March already...

Two years ago yesterday we brought Luke home from his lung transplant evaluation in St. Louis.  This year I watched Sarah play around the house and sent the big boys to school. How different our lives are. It is so nice to have PTO time built up at work, we are able to plan ahead, and one day looks like the next. It is what we wished for many years.  We are finding the joy and peace of that now.  It is strange to say though that I would throw myself back into the tumult to have Luke back. After a lovely lunch with some friends, I stopped at Riley today to drop off some toys. It is such a sacred place to me.  I have so many memories of Luke there- all the bad, but good too. We had so much time together those long days in the hospital. When he felt up to it, we would read, watch TV, laugh, and watch The Price is Right at 11:00. He died there and his spirit left us in the South PICU. Sacred.

From November to now has been a hard stretch for me, but I am feeling good right now. Settling into working full time much better and am doing a better job "Getting it Together".  Keith continues to be the rock that our family stands upon.  He has amazed me how much  he gives to the kids and I.

Benjamin is lonely right now and very sensitive. He has friends and of course Samuel, but he misses his best friend.  Sleeping continues to be an issue. We have to lay down with him every night and if we do not sleep in his room all night, he will come into ours if he wakes up. I feel so helpless to make him feel better. I keep hoping time will be what he needs.

Sarah Jane is amazing- a TOTAL toddler, but delicious all the same. She is into everything- especially toilets, toilet paper, the recycling bin, trash can, and drawers. She loves to "write" with pens on paper (or her belly), loves to read (the same book over and over), and dances. She has discovered Elmo and loves her princess castle.  We are loving having her so much.

Finding so much happiness in what I have. I am so overwhelmed at what my life would have been if we could have kept Luke.  Could one person really be that blessed?

Project "Get It Together" 2013

Project "Get it Together"

Make A Wish Walk in July

Christmas

As we start 2013, I announced that this year starts Project "Get it together".  Goals include: showering everyday, wearing makeup, and losing 30 pounds. I sit here writing at 8:24 PM unshowered, wearing no makeup, and eating a cookie. Sigh. Thankful the holidays are over- they hit me hard at times this year. I brought 2013 in with tears as I did 2012.  Each year takes me farther away from Luke- but hurtles me forward with the pleasure of raising Samuel, Benjamin, and Sarah. In 2013, Samuel will turn 12, Benjamin will start 3rd grade, and Sarah will learn new words. We carry Luke along with us, but there is nothing new to celebrate. Only precious memories (as Samuel calls them).  Luke's birthday was the 24th of January.  We are going to mark that day in a few weeks. We do not "celebrate" Luke's birthday- he is not having it. We acknowledge the day for what it is- the beautiful day we welcomed his body and spirit into our arms. 10 years ago...  Two weeks later we will celebrate Benjamin's 8th birthday. He is such a lovely little boy. He is looking forward to running track in the spring. I always read these blogs back and wonder if I sound as bad as I think I do.  We really are still standing- we laugh, we have fun, we even occasionally even complain about stupid things. Maybe someday it won't feel so raw. ""

