This Minute

I found a beautiful card today at Trader Joe's of all places.



It read:



There is only one minute in which you are alive, this minute, here and now.



The only way to live is by accepting each minute as a unrepeatable miracle.



Which is exactly what it is- a miracle and unrepeatable.



-Storm Jameson



WOW... life really is a miracle. I certainly have a different outlook on the miracle of life now since going through this journey of life and death with Jeremy. I notice things that I never noticed before.


My challenge to you today is simple... make the most of the minutes you have today with those that are near and to you. Take pictures or jot down a few lines in a journal. Do your best capture the memories, even the simplest ones, that have the potential of unfolding today. The minutes are miracles, each and every one. They are unrepeatable, we can't get them back.

Give thanks and praise God for the miracle of your life and for the lives of those you love the most. Perhaps even consider giving life to someone who is in desperate need of a miracle in the form of a blood donation. Find out more about organ donation... It will save a life.

Life is a gift and a blessing. Enjoy it...Cherish it...Give thanks and praise to the one who created this life for you.

We Remember...

Technical difficulties have once again occurred. I am learning more about this blog world as we speak. I suppose some people saw a new title listed and then were unable to find text to go along with it. Guess what? The same thing happened to me... sadly I spent a fair amount of time journaling about a significant event that we attended last week only to find an empty text box today. AHHH...

So here goes Take II

The hospital where our son spent the last 70 days of his life hosts an annual memorial service for the families who have lost their children to tragedies of many kinds. It was beautifully done yet incredibly sad. Time has moved on and yet I still could not believe that we are a family that attends an event like this. It was a time set aside for families to "pause and remember" their children.

The room was filled with parents just like me, suffering the same pain as they face each day without their special children. That in itself was a dichotomy of feelings. If one were to look around, you would feel sad that there were so many families who had lost their precious children, yet there was comfort in that room too. These parents are facing the same pain and suffering through the severe emptiness in their hearts too. It was a place to "be real", no acting, no white lies, no feelings of people not being able to understand. It was a very emotional evening but as I continue to spend time with these other parents, I find it is also a breath of fresh air. It is yet another provision that God has provided for me. He has provided me a support system. I am sad that other families feel this hurt. I wish no one else ever had to feel this pain. Sadly, I have learned that it is part of life here on earth. I am thankful for the new friendships that I have formed with these parents and I am humbled to endure this storm together.

I am thankful for the opportunity to hear my son's name called and to know that he has not been forgotten.

I am thankful that so many compassionate people worked hard to make a night like this possible for families. It was unforgettable. Your efforts and time were greatly appreciated.

I was thankful for the opportunity to see the many expressions of grief that other families have shared.

I was thankful for the opportunity to write Jeremy's name on a quilt which will hang on the wall in the hospital.

I was thankful for the openness of the other families and their willingness to share their stories.

I was thankful for the photo slideshow. It was a moving experience to see the children.

I was thankful for the poems that two special siblings wrote and shared with the group. You could feel the love in their hearts.

I am thankful for the parents who are able to remember the early days of their grief and events from the first year. I am thankful for their willingness to share that pain in order to help another parent. It has been a tremendous support system and I am ever so grateful to have a "sponsor" if you will, to check in with from time to time.

I was thankful for the continued support of our hospital family. It was wonderful to see one of Jeremy's doctors and a very special nurse. I was touched that they took the time to attend and to visit the families. I was brought to tears hearing that they remembered Jeremy. I was also thankful to hear that other families "grieve" the loss of the relationships formed in the hospital. I deeply miss our PICU family and wish there was an easier way that we could stay in touch better.

I was thankful for our extended family and prayer warriors that were physically present and also for those who were with us in spirit. I am also thankful for their visual support as they ALL wore yellow in Jeremy's honor.

I was thankful to find a yellow dress to wear and for my son's help in finding it. I enjoyed a special evening shopping with him.

I was thankful for the kind friend who shared her shawl with me since my dress was sleeveless.
Our budget thanks you too!

I was thankful for the yummy chocolate covered marshmallows. YUMMY!

I was thankful for the beautiful flowers that I was able to bring home.

I was thankful for the craft that my other children were able to make to express their emotions of the evening.

I am thankful for my Lord and Savior who has carried me to this place in my life. He has been my source of strength these last eleven months. I am thankful for the ultimate sacrifice he made so that we may have eternal life with him in heaven.

