I know that there is no way to climb back to my old life with you. I also know that I cannot sit here long, but Jeremy I am tired and I just can't bear to walk farther from you. Not now. I know time will pull me on as much as I drag my feet in the dirt. Life will still move on without you and I will continue to walk on without you in my arms. It has been six months now, yet it still feels more like a very bad dream. I still keep waiting for someone to wake me up and for you to be in my arms safe and sound. Instead all I see is what my life would have been like, all around me. I see you everywhere. Most of the time I still can't bear to watch. A baby still has a way of knocking the wind right out of me. Time hasn't healed me, it has just moved on and dragged me with it. It is cold here. It even snowed this morning. I guess you probably already know that. I feel cold inside too.

Having said all of that, I am ever so thankful for the gift of your life. I was honored to be a part of your life. I wouldn't trade this hurt or to have had the chance to know you for anything. It is an expression here on earth to say "It is far better to have loved and lost, than to have never loved at all." I know there are still great lessons to be learned from this journey with you. I suppose as the hurt begins to subside, I will be able to see things in a different light and will understand and learn more.

I have pondered the verse of my calendar today. "In the beginning God..." Genesis 1:1
"There can be no better way to end the year than to reflect on the beginning of another..."

This year there are mixed emotions. No one could argue that 2008 has been the worst year of my life. In some ways I am happy to see it end. It is very windy at home today. Maybe the wind will blow away this hurt, sadness, and grief that has engulfed my soul these last few months.

In a way I am sadder today as the dawn of 2009 approaches. For you see, you will have no part of this new year to come. You will not have a part in our physical world of 2009. You will remain in my heart forever but the turning of a new calendar year without you here on earth is excruciating. It is a milestone in and of itself, a new year, new memories, and a time of leaving the old ones behind forever. Your physical presence will be left in 2008. Time will move on.

I used to embrace the new year. It was a time for a fresh start, resolutions, a chance to become better in certain aspects of your life. I know that it is a choice every day to choose "joy" over grief. I know that there will be sunshine again, but am I wrong for wanting more than anything to share it with you? It just isn't the same without you. I also know that I am not immune from more pain and suffering in this lifetime. Jeremy I am afraid of more mountains to climb. I am afraid. I have learned all too well the painful side of life.

I know what 2008 brought. 2009 could be better or it could be filled with the same hurt and despair that we have come to know. But...God created the heavens and the earth and filled them with every blessing I have come to know. Who am I to sit in disbelief that he will make good on his promise to me.

I will choose this year to feel the sunshine kiss my face. I will choose to let my heart open itself to the joy that awaits me. I will pray that Jesus continues to hold onto me all the way down this mountain side and that he will guide me into the valley where I can bring him the most glory. I will choose to be transparent for others to see the ways that he is working and molding me in this new life. A new life that he has chosen for me. I am excited to see what awaits me but sad to know that this new life will take shape without you.

I love you from the depths of my soul and I always will. I send all my love to you on angel's wings...

Mommy

Christmas Reflections

We have much to be thankful for this Christmas season. It was a year like no other. It has taken me awhile to be quiet enough and collect my thoughts. It has taken even longer to put those feelings into words

We had the difficult task of trying to celebrate the holidays in a fashion that would be best for five grieving people, who are all different . My husband and I put our focus on the kids and tried to make decisions based on their happiness. The real question was do we continue our regular traditions or do we make new ones. I can tell you neither are without pain. There is and always will be someone missing in our family. In the end, we decided to do a little of both, we found ourselves taking part in old traditions and then creating new ones too.

We found the strength at the last minute to get dressed and gathered with family on Christmas Eve . The kids were happy to see their cousins and seemed oblivious to any pain. It was painful for me to be gathered as a family again knowing all the while that Jeremy wouldn't be a part of these traditions. We would never have the joy of watching Jeremy take his place among all of the cousins. We usually have a gift exchange for the adults. Everyone brings one gift and we have fun swapping the gifts around and having a joyous time. This year, my mother in law got a stocking for Jeremy and our family filled it with donations from the wish list's of the PICU and the Children's House. It was a wonderful way to still incorporate Jeremy into this family tradition on Christmas Eve. It also honored those wonderful places that took such loving care of Jeremy and us. In addition, it was a gift that will keep giving. Many critically ill children and their families will be able to use these gifts.

It was late and we quieted down the excitement to put the kids to bed. A friend stopped by with an important delivery. Apparently, a few weeks ago she had noticed Jeremy's stocking hanging in it's place among the others on a stairway. (We don't have a fireplace) She took it upon herself to make sure the stocking would be filled just like the others. She came over and filled Jeremy's stocking with many surprises for us to open on Christmas Day. Later on Christmas Day we would discover many thoughtful cards, letters, and gifts made with love and filled with prayers for us all from our faithful Prayer Warriors. It was amazing!! There was such warmth in our hearts as we opened each gift knowing that so many of you have lifted us up in prayer and that Jeremy and our family were remembered. Thank you Prayer Warriors for your gift that touched our souls deeply. Thank you Amy for organizing this for us!

There were other gifts delivered anonymously this Christmas. Thank you for your thoughtfulness and compassion as well. It was so touching that so many people took the time out of their busy lives, especially during the holidays, to think of us! Each gift and message was truly appreciated and loved..

Christmas Day was focused on the kids again. It did feel good to see the joy in their eyes as they came down the stairs on Christmas morning. The youngest was particularly excited this year and really had fun opening each and every gift. It was magical for him! I haven't seen my kids this happy in a long time! We feasted on a wonderful and delicious breakfast casserole made by a friend and enjoyed much of the morning in our pajamas.

Later that night we did make it to dinner at the home of my parents. They surprised us with a star named for Jeremy. We will look forward to finding the star together on a clear night. After all, he is a shining star in our hearts and he always will be.


There were many moments that day which took my breath away, moments where my heart felt that empty pit of Jeremy's absence in our family. I tried to focus on the idea of him celebrating Christmas with Jesus in heaven, oh what a sight that must be! While this was a beautiful image in my mind, I still missed him greatly.

There was also grief, sadness, and hurt all around me this year. We had friends whose children spent Christmas in the hospital. A young mother went home to heaven. A friend of mine has lost her son this holiday season. It was a different kind of Christmas for sure. This year it was hard to get excited about gifts and the fluff of Christmas. I just wanted it to be over. I honestly can't wait to put all of the decorations away and go back to normal days.

I just miss my baby so much...

It's Over... recovering in my cocoon

Thanks for all of the concern over the last days. We survived Christmas but just like many of the other "milestone" days, I have discovered that it takes me a few days to recover. You know, one step forward, three steps back, deal etc. So here I rest in my little cocoon, doing all I can to survive and take care of my family. I am deeply sorry for not returning e-mails and phone calls. Cocoon life is just where I need to be right now when I am not taking care of munchkins. I have no intention of offending anyone or hurting anyone's feelings. Please try to understand. . . I do thank you all for your prayers, calls, encouraging e-mails, and checking in with us. I do soak them up and they do help, so please don't stop.

I am doing the best that I can today. It hurts in this place. It hurts when you look up and see lots of other happy families all around you and you just want that life back. It's like watching your old life from the outside of a window on a very cold and frigid night. It hurts when you look up and see other hurting folks around you. I hurt for my friends and family that hurt this holiday season. It hurts to know that you barely have the strength to hang on yourself much less to send a land line to someone else that you care about that is hurting. It hurts to just look up and not recognize your surroundings. Good thing God is navigating this ship. Problem is, I still have no idea where he is leading me, or why he chose to uproot me from my old life. God hasn't made himself appear for the security clearance conference that I have long desired, and there isn't one in sight. For now I remain in this pattern of trusting and having faith that all things will work out for the greater good. That being said, it doesn't mean this place is without hurt so deep it leaves you speechless. But... God, is with me I know for sure. Others may think that I have no peace, but it is there, resting quietly deep in my heart. It is just hard to see beneath this deep and overwhelming hurt. I know it is there. I just wish it would fill up faster. I hear the song, I just can't seem to dance yet. This is a hot topic but I close on that subject for now.

I have thoughts to share about Christmas itself in a later post. But here is a little sneak peek into our house this last week...

The kids have been off from school for the Christmas holidays and the routines and structure of our normal weeks has ceased for the time being too.

