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.

Grow Old With Me

Eleven years ago today I walked down the aisle to marry my best friend and to embark on a new life together. I enjoyed planning all the details of the wedding but in the end I didn't care what happened or didn't happen. All that mattered was that he would be there to take my hand and say "I do". Everyone that mattered to us would be there to witness this sacrament that we were making to one another and to the Lord. We wrote our own vows and made promises to one another that night that have been the cornerstone of our world. Our marriage isn't and hasn't always been perfect, but show me one that is. What matters is that we have a commitment to one another and we honor that comittment in our daily lives.

Our wedding night was filled with such promise for a beautiful life together. The world was an open book. As time went by our marriage has been filled with many blessings. The sweetest of them all would obviously be our four beautiful children. We achieved everything that we ever wanted in life and that has to count for something. Our dream life was short lived but as the old saying goes, better to have loved and lost, than to have never had it at all. I thought we would share many things together, but never the death of a beloved child. I'm sorry that my husband has to endure this pain in his life. I wish I could heal that hurt in his eyes and in his soul. Having said that, I wouldn't trade that time with our son, Jeremy, for the world. He was part of our story. Our story will have a beautiful ending someday, even if we have to wait awhile to see how it unfolds. Jeremy had a real purpose in our lives and he will shape who we become as a family. When we come through this storm, we will be polished from being thrown around the rapids and rocks of life, and hopefully become better people because of it.

Today, eleven years later, I am thankful for my husband. I am thankful and grateful for our life together. I will hold on tighter, love him more, be more patient, give more, and appreciate the life we do have. Our path has a detour we didn't expect. I will hold his hand and find our way, together.

Grow old along with me

The best is yet to be

When our time has come

We will be as one

God bless our love

God bless our love.

Grow old along with me

Two branches of one tree

Face the setting sun

When the day is done

God bless our love

God bless our love.

Spending our lives together

Man and wife together

World without end

World without end

Grow old along with me

Whatever fate decrees

We will see it through

For our love is true

God bless our love

God bless our love.

This was the first song we danced to as husband and wife. The last verse has even more meaning today. Whatever fate decrees, we WILL see it through.

Happy Anniversary my dear Husband.