All in all, it was a beautiful service that honored the lives of some very special and brave children. These beacons of light have taught us all so much about life.

Angel Mail # 9

Dear Jeremy,

Oh, how I miss you sweet son of mine. My heart is heavy tonight.

I guess it is just that time of year. I am remembering so much about our life as a family of six and what you went through last year. I am feeling like my life just slipped through the cracks of my very fingertips. How does that happen? I keep praying that my mind will stop searching for the answers to the millions of "why's" in my mind and that my heart will continue to move toward acceptance of the reality that our family is apart for now.

Every day there are painful reminders of what could have been... we attended a picnic tonight and I saw children that are the age you would have been today if you were alive. I saw families playing together and thought of the joy it would have brought to have those moments with you. I heard Dads and Moms dividing their attention among the older kids and the younger kids in their families.... that was us too! Why won't your mommy's heart fully accept and understand that you are in a better place with Jesus. Why does my heart still hurt so deeply...

I feel like an amputee, my arms ache to just hold you. When I look at pictures of you, they seem to come alive as I remember each and every detail of your earthly body. I can almost
still smell your sweet skin up against mine. Your brothers and sisters are changing and growing in their earthly bodies. Your picture remains the same. I do like to think that your soul continues to change the world...

Your oldest brother is learning about the human body and the organs in school. Needless to say, this has brought up a lot of questions about you. We have done our best job to answer them but golly, these are conversations that I never dreamed of having with a seven year old. He wants to know what happened first, did your heart stopped beating or did you stop breathing ? He wants to know why we buried you. He wants to know when Jesus will perform a miracle and bring you back to life?

We attended your sisters Ballet recital last weekend. We cried. We were so proud of her and the way she has grown up so much. She was beautiful. Then we realized that we would never see you perform an end of the year celebration of any kind. No soccer, no cub scouts, no basketball, no drama, no graduations, etc... my heart broke again and again. It is painful to realize the depths of the of the loss of the dreams yet to come. Then one song really got to me, "You'll Be In My Heart Forever" by Phil Collins. Tears streamed down my face and your father's as well.

Come stop your crying
It will be all right
Just take my hand
Hold it tight
I will protect you from all around you
I will be here
Don't you cry

For one so small,you seem so strong
My arms will hold you,keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand the way we feel
They just don't trust what they can't explain
I know we're different but,deep inside us
We're not that different at all

And you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
Don't listen to them
Cause what do they know
We need each other,to have, to hold
They'll see in time I know
When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know we'll show them together

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on,Now and forever more
Oh, you'll be in my heart
No matter what they say
You'll be in my heart, always
Always

I am having difficulty sleeping again. I have nightmares, but sadly, when I wake up they are true. You are still gone... gone from my arms, from our house, from our family photos. One thing is certain, Jeremy you will never be gone from our hearts.

I made a photo collage tonight to take to a memorial service tomorrow. I still cannot fully believe that we are a family that does that sort of thing. I will attend. I will attend to honor your life and the way it changed me.

I love you Jeremy. Thank you son for the lessons that you have taught me.

Until we meet again,
Love and Kisses,
Mommy

May

The month of May has historically been busy filled with graduations, bridal showers, weddings, Mother's Day, the end of school, ballet recitals, Memorial Day weekend, etc. It could really make anyone's head swim.

A grieving mom has enough on her plate just trying to just cope with the normal days. To be a little honest, the added busyness can be both a welcomed distraction and a bit stressful all at the same time.

While each family is different, we have found a little peace trying to make the decisions with regard to planning events, at the very last minute. We are grateful for those special people in our lives that continue to recognize our difficulties making even the simplest of decisions and have given us the extra grace to just "Be As We Are". Thank you for allowing us to make last minute decisions, accepting us as we are if we do attend, and understanding if we don't.

I am in the midst of heavy traffic. I am in survival mode trying my best to stay afloat and keep our heads above water.

Seventy Eight

A few weeks ago, I emotionally began to prepare for Mother's Day. I knew it would be a hard day. It would be a bittersweet day to give thanks for the lives of my four children and the priviledge of being their mother, but I also knew it would be hard since one of those precious babies is no longer within my earthly reach. As it has been in the past, we began by discussing our options. What ways could we choose to celebrate that would allow us to be able to handle the day emotionally. Any choice we could make isn't without pain. The question is always how much pain can we bear? To be honest, certain choices that we could make only have the potential of increasing our pain in the end. We are facing a time where we need to allow ourselves permission to guard our hearts against such pain and to make our decisions wisely. I can assure you that a grieving heart has a difficult time making decisions because nothing feels totally right anymore. Someone very special is missing from the equation and that changes everything.