Two vomiting children, have given me more sleepless nights, piles of laundry, and more clinging hugs as well. You know it goes. One little person is also cutting two molars to top it off.

Three kids that aren't content until they have opened every last toy that was under the tree (all of which needed adult assembly, supervision, or wow factor)

One little guy that beams with joy that he now has access to brother and sisters stuff under the tree, not to mention all of the decorations that could easily be mistaken for balls to throw! There is even a green football wedged in the branches of my tree. I'll have to take a picture to show him when he is older. This little one is VERY busy and inquisitive. I do not mean to make this sound like I am complaining, I am not. In fact, I am thankful for every hair on his busy head. I am just sharing that he keeps me on my toes and leaves very little room for down time while he is awake. The slightest sound of the phone ringing just makes it worse.

A husband who went fishing overnight. . . and the list goes on and on. It's no different in our house than anyone else's. The only difference I guess is that I have no reserve to go on.

All of this adds up to just exhaustion...

Well I will close for now so that I can soak up some real sunshine with my kids outside. We truly don't get weather like this in December very often. I am happier when the rays of sunshine warm my face. It makes me want to move somewhere where it is warm all of the time. Something to think about...

Christmas Eve 2008

The Christmas holiday is here. We've done all we can to reflect on the true meaning of Christmas and to make it the best we can for our other three children, all the while, trying to embrace the feelings that come over us and NOT to stuff them. After all, they will ALWAYS come back to bite us, maybe tomorrow, maybe next month, maybe even years from now. I'd rather deal with them now and not let them fester deep in my soul.


I am missing my sweet little baby more than words can say. My mind races back to last year and the memories of his first Christmas. I am thankful for those. I am thankful to have those happy memories. They were some of the best that I have ever had in my whole life, when we have been all together as a family of six!

This experience has whittled away all that isn't important in this world. I am thankful for that. Everyone fights that demon. This earthy world makes us think about those "things" far too much. I have my eyes focused on the really important things this Christmas. I have everything that I need and really don't need any package with a pretty bow this year. The "stuff" just doesn't seem important anymore. It has been an honor to give more than to receive. . .

What I want most can't be wrapped up in a box or bag. . . The next few items on my wish list aren't things either. They are "mindsets" that I will have to work hard to achieve myself. More on that later.

My husband and I have heavy hearts tonight for many reasons. Besides the grief that we carry, we are deeply saddened by other families that we know are hurting this Christmas. If anyone out there is reading this post, please pray with us. God already knows them by name and their situation. We have friends that are also grieving the loss of their child, families grieving the loss of a young mother, and friends that are apart from their children and families this Christmas because their child is a patient in the hospital. There are so many hurting hearts tonight for so many reasons. I pray that their hearts can feel some comfort and peace tonight. Peace on earth. . .

As I have commented before, I have found tremendous strength reading blogs of other Mommies who carry this same cross. There is this one mommy that speaks to my soul. These are her words and I must give her the credit. Emily shares this message and I have carried it around in my purse so that I can read it as often as I want or need to. I will close with a passage from her blog that ahas truly impacted me deeply. I find it to be powerfully written and amazing. I share it in hopes that it may help someone else too. Thank you Emily, check her out at ReallyLiving@blogspot.com. I have adapted it to fit our situation with Jeremy.

"Our pastor often says that we as Christians live in the safest and scariest place we could possibly live: the hand of God. Nothing can harm us here. No one and nothing can snatch us from the strong hand of our father. But our father fears nothing. He might choose to carry us through hell and high water. He might let us feel the heat of flames that would burn us alive. He might let us see things, through the cracks between his fingers, that we never wanted to see and that steal the very breath from our lungs just to recall, but he will never let us fall. We might find ourselves reading promises in his Word and wondering how they could possibly apply, when we do feel as if we have been forsaken. We do feel as if we have caught our heels on a terribly sharp stone. But the reality is that our God has never promised to protect this earthly body, this tent that temporarily houses our external souls. He didn't say we would never get sick. He didn't say we would have friends that would understand. He didn't say our marriages would be easy. He didn't say life wouldn't hurt. He didn't even say that our children would live.

He said we could trust him with all our hearts and that He would make the path toward home straight. He said He has hope and a future for us, but He didn't say that future would come tomorrow. He said He would give us beauty for ashes and turn our mourning into dancing, but He never said the transformation would happen overnight. Every step of the way, He said He would be with us. When we cannot see Him, when we cannot understand or even accept His ways, when we wonder if we have been forsaken, we can remember that He promised to never leave us. We are never alone. Nothing happens to us of which He is unaware. Every moment of every day, our Lord is fully aware of every joy and every pain in every corner of the world. We cannot begin to fathom His love for us."Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am."John 14:1-3I will not let my heart be troubled. I will guard it as the wellspring of life that it is. Satan will not win this battle. He roams this earth like a thief in the night. He sees our vulnerable places and goes in for the attack. A person is never more broken than when they are in the throes of grief. I will yet strap on the armor of God. I will turn my ear toward My Shepherd's voice once more. I will choose to remember the beauty of this week last year. I will choose to be thankful for all that we were given and to trust Him with all that was taken away. Jeremy was always God's baby... as are his siblings... as are the children we have yet to meet... as are we. He will take care of us as surely as He cares for him tonight. Instead of growing bitter over what I missed, I will be grateful for all that I received, but was so unworthy of. Tonight, my sweet son rests in the room my Jesus went to prepare for him so long ago. I believe with all my heart that there is a place there for me, in his very room, that awaits. Until I can go where he is, until I can run my fingers over the wounds my Jesus bears as a symbol of the price He paid to give me the hope of a reunion with my Him and with my son and as a sweet retreat from this battle, I will keep standing back up. I will be still and know that it is the Mighty Warrior who is is fighting this battle for me, even now. I am weak. He is strong. And when I cannot walk, His grace will carry me."

Wow! That was beautiful. My friend Emily really can write, beautifully I might add. Her words comfort me and I wanted to share.

A New Holiday Tradition

It is a tradition that I thought our family would never have.


Yesterday, we went to the store to pick out artificial Christmas flowers.

We drove to the cemetery where we would decorate a grave, Jeremy's grave for Christmas.


There were a lot of other families there yesterday doing the very same thing. . .

Most of the graves in the section where Jeremy is buried were already decorated. I felt horrible getting there so late. I just didn't have the strength to go until yesterday.


I did feel better after it was done. I took florist foam and floral tape, but I wasn't successful using either of them so it will be interesting to see if the flowers actually stay for a period of time. Of course it was windy today so time will tell. . .


My two year old walked up with his hands in his pockets looked down at Jeremy's grave and said "Hi, Jeremy."


My daughter buckled to her knees in the mud and started to cry, talk to Jeremy, and pray.

My oldest was so concerned about me and watched every move so carefully.


All of the kids were eager to help decorate their brothers grave for Christmas. It was beautiful having all of us there together. I just wish with all my heart it didn't have to be this way.


My grandparents are buried right beside Jeremy so I was pleased to decorate their grave as well. My other family members have been helping me to tend to Jeremy's grave, so it felt good to help them out too for a change.


I never thought I would be this person, tending to the graves so meticulously. I used baby wipes to wipe away the mud from the headstones and scraped pine needles and other fallen leaves from the bases as well.


I am numb. I wanted to decorate our tree with his first Christmas ornaments and then the new ones from this year. I wanted to watch him enamored with the lights and ornaments on the tree. I wanted to see him not care about the presents and only play with the tissue paper, ribbons, bags, and bows. I wanted to fill his stocking. I guess I have all the memories from the other three and I assumed he would follow in their footsteps.


He followed the footsteps that really matter. Letting Jeremy go was the hardest thing that I have ever had to do. He grabbed the hand of Jesus on April 1st and he followed those footsteps holding onto Jesus' hand to his eternal home in heaven on June 8th. Jeremy's life was a gift that keeps on giving. He has changed hearts in more ways than one but none more than mine.

I pray that I can hold on to the good he has done for me, my family, and for many others out there in the world this Christmas and let my heart be filled with that peace. I pray that my heart can embrace the true meaning of Christmas and not the commercial aspects.