We are officially back up and running!  Our faithful netbook bit the dust a few months ago, and we have finally been able to get a new lap top. It is difficult to try and type a post on my phone! It has been a few months since I posted. Sarah Jane celebrated her first birthday in September- we had a cherry themed birthday party.  She is growing beautifully and continue to be such a joy.  Samuel is doing great in 5th grade- the transition to intermediate school went smoothly. We celebrated his 11th birthday in October. When did he get so old?? We were unable to go to Chicago this year like we usually do because we had a conflict on that weekend.  The Lions Eye Bank held a luncheon to honor all the cornea donors in the past year, which included Luke.  We were able to share a picture of him and a short blurb about him. We then were able to find out that his corneas were both successfully transplanted into two people that live in New York. They both regained vision because of Luke. We were overwhelmed with thankfulness that Luke's beautiful brown eyes have improved the quality of life for two people. Benjamin is enjoying 2nd grade and doing well- especially in math.  We had a great time this fall watching him run cross country for the first time.  He placed 5th at the State Tournament and then went on to the regional meet in Chicago.  He placed 12th and qualified for Nationals in New Mexico!  I did not work out for us to go our West, but we were so proud of his hard work and effort that helped him go that far.  He and Keith run together a lot which they both really enjoy. I started working full time in October which has been a VERY difficult transition. I am getting used to it and am so thankful that Keith is such a rock star Dad. He is by himself three nights and mornings a week and does an amazing job. We are in our second round of holidays, events, and plain life without Luke. Thanksgiving was hard this year- last year we took the boys to Disney World and just kind of escaped. I found myself in Mejier last month buying some gifts for the boys when I found something that I thought Luke would like- before I caught myself. I then realized that I was shopping for an 8 year old Luke. Luke would be almost 10. What would be into now? What would be enjoy? I don't know 10 year old Luke. I had to smile though. His "Somewhere Over the Rainbow" song that we played at the funeral came on over the speakers. Coincidence I am sure, but it was pretty amazing. I cannot say that missing him has gotten any better. Life is not easier. But I am learning how to live without him. We have done our best to enjoy the holidays- remembering the past and making the present special for the kids. We are so blessed and thankful this holiday season. Blessings to all! Erin

Luke's Homecoming Day

On August 29th, 2011,at 810 in the morning, Keith and I sat next to Luke's bed in the PICU and watched his heart stop on the monitor. We held his hands and let him go Home.  I am not sure how we did that, but we knew it was the right thing to do. They had resusitated him several times and he was at the maximum dosage off all the different medications they could give to keep his heart going.  They were not working- his lungs had failed which caused his heart to fail. We did not have to take him off the ventilator. His lungs were unable to exchange oxygen even though the ventilator continued (at maximum settings) to breathe for him.  The choice for him to let go was not ours to make, but we were able to give him a dying experience in which I layed in bed with him and rubbed his head, hands, and his chest around the chest tubes. His family was able to gather and say good bye. I put his hands to my belly to feel Sarah Jane. Our pastor led us in prayer.  Benjamin and Samuel both got a chance to touch him one more time and say goodbye.  When we could see he was close to passing, we asked everyone to step out of the room and Keith sat on one side and I on the other and we held his hands. That was the end of our earthly son, and we gave him back to whom he came from,  A year later we are so thankful that we ever had him- that beautiful boy.
Keith, Samuel, Benjamin and I lit a candle at 810 in the morning this 29th to start our day.  We served a lunch at the Ronald McDonald house at Riley in honor of Luke. It felt good to give back.  In the evening, we had a small gathering at the cemetery and had a dove release, readings, and a balloon release for the kids.  We shared several of the poems that Luke's friends wrote for him.  Keith and I both shared. Mine was as follows:
My little Bear,
 I continue to be overwhelmed by how much I love you.
I am so proud of you each and every day.
My heart longs for you, but in truth, you gave me enough joy to last a lifetime.
You were a son that anyone would long for.
I enjoyed you so much- your humor, your love, your thoughtfulness.
It has been a struggle dealing with your absence.
I miss what you brought to our family,
But I remind myself daily that there are no "whys" in God's world.
We have tried to sit back and watch the fruit of your life be harvested.
There are babies in the world because of your influence.
You have led people to Christ or helped strengthen their relationship with Jesus.
Mothers have hugged their kids a bit closer.
There are people who have nominated kids for a Make A Wish because they heard your story on the radio.
Your memorial donations have granted several wishes.
Your presence in Heaven has given people comfort that you are with their loved ones.
You have encouraged acts of kindness done in your name.
We hope to continue to see the beauty that has risen from the ashes of your death.
You are more that my sick little boy who died- you are a joy, a triumph, a blessing, and a gift.
Daddy and I saw what you lived with every day.
We were amazed to watch how you dealt with the bleeding and the limits of your breathing.
I wish more people really understood how brave you truly were.
You rose to the occasion each time you needed to.
You did everything in this world that you were asked to do.
You dealth with the disappointment, pain, anxiety, and the fragility of your life with an uncanny awareness.
You are my motivation everyday to stay in the land of the living.
All you ever wanted to do was to just live your life- your disease may have taken your breath away, but it never got the best of you spirit.
I never took the best of you away from me.
Your last words to Daddy and I were of love and courage.
You found the best in each day and you motivate me to do the same.
You see fully now why this happened to you.
I am content that you can carry that for me until I see you again.
I can imagine your excitement when you hear that I am coming and you can show me what you have been up to.
And then I can hold you again.
Until Lukey, I will live my life with your soul in my heart.
I will parent your siblings with all the love I can.
I will continue to see you bear fruit in this world.
I love you, Luke- then, now, and always.
Your Mommy