It was then that I felt it was placed upon my heart to do something for the mothers who would be spending Mother's Day in the hospital this year. I remember so vividly the feelings in my very own heart on Mother's day last year. I remember the pain, fear, sadness, and even helplessness. I also remember love, hope, peace, and compassion. None the less, what I wouldn't have given to be celebrating my very first Mother's Day as Jeremy's mother, at home with him in my arms. That never happened. Sadly it never happened...

So here I am trying my best to move on, all the while, holding onto to the hand of my Lord and Savior. Trusting His word, Trusting in the cross. I am opening my soul to be transparent to witness the Power of God working within me each and every day.

I have thought many times about the depths of pain and sadness that I feel. To this very day, I still feel powerless in some senses. I cannot change my situation at all. However, I have a choice each and every day of what I am going to do with my feelings about my situation. It is not without pain, but I choose life. I choose life each and every day and I have since June 8, 2008.

As I thought about Mother's Day I thought about how I could relate to these Moms at the hospital. I can relate to their feelings, their hopes, their fears, and just about everything inbetween. I also remain so very grateful for all that was done for me and my family during the worst time in our lives. I will never forget the thousands of ways that others shared their love, support, and prayers for our family. I will never forget as long as I live.

Philippians 2: 1 -5

If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus.

Mothers of children in the PICU and the house where we stayed for so long will always remain close to my heart. I can choose to do something to help them. I can carry them to Jesus. I can pray for their children and for their families as they cope with circumstances and pain that are unimaginable and unthinkable to most people. I can show compassion...I can invite others to join me.

The only miracle reported in each of the four Gospels, besides the resurrection, is the feeding of the five thousand. If it is worth repeating four times, it must be worth hearing. What seemed ridiculous to the disciples was in fact simple for Jesus. He said to them "How many loaves do you have?" With the loaves that they had on hand, Jesus fed the hungry. Most of us don't realize the "loaves" we have have in our own lives, the ways that we can help and nourish those who live among us. With the help of God, we can feed and help others in our own lives. If we give what we have back to the Lord we will stand back and be amazed at what he can do with it. God takes our "loaves" and feeds those around us ... This is truly the explanation for what happened to this Mother's Day project.

I invited others to participate . I am merely a vessel. I hoped that I would be able to receive 41 gifts but honestly I did not know if I would or could reach my goal. I gave my desires over to God. Well... God provided all right. He surpassed my goal and all my expectations. It is my honor to share with you that with the help of God and so many other Moms and families, 78 mothers received a Mother's Day bag full of gifts! I said SEVENTY EIGHT! Amazing... tears fill my eyes just thinking about it. The bags were stuffed, we honestly could not fit another item in the bag if we wanted to. Together, we impacted the lives of seventy eight mothers. Seventy seven mothers felt compassion from complete strangers. That is beautiful. We may never know the ripple effect of such kindness when someone needed it most. This most likely wasn't the joyous day that these mothers had hoped for. I can only pray that, even for a moment, that they felt the loving embrace of other mothers who care and certainly found peace knowing that God hasn't left their sides, not even for a second.

So I will close with the most sincere gratefulness and appreciation for those of you that contributed an item/donation or prayed for the success of this project. Thank you for giving your "loaves" of love to share with a mom who really needed to feel loved. Thank you for helping me to have a healthy and productive distraction from my pain.

With a Most Grateful Heart,

Eleven Months

Eleven months have gone by since I last held my son.


There simply aren't words to express the wide range of emotions that rage within my soul. I miss him so very much. That is the one fact that remains constant and true each and every moment of every single day.


In some ways it feels like yesterday that we were in the midst of this horrible tragedy and yet other days it seems like I wait for an eternity for nightfall to arrive to mark the end of a day. Life has continued to move on... Some days it is harder than others. I do my best each day to "Find Sunshine". Today is one of those days when it is just so hard. I have cried until my soul has been emptied out.

I just wish with all my might that things were different.

I have focused on this scripture verse a lot lately. John 14:1 "Don't let your hearts be troubled. Trust in God, and trust in me.