A Grieving Family's Christmas Preparations

As always, preparing for Christmas has been a balancing act. We asked the children what they wanted to do this year for Christmas. I think my husband and I could just skip over the holiday all together. We thought it would be great to go somewhere warm where it didn't even look like Christmas. However, we do have three other children and they deserve a "Merry Christmas" probably more than ever this year. They have been through a lot and we are so sad that they have had to learn of this pain at such a young age. They put up with a lot on a daily basis, more than most kids. We try to keep our focus on the real meaning of Christmas and making the holidays special for our children despite the intense sadness in our home.

The problem is we have barely got back on our feet from the Thanksgiving holidays and Jeremy's First Birthday. Now we are working hard to prepare our hearts for Christmas. As always, there are painful memories attached. This time last year, Jeremy was in the hospital for the first time. He was born with a birth defect that we didn't know about and needed emergency surgery to repair it. We saw so much during that period of time at the hospital. At that time, it was the worst thing that we had ever experienced with any of our children. However, we were continually reassured that Jeremy would be fine. He would leave the hospital and go on to lead a "normal" life. (We all know that never happened. Jeremy's life was far from normal) He would eat normal foods, play like normal babies, and the experience at the hospital would be a fading memory. We were so thankful. There were other babies there that we met that never came home from the hospital, that had serious health concerns, and then even others that would have health concerns their whole life. We prayed for them. It broke my heart seeing what I saw. Jeremy was supposed to be fine. I was told that as he grew up, he would be unable to even see the scar on his stomach. I probably would, but I'm his mother. We brought him home just before Christmas and much to our surprise, he developed RSV and needed to go back to the emergency room. More fun. . . We were lucky to just get treated just in the ER this time. No ambulance ride. . . Then one of our other children developed RSV too and he needed lots of medical attention as well! Needless to say we stayed home for Christmas. It was quiet, but good, even with the sickness. I kept thinking things would keep looking up day after day and our family could finally begin to enjoy life with our new addition to the family. I even have pictures of all six of us in pajamas for most of the day. We were tired, worried, frustrated, but kept saying 2008 would be great!

Well. . . I'm not sure I can say that now. I had no idea what would rear it's ugly head just three months later. I had no idea that my life was about to change forever. I had no idea that I would have to say goodbye to my sweet baby at just six months old. My heart aches for him and the fact that he spent so much of his already short life, sick.

The holidays are here and I struggle to find the emotional stamina needed to stay focused. I wish I could go back in time. I wish I could replay each moment one more time. I would cherish it so differently knowing what I know now. I know God collects each and every tear that falls from my eyes. After all, he sent his only son to this humble world to save us from our sins. His son suffered too. Jesus suffered and hung on the cross. He suffered so that we could be saved. In my shattered heart, I will praise and honor him for his true gift to the world. I will look for the images of Jeremy celebrating Christ's birth in heaven, Oh what a sight that must be.

The photos included above show a few of the Christmas decorations in our home. We found a frame in the shape of a sunshine. Our pastor at church reminded me one day that it is because of the light from the sun that we are able to see the moon and the moonlight on the horizon at night. It refreshed my soul and gave new meaning to my obsession with sunshines. It reminds me to let God's light shine through me, even through the midst of tragedy. He still loves me and Jeremy even though he allowed this happen. Someday I will know the whole truth and it will all be good. Read the comment section from the earlier post. One special reader reminded me that not only will I spend eternity with my son in heaven, I will NOT REMEMBER this pain when I get there. I WILL NOT REMEMBER this hurt and this pain that has engulfed my soul. That friends, comforts me like nothing else can.

The next photo shows a tree made for us by a local Girl Scout troop. Is that beautiful or what? Again, I can't tell you the peace it sends to my heart to look at it all lit up at night. Each one of the girls decorated an angel to hang on the tree and each one is absolutely beautiful. Of course they placed Jeremy, our angel, at the top of the tree. It reminds me that Jeremy is an angel. He is healed and at peace. He walks with Jesus and with all those that have gone on to heaven. I was so touched by the compassion showed to our family from these special children. They reminded us that we are still in the thoughts and prayers of many families in our community. It is comforting to know that so many families petition the Lord on our behalf.

I could hardly believe my eyes when I saw the angel pictured in the third photo. It was made for our home. I had never seen an angel like this before and I had to have it. It has golden hair and the wings are yellow and blue. The angel is flying with a blue ribbon cascading all around him. I think this is one decoration that may stay up all year.

Our tree has been put up. It is not the department store tree by any means, but after all it was decorated with love. Our children decorated the tree with their ornaments and then we hung plenty of the blue bracelets on the branches as well. It was hard to get the ornament box down and find Jeremy's first Christmas ornaments. This was a time that was so very painful. We had to let the children follow through on something that they wanted to do, but it was so hard looking at Jeremy's ornaments. It was so awful not holding him in our arms and helping him to hang his ornaments on our tree. It still makes me cry even as I write this very sentence. I look at our stockings hanging, all six of them. It is just so many other experiences, if we hang it, it hurts to look at it and know that it will remain empty. If I don't hang it, it will be a visual reminder that there is someone missing from our family and that doesn't feel right either.

Lord, I pray that you send your peace to our hearts today as we continue to prepare our hearts and minds for the celebration of Christmas,the birth of your son, Christ Jesus. Let our hearts be open to your goodness and grace. Teach us and show us ways that we can be like "Jesus" to others that are hurting, lost, and in need of your love. Help us Lord, to be a beacon of your light, shining brightly for the world to see, even as we mourn the loss of Jeremy. Replace our horrible images of Jeremy suffering with images of him cradled in your arms. Help us Lord to feel the warmth of your love and the sun still shining down on me.

Lord, I also ask for your healing hands to be placed upon our friends at the hospital. Help heal those children and adults Lord and return them to their homes to be with their families this Christmas.

Amen.

Well there are just no words to describe where I am. I am too tired and too sad to try and describe my feelings. I thought sleep deprivation from a newborn was bad. I was wrong. Depression and exhaustion are a bad mix.

I continue to find comfort in text, so I read. Tonight I stumbled onto a passage that struck me. A friend gave me a book called A Broken Heart Still Beats by Anne McCracken and Mary Semel . (Yes, I still haven't figured out how to underline a title in the blog format. )

The passage reads, "True grief. . . was a secret that defied divulging. There was no way to know it unless it had been bestowed upon you, no way to pass it on once it had arrived."
That was powerful. Oh, how I long to be done with this stage of my life and get back to where I was. If only that were really possible, but of course it isn't today, and it never will be. Jeremy will never come back to this house, his home here on earth. I will never hold my son again. The pain is just indescribable. I would never think of passing this on. I hurt even more knowing some of the other parents that carry this same cross. My heart aches even more for the ones that I don't know. I wouldn't pass this on knowingly to ANYONE!!!!!!

It hurts knowing that this grief is here to stay. I will need to learn a way to cope with it's existence in my life, but it is nonetheless, here to stay. So day after day, this is what happens.
"You just do what you need to do. You wake up every day, and you summon up the energy from somewhere, even when you think you haven't got it, and you get through the day. And you do that day, after day, after day." Jesus carries me these days for sure.

The day after day stuff is hard enough. The added stress of another holiday, Christmas, is drowning me.

Jeremy's First Birthday

Warning: Pull up a chair and get comfortable. This is a long post.



In some ways I was no different than so many other parents. Most won't admit it but there is a certain level of exhaustion that comes after the party is over and the birthday party was a success. I am not a Martha Stewart type that can pull everything together and make it seem effortless. I'll admit it, it is usually stressful and a lot of work. All of the planning and all of the excitement are definitely worth it to see the smile on your child's face on their birthday.


Jeremy's birthday was a success and was everything that I wanted it to be except for the fact that I wanted for him to be here himself to see it all. Somewhere in my soul, I know that he was here and he did see it. I hope that I made him proud.

We went shopping as a family and purchased gifts for Jeremy. That was a big relief. We enjoyed picking out gifts that we would have purchased for him but we donated them to the PICU. It was so endearing to see the children really put so much effort into their gift selections. Our oldest picked out a few movies that he thought the kids would like, our middle child picked out a yellow, fuzzy, soft blanket with giraffes all over it, and our youngest contributed his favorite lullaby CD. I found myself replacing some of the comfort items that Jeremy loved so much. I was relieved to be able to still shop for him and know that these gifts would help someone else, another child. I know these gifts will not erase the experience at the PICU but at least they may provide a smile or comfort them in some small way.



We of course visited Jeremy's grave and I was proud to remember flowers this time. I even found sunflowers in November. It was raining and bitter cold. I was angry. I wanted to stand there or sit there and just have a peaceful moment with him. I laughed a little knowing that Jeremy probably wanted it this way. He wouldn't want me to be standing there crying over his grave. He taught me that we have only been promised this very moment in time and to make the best of it, no matter what. He doesn't want me to waste so much time being sad all the time.


The next day we had the amazing privilege of being able to hold a blood drive in his memory. My grateful heart is overflowing. This is my grateful heart list. I do not intentionally mean to leave anyone or anything out. Please forgive me if an oversight is made. If an oversight happens, it is only in this posting not in our hearts.



We are grateful for the location that was made available to us to use for the blood drive. I am grateful for each of the prayer warriors who are employed at this location. You did a true act of kindness offering your space and allowing us to infringe a little on your time and usual routine. We hope that your space was returned to it's rightful condition.


We are grateful for the individual who helped us get the ball rolling on this blood drive back in September, secured the date, and took care of the details so I could focus on the meal that I was planning in October.


I am grateful for the Red Cross. Without this organization, these types of events could not take place. I am grateful for the individuals that made the blood units and products available for Jeremy when he needed it most.


I am thankful for the coordinator at the Red Cross who made the whole planning process so easy. I'll gladly do it again.


I am thankful for the Red Cross employees who took such good care of our prayers warrior donors!

There were well over 54 prayer warriors, scheduled to donate this time and then many walk in donors as well. What a gift! We collected 44 units of blood at this drive. The Red Cross said that to date over 150 units of blood and many other units of platelets have been donated in Jeremy's honor and memory . Each unit can help up to as many as three individuals. Can you imagine the lives that have been touched by this compassion? Even better, these units of blood have been covered in prayer. The individuals who will receive these units have been prayed for. . . ahh, the power of prayer! I am so grateful and thankful for each and every donor!!

I am grateful for the 12 first time donors. I admire each of you for your strength and willingness to be brave. I pray that you discovered the true gift that you gave to someone, a complete stranger, and felt a power in your soul knowing that your compassion and generosity gave someone a second chance at life. May you each find the desire in your hearts to donate again sometime soon. I also pray that you may inspire someone else to donate blood as well.

I am grateful for everyone's patience the day of the blood drive. There was a shortage of staff and then the master computer crashed. The Red Cross needed to call in and verify each donor's eligibility which really started to slow things down. I am grateful for the delivery of the new computer.

I am grateful for the donors who came and tried their best to donate but were unable for various reasons. We are grateful for your willingness to try and give blood. Perhaps, another time. If not, there are so many other ways to help others. Please do not be discouraged.

I am grateful for the donors that donated elsewhere at other locations, dates, and times, in honor and memory of Jeremy.

I am grateful for the countless sitters that watched children so that their parents could attend the blood drive.

I am grateful for the individual who donated hours of her time to call each and every donor with a reminder call the weekend before the blood drive. You have such a giving heart.


I am grateful for my Bake Sale coordinator. You are the SWEETEST person I know! Thanks for your hard work to make this aspect of the event such a success. Thanks for sacrificing over 12 hours of your time and family time to be such a great friend to us.



I am grateful for each and every baker, young and old! Without your donations, the bake sale would not have been possible! In addition, I have so many recipes to request! I feel a cookbook fundraiser bubbling to the surface!

I am grateful for each person that came to the event to shop at the bake sale. We raised over $800 for Jeremy's Foundation because of your generosity!

I am grateful for the opportunity to support the PICU in their efforts to make a difference in the lives of critically ill children and their families. I am grateful to have the power to do something positive in Jeremy's memory.

I am grateful for my sunshine team that visited the PICU that evening to spread some cheer and share some sweets.


I am grateful for our PICU family. You are never far from our hearts and I love that you welcome us with hugs and smiles each time we visit. We admire your courage and willingness to care for sick children and their families. You have a tough job but oh so rewarding. You make a difference in the world. Do you even know the impact that you each leave on the hearts of each and every patient and their families???


I am grateful for the individual at the hospital who will take the time to help me find ways to have a positive impact on the lives of others. I am grateful for the opportunity to honor Jeremy's memory.

I am grateful for Jeremy's pediatrician. You say that I am amazing, well you are amazing as well. I am humbled that you took the time to attend the blood drive and offer your support. You have had our backs this whole time and yet you continue to extend your compassionate heart to us in our many hours of need. Your support means so much to us, still. We are thankful to have you in our lives.



I am grateful for Jeremy's surgeon. I was so happy to see you and feel honored that you thought enough of us and Jeremy to take the time to attend this event. You will have a special place in our hearts forever. You have a precious gift. It is an honor to know you and watch the miracles that you have a part of every single day!

I am grateful for the creative individual who made a wreath using the blue bracelets. It was such a meaningful decoration and we will cherish it always. We had purchased 1000 bracelets and they were delivered the Friday before Jeremy passed away. I have held onto them for months and was unable to throw them away. However, I had no idea what to do with them. I am grateful for the time, creativity, and effort that this person put into making this tribute to Jeremy.

I am grateful for the individual who purchased pizza for everyone the night of the blood drive. Your kindness and generosity was appreciated. Many hungry tummies were filled thanks to you. You also kept countless individuals from passing out.

I am thankful for each and every soul that helped volunteer at the blood drive. We could not have done this without your help and support. Thank you for sacrificing hours with your families and friends to help us. Thank you from the bottom of my heart.


I am grateful and humbled by the other PICU families that have been forever woven into our hearts. We may have walked those halls of the PICU together for a period of time but we are bound together for good. We thank you for supporting us and helping us out. We are eternally grateful for your support and love.



I am grateful for our family and dear friends that took such loving care of our other children throughout the day so we could devote our attention to the blood drive. We had no worries. . .



I am grateful for the generous donations of copies, babysitting hours, etc. You helped us give more to others who really need to feel love and compassion.

I am grateful for the prayer warriors that have continued to lift us up in prayer. Thank you for not letting us go, times are still tough and the pain is ever so great. Thank you for the many prayers said on behalf of a successful blood drive.



I am grateful to my husband for his unconditional love, support and patience. This journey is tough but we will reach our planned destination someday and our family will be reunited. I am grateful for our marriage and our ability to hold on, even when the waves of the storm would otherwise like to rip us apart.


I am grateful for my three children on this earth who still bring many smiles and joy to my heart every day. I am honored to be your mother. I promise to be grateful for each moment we can spend together as a family. We may be broken but we are still a family.


I am grateful for our extended family. Your unconditional love and understanding helps us continue to put one foot in front of the other, day after day. You haven't let us fall. . . Thank you for everything!


I am grateful for Jeremy. I am grateful for the happy memories and for your place in this family. Your life was a gift to so many, but especially to us, your family. I am grateful for the lessons that have been learned in so many aspects of life. I am grateful for the impact that you have and will continue to have on the lives of so many. You did it baby, you were a part of change in this world.


I am grateful for Jesus. I am grateful that you entrusted Jeremy to me, even if only for six short months. You have made everything in my life that is good, better and worthwhile and everything in my life that wasn't or isn't so good, bearable. You carry me when I cannot go on. NO matter where I am, you are by my side and you love me. I am thankful for what I have because of your presence in my life. I am thankful for the gift of my life and all the countless blessings that you have filled it with. I am grateful for your love and your promise to this world. Through this storm, while I still don't understand your ways, I will praise you.

Angel Mail #3

Dear Jeremy,

Six months have gone by since the day you left this earth to be with Jesus. I told you that day to run along sweet boy, grab ahold of Jesus' hand and never let go. I also told you not to look back and worry about us. We'll meet again and get to spend eternity together. I remember that moment so well. I realize now, that holding you as you left your earthy body to go to your forever home was a gift, a gift that not every parent of a critically injured or ill child gets to have. I am thankful that I was able to hold you one last time and feel your little hand squeeze mine. I cherish every single moment spent with you.

I still have no worries about you sweet boy. I know that you are perfect in every way now. God has healed you from all the things that we could not heal here on earth.