I've been singing this song in my head all day long...Who Is There Like You by Paul Oakley

Who is there like You?
And who else would give their life for me?
Even suffering in my place
And who could repay You?
All of creation looks to You
And You provide for all You have made

So I’m lifting up my hands
Lifting up my voice
Lifting up Your name
And in Your grace I rest
For Your love has come to me and set me free
And I’m trusting in Your word
Trusting in Your cross
Trusting in Your blood and all Your faithfulness
For Your power at work in me is changing me


Yes, I am angry, I am hurt, I am even sad. Yet, in the midst of it all, I trust that Jeremy is safe in the loving care of Jesus and that I will see him again someday.

So here I am Lord, I am trusting in Your cross. Today I will come and bear my soul to you. I will rest and take comfort in Your grace. I will allow myself to be transparent to the world so that others may see the power of Your work within me. I am Your child. My life belongs to you.

Happy Nurse's Week

When you're a nurse you know that every day you will touch a life or a life will touch yours. ~Author Unknown

Just wanted to take an opportunity to thank all of the nurses out there that have touched my life. I am giving thanks for those nurses within my own family, within my friend circle, and certainly those that have taken such loving care of my children over the years.

My family has needed some serious medical care from doctors offices and hospitals more than once. As a parent, there is a fear that resides in your soul when there is something wrong with your child or they are sick and you personally cannot take it away or heal them. I have been so impressed and inspired by the quality of nursing care that we have received during hospitalizations and in the doctors office.

Jeremy spent most of his life in the hospital. He was blessed to have the most amazing nurses in the world. Here's a big hug to each and every one of you! You make a difference in the lives of human kind every day! Thank you for the difference you made in Jeremy's life and in ours! You have a special place in our hearts, forever.

Happy Nurse's Week! I hope that you each feel honored and appreciated for the many ways that you change the world, one patient at a time.

700

It's all about the numbers lately!



Thanks be to God! With the help of many generous Prayer Warriors, we have been able to continue to support the PICU, the children who are patients, their parents and their families in a number of ways. One of our desires was to be able to provide the softest tissues we could get our hands on . It grew from my very own experience in the the PICU with my son and the infinite tears that were shed during his 70 days as a patient there. Our Tissue Fund has been a tremendous success and very much appreciated by each and every person who receives them.



I wanted to update everyone and let you know that I delivered 700 pocket packs of tissues to the PICU today. Yes, you read that correctly, 700! What a blessing!



Thank you all so very much. It makes me cry knowing that we continue to have such support as we do our best to support places that mean so much to our family. We could not do it without all of your generosity.



I promised the PICU I would return with tissues in hand and because of your help, I have been able to keep that promise. I can also assure you that each recipient of those tissues thanks you as well.



On a side note... the Mother's Day project is going well. I am excited to see what the final results will be. I know these Mother's will feel the warmth of your compassion just when they may need it most! There is still time to help... in big and small ways. Please have your donations to me no later than Friday of this week if you plan to participate. Here are a few suggestions of items that might be useful and have not been received yet:



water bottles

single packets of instant cappuchino or coffee

additional chapstick/Vaseline/lip gloss

single packs of face cleaner or wash (Ponds/Oil of Olay etc)

additional small bottles of nail polish (Available at Walmart)

single packets of nail polish remover

additional see-a-word/puzzle books

additional journals/notepads

disposable cameras

paperback books for mom to read/children's book to read to the kiddos

hair clips/scrunchies



Anything else that your imagination and heart may lead you to supply.



Thanks!



With a Most Grateful Heart,

Angel Mail #8

Dear Jeremy,


I am missing you sweet son of mine. I am still finding this whole situation so hard to believe. Some days it is just too much to bear. I am living the life that I have always feared. I am living a parent's worst nightmare. I keep waking up wishing that this was all a bad dream only to realize that it wasn't. I see your angelic face on this very computer screen and I just want so badly to just be able to hold you.


I am missing your place in this family in the midst of everything that we do. As I watched your brothers wrestle around on the floor tonight , I wondered what you would have been doing if you were here. If I close my eyes and just let myself go to that place, I can see you standing there with that special smile of yours. I can imagine you just giggling with joy watching your siblings. I can imagine that at 18 months old, you would be joining in on the fun and I would be reminding your older brothers to be taking it easy on you. Oh how my heart aches to see you learning and growing alongside of your siblings. I loved this age with your siblings. I have spent a lot time this week pondering what you would be like at this age.