I feel you here with us all the time. If you see my cry, it's because I miss you so very much and the distance between you and I seems so inmeasurable. My human heart still aches and searches for you. Not a moment goes by that I don't think of you. You taught so many people such valuable lessons. People are so kind to share with us all of the stories of how you have changed their lives. For that, we are grateful. I am so proud of you son. As time goes by I can see, more and more clearly, the purpose that God had for your life here on earth. I still can't help to wonder why and still wish that things had ended differently for you, but accept that God will explain it all to us someday. Patience is hard my child, it is so hard.

Love, will live on and never leave. You will be in my heart forever.

Love,
Mommy

450

Lots of ideas for this post have danced in my head for the last two days. Please bear with me as I give in a little to the exhaustion that has come as a result of an emotional two weeks. I just couldn't let another day go by without at least sharing a little of the details.

With all of your help, (drum roll please) we have now given 450 people a life changing gift! Wow!

The Red Cross estimated that there have been close to 150 units of blood donated in memory and honor of Jeremy. I think that's something to be proud of!

The bake sale was a huge success too! We raised almost $800.

The wreath pictured above was made by a very special friend. It was made using the famous blue bracelets and blue bows. It even has a special angel which you can't see too well from the photo, but it has Jeremy's birthstone in it. It is truly amazing don't you think? We love it and look forward to hanging it on our front door for all to see.

Lots more details and thankful thoughts to come. . . stay tuned.

Birthday Wishes on Angel's Wings

Make a Smilebox slideshow

Tidal waves coming, Tsunami looming

How's this for timing. . . All in a day's work.

We said good bye to the toddler bed this afternoon. Our youngest was sleeping in one of the adorable toddler beds for a few months. He is an active sleeper and rolls around a lot. We've discovered that when he sleeps in a larger bed, he seems to sleep better. All three of my older children have slept in that bed during the toddler years. A new mattress set was purchased thanks to the Thanksgiving sales. The toddler bed came down for the very last time today and with it another tidal wave of grief washed in.

Jeremy will not sleep in this bed. Not today, not tomorrow, not ever! We've added two cribs, two crib mattresses, and a toddler bed to the stack of Jeremy's stuff in our garage today. It is not supposed to be there!!!

Our youngest child's room is all his now. Good for him, bad for Mommy's heart. He was to share the room with his younger brother. One year ago, things were so very different in our house. They were supposed to share so much as they grew up together. In the past I have beamed with excitement as each of my children reached a new milestone. I can't seem to find that "whole" happy self as my little one screams with delight over his new "Big Boy" bed. I'm happy for him and sad for me all at the same time. Another multiple personality moment again.

Tears flow as I watch my husband maneuver down the stairs and past the basement door. These items will not go into our closet in the basement where they usually stay while waiting for the next child to grow into them. My husband continued past the basement door and into the garage and all too soon they will be gone from our house forever, just like Jeremy.

I am devastated!! This is just too much all at one time.

Lord, please calm me with the peace that only you can give me. My hands quiver and shake even at this very moment. Please carry me, I can't walk any farther. I can't do this.

The First Thanksgiving

I've heard and read many times how grieving families don't remember much of the first year following the death of a loved one. I can relate to that as I have trouble remembering the ins and outs of most days that go by, let alone a week, or a whole year. Well I would like to put this pain aside and not remember it. Maybe it's the mind's way of healing us one day at a time. However, with other children growing up in this house, I don't want to forget it ALL. There are still moments of joy, sweet memories, and yes, even sunshine. AHH Hah! Yet another useful purpose for this blog.

Well we survived our first Thanksgiving. It was horrible and exactly the way I expected it to be. That being said, we made the most of the day. I am so glad that we stayed home and chose to experience the holiday alone. It was just what we needed to do.

In the quiet stillness of the morning the idea came to me to make this centerpiece for our table. It provided some comfort for us during the day. We lit candles for Jeremy and some his friends that are with him in heaven now. We prayed for each of these families throughout the day, knowing that they were each most likely feeling the same things that we were. We all have a deep desire for our children to still be a part of whatever we do as a family, even if they can't physically be here with us on earth. We wanted our children to be remembered on Thanksgiving. I watched those candles like a hawk, quickly lighting a new tealight once they burnt out. These candles stayed on our table until the wee hours of this morning when I finally went to bed. I can't remember the name of the chemical in the turkey that makes you sleepy, but it didn't work this year.

I suffered from the mixed personality disorder again and it's so exhausting. There are large parts of my soul that are feeling so thankful for the abundant blessings in my life. Part of me wanted to list out each one, but the list was too long. I can also say that the depth of my thankfulness is much deeper than ever before. Yes, I am even thankful for the gift of Jeremy's life. BUT. . . that whole issue of being thankful for everything and in everything was a big debate in my soul. I see that it was the same in many other parents hearts that walk this journey with me.

I spent the morning enjoying a yummy Caramel Soaked French Toast casserole made for us by dear friends who have been a tremendous support to us. I am still in awe that despite the usual preparations for their own holiday, they thought of us and how our morning would begin. They decided our Thanksgiving would begin on a sweet note and it did. We watched a little bit of the parade and then I began to do my best to distract myself from the pain by cooking dinner.

It worked for awhile. I played some music and focused on recipes that I had never made before and as I said, I glanced at the candles at every chance I could. I prayed. I prayed a lot. I exchanged e-mails with my dear friends who are walking through this terrible storm with me. That also made me feel good. We knew where to find one another if the day got to be too much.

Then the enemy snuck in. I knew he was coming and he would take every chance he could to spin me out of control in grief and sadness. My armor was not strong enough...

The tears flowed uncontrollably. I felt like I could not even enjoy the meal that I worked so hard to prepare. I wanted to crawl into bed and wait until the morning came to peek my head out of the covers. I couldn't. There just aren't words to describe what happened next.

We gathered around our table filled with the abundant food that God had provided along with so many other blessings. We each took a turn to say what we were thankful for this year. Family friends, prayer warriors, everything that has been done to support us this year, employment, our health, (here I go again with that long list) were some of the things that were all said and many others in our hearts were also offered up to the Lord. It was what my two year old said that caused us all to stop and just sit in awe of the wisdom of even the little ones. He said " I'm fankful for Jesus and for Jeremy." Tears, tears, and more tears. Jeremy was deeply missed in our home and certainly at our table yesterday. He was forefront in our hearts and minds all day.

I was angry. I wondered what his first Thanksgiving would have been like had he been here. Is there Thanksgiving in Heaven? Would he have worn one of the precious hand me down outfits that have already been proudly worn by his brothers? What food would we have given him a taste of? What an honor it would have been to share all of our usual family traditions with him too. We missed those traditions, but this year it was too painful to do them without Jeremy. We missed our extended family. I didn't want to say or hear "Happy Thanksgiving". Happy would have been the last feeling that I would use to describe my feelings. Numb is more like it.

See the vast amount of feelings that one small soul can feel in just one day??? It really wears on you after awhile.

We ended the day with a little comedy act. Our children, in the true spirit of our family, put on a show for us. The tickets were a pricey $5 each but it was money well spent. We laughed and smiled together for the first time all day.

I am worn out as I expected to be. Now I must gather whatever strength I have left to prepare for yet another difficult day, Jeremy's birthday is on Sunday.

I pray that the grace of God fills me with the rest. I don't know how to do this. . .

Five Grateful Souls

I think I can speak for my entire family when I say we are thankful for so much in our lives. We are richly blessed and can recognize each and every blessing, no matter how great or how small the gift. The trouble is that the grief and sadness we feel living without Jeremy can overwhelm us at times and cloud our vision and feelings of gratitude. We appreciate life so much differently now. God gives us the miracle of this very moment in time, today, nothing more.

Many people have blessed us with the gift of sharing the ways in which Jeremy has made an impact on their lives. We have treasured reading those e-mails and letters and they have provided our family with such comfort. I imagine they will continue to do so for a long time.

We are resting quietly tonight on the eve of Thanksgiving. I realized that it isn't just the holiday itself, it's the family traditions that come along with it that are agonizing my soul. My family traditions have changed over the years but mostly for good reasons. I have fond memories of holiday times growing up and naturally I want the same thing for my children. Trouble , I can't begin to fathom what tomorrow will bring. . . We have chosen to embrace the day and whatever comes with it. I am fearful of the whole in my heart and the magnitude of the pain that I am anticipating. I've read that the anticipation of the painful days is often worse than the day, but I haven't found that to be true myself, at least not yet anyway.

Many people simply follow along with those family traditions that are so special. I have heard many different ways of celebrating the holiday this week. I'll admit it, I am a slight bit jealous.

I am jealous because I desire a day filled with peace, happiness, and fond memories to be remembered. Our first Thanksgiving without Jeremy begins in less than 12 hours. I don't know what to really expect. I KNOW it will be hard. It will be hard for a number of reasons but mostly because the history of our family has changed permanently. We do not have the strength to face the usual holiday traditions without Jeremy. We do not have the strength to face the day, all the while being haunted by the hopes and dreams that were shattered five months ago. Tomorrow we will rewrite our family history and begin a holiday season with new traditions and new memories created without Jeremy here on earth. This is not what I wanted or planned. I am trying so hard to remember that is not mine to plan. My life and everything in it are gifts from God. I will choose to praise him for what he has given me and what he has taken away. We have chosen to go this path alone and let whatever comes to be, be the way we experience it. We have nothing to conform to and that is freeing. No pressure. . . That unfortunately is painful for our extended family and close friends to watch from the sidelines. They are hurting too. They can't fix this problem. Nothing anyone can say or do will change what has happened. People offer all the time the desire to carry even a little of this burden for us, oh how we wish that were possible, but it isn't. We must face the day head on and just get through it. Our family has been incredibly supporting and understanding and we can't thank them enough, but we need to do this part on our own. If I know anything, the Lord will be with us and he will grant us the mercy and grace we need to make it through the day, just as he has these last few months.


Ephesians 1:16-18 I have not stopped giving thanks to the Lord for you. I remember you in my prayers and ask the God of our Lord Jesus Christ , the glorious Father, to give you the Spirit, who will make you wise and reveal God to you, so that you will know him. I ask that your minds be opened to see his light, so that you will know what is the hope to which he has called you, how rich are the wonderful blessings he promises his people.

I will pray tonight that thankful thoughts fill my heart with peace and that the pain subsides for a moment.

For those reading this, please if you would, keep our family close to your heart and in your prayers tomorrow. We ask for prayers of comfort. Please pray that we are filled with thankfulness for Jeremy's life and the gifts that he has left in our hearts forever. Pray that we will see God's glory all around us. Please pray that there will be victory over the evil one who will do his best to win over our minds.

I've been wanting and needing to write but my thoughts just won't settle. No inspiration. . . things are going down hill and fast. I wondered the other night if I was truly feeling worse or if it was the time of year? I still can't answer that question. I do know that I feel pretty darn low right about now and the holidays just aren't helping matters any.


I am STUCK living in a miserable place, just where Satan wants me. He sure has a tight grip on me and although I feel as though I want to be different, the feelings just remain. I am living every day hurting for what has been taken from me, grieving the loss of what was to come, and just plain sick about what has happened to my baby. I actually I do feel grateful to have so many blessings in my life but the pain of losing Jeremy is so heavy that it is overshadowing everything else in my life right now. Jeremy is all I think about and the pain of losing him is so heavy in my heart and in my mind.


This time last year I was due to deliver any day. We had experienced another difficult pregnancy but with a lot of prayers and hard work, it seemed as though we had made it through the woods and the odds of delivering a healthy baby were good. We were all eager to meet the newest miracle in our lives. Would it be a girl or a boy? What name would would choose from our list? What would this baby look like? We were really no different than any other parents ready to deliver a precious baby. Only this year, we are different, that baby is gone. Gone from this earth forever. . . My memories from last year seem confusing. Did I really have a healthy baby?


Thanksgiving is next week. I am dreading the day. I wish I could just skip it all together. I can't imagine feeling anything but pure sadness that day and it scares me. Jeremy's birthday is following close ,just three days later.



I have figured out that my life is like a puzzle. Jeremy's death changed my life puzzle but I can't seem to find the pieces to the new puzzle. All the pieces I find are from my old life and they do not seem to fit into this new life puzzle. I am ready to explode from grief. I am a mother, a mother permanently separated from her child, at least here on earth. So I spend my days "searching" . Of course I am not crazy. I know I cannot find my precious Jeremy even if I search the ends of the earth. I know where he is, he is in heaven with Jesus. But the human heart cannot rationalize that distance here on earth. My heart goes on beating and it cannot find him. That's why NOTHING seems to feel good or right in my life. The hardest part is that we know exactly what we don't want but we don't always have a clear vision of what we do want or knowing the things that will feel comforting.
Jesus, free me from Satan's wrath. I ask to be rescued from this place of pain and suffering.
Jesus, I pray today that you help my heart find a little peace. Help my heart to stop searching for my baby. Jesus help me rest knowing that you take care of him far better than I ever could. Jesus please rest my mind from worry. Please take away the images of my son sick and suffering, replace them with images of him healed and happy with you. Let my heart see that he dances in your arms in heaven today. He is fine now, in fact he is better than fine now. I remember him at four months old and my mind searches for what he would be like now at one year old. He's free from the evil of this world and for that I am thankful. Please forgive me for not being as grateful as I should be for my blessings in my life. Help me Lord to see in full the good that remains in my life, the good that you alone have given to me. Help me Lord, come and rescue me from this pain. I am on my knees begging for your mercy Lord. Show me the way to the good that you have planned for me. Help me see this miracle that you have created using my son, Jeremy.

I ask you to also be with those that carry this cross and burden with me. Lord they are hurting too. Please fill their hearts with peace and comfort that only you can give.

Angel Mail # 2

Dearest Jeremy,

I couldn't believe how much better I felt after I wrote to you the last time. I think I'll give it another try.

It's been getting harder living on this earth without you my sweet baby. I can't seem to remember or think about the sweetness of you in my life. The images of your sickness and hospitalization are so vivid, dominant, and raw in my soul. It is haunting. I think I'm experiencing Post Traumatic Stress Disorder symptoms. When everything was happening, we had no choice but to go through it, doing all we could to save your life. I know you tried your best sweet one, you did all you could. It was just your time. . . I guess all the while I knew that your death was a possibility but I just couldn't accept that reality. Really what parent does? We all hope until there is none. . . I guess I was just so caught up in the miracle that I wanted for you that I couldn't see or understand that God would have a different one in mind for you.

What is heaven like baby? I wish I had a window to see you. On my really hard days, I try to imagine you in the arms of Jesus and angels. I imagine you facing outward, the way that you liked to be held. I imagine your smiling face and it really does calm me. Can you see me? Can you see us crying in sheer despair over your death and absence from our family? What can you share with me about your life with Jesus? ALL OF THE UNKNOWN IS JUST SO MUCH . I'm really not that good at this part. I'm the mother yet I feel that it is you that has so much to teach me. . . Most days my head and my heart dance apart. I pray everyday that I can come to acceptance.

I am just about finished working on a scrapbook that tells the story of your life here on earth. I know your life here on earth is just a blip of time where you are, but it is important to me and to your family. It has been both therapeutic and heart wrenching at the same time working on it. I foolishly keep thinking that if I just wait a little longer to finish it, then it didn't really didn't happen. You really didn't die. It still seems so impossible that this happens, yet it does.

Your Daddy and I are really struggling with the upcoming holidays. We feel like we are chained to train tracks and the train is coming. We know we will somehow get through each one but how??? Our life seems like a puzzle with missing pieces. Trying to do the same traditions and carry on without you feels like trying to put a misplaced puzzle piece in the wrong place. It just doesn't fit. Your Daddy says that it is easier knowing what we don't want, but we can't seem to find the answer to what we do want. This time last year, I was on bed rest, waiting for you to make your grand appearance into this world. You must know by now that I did all I could to ensure that you would be as healthy as possible. To be honest, I am angry that we wanted you so badly, we worked so hard, I threw up for so many months, I was on bedrest, etc. . . and I still don't have you in my arms to hold. It is truly the oddest feeling to remember such joy and anticipation one year ago and then to see our life now today, without you sweet baby. I just can't believe that this has happened. . . I went to someone's house this week and saw a nursery in the works for another sweet soul. It was a window to my old life. That was me one year ago. I couln't breathe when the closet door was opened. Of course I feel joy for my friend, but it is only natural to wonder why this has happened to you and to our family. I prayed to my myself silently " Help me Lord, because I don't understand your ways." I have all the same stuff, but no baby... My heart aches so very deeply.