We went for a walk in between raindrops and I ran into several people that I grew up with that I haven't seen for a long time. It was hard to catch up and talk about where this ride of life has taken us all, knowing all the while, that the conversation about how many kids we all have would eventually come up. I told them about you...they already knew about you, but didn't know that you were my son. That was hard. I watched all of the kids running around having a good time and my heart wanted to burst just wishing that it was possible for you to be here running all around with them too. I found myself in that same mode of panic as I watched them playing in the yard. I was counting my kids to make sure everyone was safe and I kept getting to the number three. It still felt wrong. A panic still settles into my soul that someone is missing.

Jeremy, you may be missing from my arms, but you are far from lost. You have made your journey home to your forever home with Jesus. You are safe in His care. I just wish my heart would fully accept that.

I wore the shirt with your picture on it this weekend. It was the same shirt that I wore the very day that you ran your "marathon" off of the ventilator. I remember that day so vividly. I was feeling so proud of you and so hopeful of where we would land. I never thought we would land here... Anyway, I also found out this weekend that another PICU friend of yours did not make it and is among your angel friends now. It made me feel sad.


I have been feeling frustrated for the last few days. It seems that I should have better memory skills than I currently have. I seem to remember and visualize things that I wish I would never have known. However, I am also having trouble retrieving memories and data that I want to remember. It is so frustrating. You were only mine here on earth for six months. I want to remember every single second and not miss anything. Sadly, that isn't the case. My mind seems to be acting in a way to protect me from the horrors of this situation.

This time of year has been a lot harder than I expected. We remember such tough times from last year. I even remember the smell of the air. It smelled like hope. I just can't seem to understand that that you have been with Jesus this long...it feels like an eternity since I have held you, yet it feels like yesterday all at the same time. I guess that is in some part due to the fact that it is so hard to move on and keep going without you.

I just feel so very, very, far away from you. It is an unnatural feeling for a Mom. Someone near and dear to us, and to you, was away on a business trip recently. His family was eager for his return and for their lives to return to normal. Tears were streaming down my face as I listened to his wife telling me about how excited she was for his return. My heart was feeling like "yes" I am ready for Jeremy to come home too. Some days I would give anything to just have the chance to bring you home and for our lives to return to our normal. This cross is heavy. Some days I just want to put it down to rest, but I can't. We have been called to this journey and while it is painful, ever so painful, it is what God has chosen for us. You are there in heaven now and I am here with your Daddy and your siblings. God has a plan for us all. No promise for tomorrows only today. I will continue to do my best to trust that His plan is good and that he has a purpose for me here. I will choose to find the sunshine that He creates every day. I will soar with pride that I have the privilege of being your Mommy. I will one day see the whole story.

Until then, as you soar with the other angels, know that we all love you and miss you.

Love,
Mommy

Forty One in Motion

Wow! I am so excited about the response that I have received thus far for the Mother's Day project! I took a leap of faith hoping that I could reach my goal of 41 gifts and as of now it looks like that is very possible. It is looking like I will be able to make 41 gift bags and the contents of those bags is still an open door. I am in awe of the ideas that have come in so far and as I reflect upon my feelings last year, I know I would have loved to receive a bag like these will be! I am filled with such joy knowing that together we will touch the lives of the Forty One mothers that receive our gifts. I know in my heart that they will sincerely appreciate this gesture of love and compassion. If you plan to participate, please make sure all items are delivered no later than Friday, May 8th so I will have time to prepare them for delivery on Saturday.



If you don't know what I am talking about, go back one entry, I describe it in more detail there.

(I haven't learned how to link to that entry. If anyone knows how, please teach me)

With the help and grace of God, I have been given an opportunity to channel this pain and grief into something that has the power to do some good and make a positive difference in the hearts of other mothers. It has been a welcomed distraction from the pain.

Jeremy would have been 18 months old yesterday and I have spent more time than I should imagining what life would look like if he were here with me on earth. I imagine what things he would like and dislike. I wonder which of my other children he would resemble the most. I wonder a lot about his personality. I wonder if he would learn to love the movie Toy Story like my other boys. I wonder how cute he would look wearing his brother's hand me downs... see, the list is never ending. This is where my heart and my soul seem to have difficulty meshing. I am trying so hard to trust that God indeed has a plan for my life. My devotional this morning said " Either God says yes to our requests, or in his "no" He tells us to wait and trust because He has something better in mind for us. Even His no has a loving measure of yes." As you can imagine this is a tough thought to ponder.


I am trying to instead focus my energy on thinking about how wonderful life must be for Jeremy in heaven.