You would have been celebrating your first birthday in a few weeks. We are busy planning a Blood Drive in your memory. We have no ability to change what happened to you. We can have some power over making a difference in someone else's life. We decided that giving life to someone else would be the best way to honor your life and the legacy that you have left behind. It hurts. I know that in my soul, I would have still have planned something like this AND had a party for you.

It amazes me just how many tears one human mom can shed. I know God counts each and every one. Is there really such a number???

I'm sorry that I don't have much joy to share with you tonight. You get the real me. . . not the face that I work so hard at showing everyone else.

Love,
Mommy

My Love to You on Angels Wings

Dear Jeremy,

I'll begin this letter by saying that this is the last thing that I ever thought I would be doing. I wish I could just snuggle up with you, see your sweet face, and tell you what's in my heart myself. I wish I could whisper these sweet nothings to you as you drift off to sleep in my arms.
Instead, I will write to you because it is all that is left that I can do. I am enlisting the help of some special angels. I hope you get this message.

Did you know that I scrapbook? I take millions of photos, to the point where Daddy thinks I capture every moment that you kids breathe. I just laugh because I know what I'm really doing is capturing every moment that I don't want to forget. I always thought that someday when I'was old and you kids were all grown up, we would sit around and enjoy reading all of the volumes of scrapbooks. I imagined that we would all laugh about the good times and share all of our favorite memories. Time flies. I know that even more, now that you have gone to your forever home to live with Jesus. I did take lots of pictures of you when you were here on earth and I am so very grateful for that. I look at your pictures every single day. When I see your picture, my stomach still does flip flops and sommersaults. I am still in disbelief that something like this could really happen. It still feels like a very bad dream that I can't shake.

Oh sweet baby Jeremy, I miss you and love you so very much. Mommy is so sorry that you had to endure so much during your brief life here on earth. My heart aches for you. I am sorry that I could not fix this or take away the pain that you must have endured. What hurts me the most is the fact that I could not hold you during your 70 days spent at the hospital, the time when you probably needed me the most. I am sorry baby, I am so sorry.

I am trying so hard to be thankful for the wonderful blessing of having you in my life and not to grieve all of the times that we won't get to share together. This is much easier said than done. These last two weeks have been pretty tough, it feels like things have gotten worse. I am haunted by the memories of when you were sick. I am desperately trying to refrain from trying to understand and not to question God's plan in all of this, but it is hard. This experience has rocked me to the core. Everywhere I turn, something reminds me of you and I just well up with neverending tears. I am trying to rest in his peace while my heart shatters in a million pieces. I wish I could just fast forward to the end so I could see how this all unravels, to see the greater good that will come of this tragedy.

You would have turned eleven months old this week. If you are anything like your siblings, you would have probably been walking already. I imagined the fun times we would be having together. I wasn't ready to give up these moments with you. I have been haunted by the images and memories of my last day with you before you went to the hospital. I would have done things so differently if I knew that those were my last moments with you.

We celebrated Halloween this week. I imagined what your Halloween costume would have been. When you were sick, I had it all figured out. We would dress you kids with a Wizard of Oz theme. Your brothers could have been the Lion and the Scarecrow. Your sister would have made a beautiful Dorothy, especially in red sparkly shoes. You Jeremy, well you would have been the Tin Man. You needed a new heart my sweet baby. Jeremy, I wanted you to be here to sit in the Halloween bowl, playing with the bags and wrappers of the candy. I wanted to leave you behind with your grandparents to give out candy to the neighborhood kids, so we could trick or treat with your siblings. Instead, I am left to feel so far away from you. I have never felt so lost in my whole life. All of our usual traditions just don't fit anymore. I can't enjoy them totally because you are missing. I can't help but to miss you and what happiness you would have brought to and shared with our family on these special days.

Your birthday is coming up at the end of this month. I have been busy planning a blood drive to honor and celebrate your life. I couldn't think of any better way to celebrate your life than to give life to someone else. I can't change what happened to you baby, but I can choose to positively change someone else's life . While I know what I am doing is helping someone else, it hurts. I would really love to be planning a first birthday celebration for you AND planning a blood drive.

I am tired sweet baby. I am actually afraid to go to sleep. I am afraid that I will dream about you when you were healthy. I am afraid that I will see you in my dreams the way I think you should be, only to wake up and realize that it isn't true. I am afraid I will have to relive the nightmare of when you were taken from me and your death again. It's too much to bear.

Everywhere I go, I see you. It just doesn't seem possible that you're really gone. I will NEVER forget you my love. The moments I have shared with you, every one, have been permanently etched in my heart. Forever.

Jeremy I was caught up in a miracle of a different kind. One that sure felt very possible at the time. I know you still have a miracle story to tell me about someday. I can only imagine that is much sweeter than any story that I have ever heard. I can't wait to hear it.
Even though things didn't turn out the way I wanted them to, I haven't let go Jeremy. If anything, I've come running faster and harder toward God. My God who gives and takes away and who had the power to heal you but didn't. I pray tonight for his peace that passes all understanding and for the image of you in heaven to be so overhwhelmingly beautiful, that I can, even just for a moment, not hurt so badly.

So I send my love to you Jeremy on Angel's Wings. Sweet dreams little man.

Love,
Mommy

Letting Go. . .

God sure does talk to me in mysterious ways lately. Last week his message was sent over a bowl of hot soup and tonight he spoke to me as I was watching television. His message to me was about letting go. He wants me to take off my shoes. I am STILL standing at the burning bush and I am STILL afraid to take off my shoes. This is the fourth time God has invited me to take off my shoes. What am I waiting for? Here's what happened tonight. . .

I returned, for the first time, to the house where my husband and I stayed while Jeremy was so sick at the hospital. I am describing this journey back there tonight because it is an essential part of my healing . I am struggling a little with the words tonight. I strongly believe that people should do good for others in the world because it is the right thing to do. We should all strive to do our part to make the world a better place. We should do so for the sole purpose of bringing glory to God and not to draw attention to ourselves. It is not about us, it is about bringing people closer to God and a life filled with purpose and meaning through him. It is about treating others in ways that we would want to be treated, you know the Golden Rule. Perhaps, I will even inspire some of you reading this to help others in big and small ways. ALL ways have a great potential for making a tremendous impact on someone's life that you might not even know was possible.

When Jeremy was admitted to the hospital and we learned the severity of his condition, we just couldn't leave his side. God gave us strength that we didn't know we even had. We didn't "sleep" for days at the beginning. The doctors urged us to get some sleep so that we could cope with what was going on and also to take care better care of Jeremy by taking care of ourselves too. Long story short, we were offered the opportunity to stay at The Children's House. From the moment we entered the facility, we felt this overwhelming sense of peace and compassion come over us. We were given an opportunity to have a place to sleep and eat that was clean, quiet, and peaceful. It was a place to be as often or as little as we wished, we could come and go as we pleased. We had a comfortable bed to rest and sleep as best as we could. We could sleep somewhat knowing that if needed, we could be at Jeremy's bedside in two minutes. Literally folks, we timed it. Unfortunately, we did make this run many times throughout the time spent at the hospital. It was also there at this house that we met many families that remain near and dear to our hearts. Our time together will NEVER be forgotten. We were given a gift, a precious gift, that even then, we didn't take for granted. I am wanting to write so much more about that time in our lives, but I will save some for another time.

We always knew that when we could, we would "give back" what was given to us. We would spread some "sunshine" to other families that needed it too. This ability to help others would also in turn help us heal. Helping others or making a positive difference, however small, allows us to "let go" of the some of the anger and frustration we feel over losing our precious son. It isn't easy at all. Sometimes helping others forces us to open our very raw wound and confront extremely painful memories. We were blessed by so many things during the time of our storm, Jeremy's illness and death. I would hate to think about what that journey would have been like if the support system we were fortunate to have had in place wasn't there. This empowers me to make sure and keep those support systems in place for other families. In the end, even if it was hard, I usually am glad I did complete the task.

For about a month now I have been working hard to coordinate a dinner for the families at this house. We could not believe the outpouring of support that we received from family, friends, our church, and the members of our community. We were humbled again. There were folks that donated cash and gift cards. Other friends made actual components of the meal itself. I can hardly get food on my own dinner table, let alone provide a meal for fifteen families at once. Others donated decorations, drinks, decorations, etc. There were even groups and classes of young children that participated by making decorations, placemats, and napkin rings. I was also fortunate and blessed to take along some very special people with me, representatives from our "Prayer Warriors", to help the actual night of the dinner. In addition, there were others that donated greatly needed items from a wish list that the Children's House needed. Last but not least, there were many others that prayed for this mission to be successful and for us to truly help others in need of some "sunshine".

All of these special angels on earth made a difficult night for me possible. I COULD NOT have pulled off this event alone. I cried the whole week leading up to the dinner wondering what it was really going to feel like walking the halls of this house again. I was anticipating the pain that I would feel remembering that time in my life and knowing all the while, that I still wished for things to have ended much differently. So if you helped make this night possible, please consider yourself hugged! Also know that without a shadow of doubt, that your efforts, compassion, and generosity, were greatly appreciated by our family, the Children's House staff, and of course the current and future families staying at this facility. You made a difference in someone's life tonight! We plan to go again, so stay tuned for the next date. We will definately be looking for lots of helpers at that time.


The Rays of Sunshine committee tonight.

MMMmm. A fabulous spread.

We wanted the room to look and feel warm with compassion. I think we succeeded!

I also cried all week watching the food, items needed for the dinner, and wish list items pour in. LOOK AT THIS! The looks on the faces of the staff when they saw what we brought with us was priceless. We filled two vehicles, a van, and a SUV to the max! What a blessing! In addition, I also collected almost $500 in cash. WOW! I used some of the cash to purchase a digital camera for the families to sign out and use. Get this, it was even light blue! I knew at that instant that it was a meanigful purchase. I plan to use the rest of the money to most likey purchase sheet sets and other linens for the house, unless there are other needs that are more of a priority. Thank You!

There was another very meaningful experience that I shared tonight but I will save that for another time too.

When I finally came home, my mind was naturally going in so many directions as I debriefed the evening in my mind and I was emotionally exhausted. Don't get me wrong, I felt great knowing that we succeeded in our mission and I was at peace with that part. My heart and mind were on Jeremy and my heart was aching. I turned on the television and had hopes of watching "brainless" T.V. so I could fall asleep. What happened next was unbelievable. I was zoning out. What I heard the character on the show say next woke me up. I don't even watch this show on a regular basis so I don't the story lines or anything at all. Then I realized it wasn't the show, it was GOD again. He had a message for me. "Let Go Amy! Let it go, give it to me. Give it ALL to me."

The character was talking about letting go. Letting go of things that you can't change. What happened, happened. (Jeremy is gone, he lives with Jesus now) Take a deep breath, this is your new reality. (Jeremy isn't coming home, you will live your life here on earth without your precious baby) Whatever anger and frustration you have, you have to let it go. There isn't a reverse button in our lives. It's not easy and your brain will try to get you off track, you will feel like a stubborn horse that won't stay on the path. The really important things will become clearer in your life. Whatever junk you thought you needed to make your life worthwhile, well, that goes away. Life gets richer. Small changes begin to happen and they are real scary at first. You started out in life a whole other person. Something like this happens and it changes a person forever. This new person forms but UNTIL YOU LET GO, you will NEVER realize your full potential. You have been given a special challenge. Special challenges allow for special circumstances to float to the surface.

I could hardly believe my ears. We have DVR so I rewinded this part and listened again. Then I rewinded a second time so that I could write down what I heard. Some might say that maybe I am reading more into something that just happens to be a coincidence. I don't belive that to be true. What a powerful statement that character made on such a meaningful night like tonight. I believe God had a message, a lesson he wanted me to learn, and he chose to deliver it to me through a "mindless" span of watching T.V.

I heard it. Question is, will I take off my shoes? Am I ready?? Will I let go? My brain knows to trust God but my heart still wants Jeremy.

Clean Soup

Funny story. . .

Early in the morning I had prepared a Pot Roast in the crock pot for dinner. The recipe called for 1/2 cup of beef broth. There was a little left over so I reserved the rest, unsure what I was going to do with it, but couldn't bear to be wasteful and throw it away. As I was preparing lunch on this 80 degree Tuesday, it came to me. I would make soup with the broth and Pastina noodles (little stars).

So I called the children to the table to eat their lunch. My daughter took one look at it and said
"what's this?"

I replied "Soup, it's Pastina, you LOVE pastina soup."

My daughter said "Mom, can I have clean soup? This one is dirty."

I could hardly contain myself. She had never had a dark broth soup before. She thought the broth was dirty and wanted "clean soup" as she reached for and then handed me the Campbells can of Cars Soup.

It was the hardest I had laughed in a long time.

Then it just wouldn't leave me. I kept thinking about it all day. Well the Holy Spirit works in mysterious ways. There was a lesson for me to learn from this experience too. You know we all wait around to hear the voice of God have conversation with us just like our friends. Well, he doesn't always deliver his message to us like that. Sometimes you receive a message even when you aren't expecting one.

Here is what I received. I am the mother of my FOUR children. I prepare wholesome and nutritious meals for them every day. (OK, most of the time) As a parent, I definitely have their best interests at heart every day. I know what is best, even if at the time they don't see it that way. This mentality applies to many areas of life not just nutrition. I remember as a child myself questioning my parents' judgement, only to realize now as an adult, that they were usually right in the end.

Well, here I am a child of God, wishing for clean soup, instead of being content with the broth of life that God has prepared for me. He has my best interests at heart and knows what is best for me. He knows the end of my story and the bible says that everything will work out to be good. It's hard to see that right now, but he knows that to be true. I am staring at this "dirty soup" crying and spending time refusing to eat it, to accept my circumstances if you will. Well, God knows that what he has prepared for me is good, wholesome, and last but not least, good for me, for whatever the reason. He knows my whole story intimately because he loves me. He loves Jeremy.

I will sit up and try my best to feast on the life that God has in mind for me. God is good, all the time, God is good.

Be the Change You Wish To See In The World

There is a saying that hangs above my front door. "BE THE CHANGE THAT YOU WISH TO SEE IN THE WORLD" I like to read it as I leave our home. You can make two choices in life. Watch from the side lines as life passes you by or do something active to leave the world a better place. Our family could (and we sometimes do) wallow in our sorrows over losing our son to such a devasting tragedy of a disease or we can seek out activities that will help others along the way. Maybe the outcome for them will be different. Today I am proud to say that we didn't wallow, we were a part of something that could change the world. A change that could change the "hearts" of many people.

Today it was an honor and priviledge to participate in the American Heart Association's Heart Walk. It was a beautiful day, such a perfect fall day. The leaves are just starting to change colors and the temperature was perfect for a fall walk. It was a great way for us to gather as a family to do something good in memory of Jeremy.

We were so honored to walk with two other families that we met at the PICU. It was so nice to have some emotional support along the way. We joined those families in celebration of life. The lives that have been saved and the children who will have a second chance at life here on earth. We were so very thankful that their children were with us today taking part in the Heart Walk. There were other families that we met at the hospital that were not here today, but were held close to our hearts. In addition, I also happened to run into a friend from college, who's son was also born with a heart condition. Their son's surgeon was the same one that worked so hard to heal Jeremy. We look forward to watching these special children grow up and to see the plan that God has in mind for their lives.

We walked in memory of Jeremy. We thought about him and prayed throughout the walk. I felt peace today as I walked the path around the lake. It feels good doing something good and productive in his memory. Sitting around feeling sad all of the time doesn't change anything. My son still resides in his forever home and he always will. His life on earth was short but full. He truly did accomplish so many wonderful things. Choosing activities that focus on what I CAN change on this journey are healing for me.

It isn't visable from the photos too well but we all wore our blue Jeremy bracelets and also a green bracelet for Organ Donation. We decorated the stroller (for the youngest to ride in but he didn't) with blue bows. I wore a sticker on my back forother walkers to see that our walk was in loving memory of our son, Jeremy.

Last but not least we walked in tribute to those medical professionals who work tirelessly to save lives. The doctors, nurses, CNPS, and respiratory staff that so lovingly took care of Jeremy were forefront in our minds today.

The money raised from the Heart Walk will go directly to the American Heart Association. The money will help fund research that WILL save lives. Other families may be spared from feeling the very pain that we feel every day. We were a part of positive change and it felt good. Just maybe . . . in small way, we changed the world for another family.