Facing Future the sequel

  We are now at 11 months since Luke died. The Make A Wish walk felt like the start of the time period that counted down to Luke dying. We had a wonderful day with many friends and family who walked with us during the walk and many who donated to Luke's team. "Luke's Pineapple Express" has raised a little over $4,000 and we are so grateful.  Luke would have been thrilled and so excited. He had wanted to have t shirts made last year, but we did not get around to it.  We did it up right with bright yellow t shirts with a pineapple on it, the name of the team, and the saying, "Make A Wish made Luke's dream come true".  We missed him so much that day, but we know that we are doing what he would have wanted us to do.  We are gearing up to go back to Ocean City next week. Very mixed emotions about it. The boys are really excited and we love to see Keith's family.  That week was hard in many ways with Luke. Keith and I really saw the decline in him that week. Things changed almost as soon as we got home, We had some very special time with him and he had a blast with all of his cousins. Things are never the same without Luke, but it does not mean they have to be bad.  Life was just that much sweeter when Luke was in this world. Luke gave us enough joy to last a lifetime.  We try and concentrate on that more than the "what ifs" if he was still here.  I feels very real to me that he is not here, but I have to take a moment to grieve the loss of him when I buy two pairs of school shoes. Two sets of school supplies. I fill out two forms to register for VBS. I have a hand for each boy to hold.  Life was just that much sweeter...
Sarah Jane is amazing. We just eat her up. She loves her brothers and cries when Benjamin  leaves the room sometimes.  She is her Daddy's sweetheart.  She is like food for my soul. Our little "cherry on top" is living up to Luke's expectations.  I watered Luke's flowers today on his grave and when I opened Sarah's door to get my watering can, Sarah was waving Hi to Luke- or at least looking at his marker and waving. I hope someday she can understand who Luke was and how much he loved her.  I cry everyday for Luke, but I laugh every day.  I enjoy Samuel, Benjamin, and Sarah. Keith and I plan for the future as we talk a lot about the past.  We have been able to move past a lot of the trauma of Luke's last weekend and allow ourselves to let those images fade. Luke is so much more than a little boy who died, as we are more than parents who have lost a child. Luke and the loss of him are woven in to the story of our family.  I will never feel the same as I did when he was here, but I am filling that hole with the joy that was Luke. What a lucky Mommy I was/am.

Lost for words

Writing was so helpful to me when Luke was here and I am so thankful to have that record of his last 3 years.  Now I am finding very little ability to put what is in my heart down. Overwhelmed a lot with very conflicting emotions. I am missing Luke so badly, am enjoying Benjamin so much, so proud of Samuel and who he is becoming, and am busy with Sarah- enjoying her babyhood.  So many wonderful things, yet there is a big Luke sized chomp out of everything. At Brooke's Place last night, one of the other moms and I were talking and reminded each other that you never get "used" to your child being gone.  You never get "Over It".  Time does not heal all wounds.  They may scar- but they never heal.  Although Luke is in Heaven and happier than we could ever be, I am selfish that I was not done with him. His brothers were not done with him, and his sister never got a chance. I have to trust and believe that God has a plan for all of us and someday I will understand. Matt (our friend and pastor) said at the end of his eulogy at the funeral some words I have carried with me daily. Luke is fully known and fully sees.  I had a daydream the other day and imagined Benjamin as a husband and father. Maybe he will have three little boys close together and he can enjoy watching them grow up together- something that he did not get to do. That would be precious.  I find it troublesome to my heart as time passes how I will be able to continue to fit Luke into this world.  Right now I can say, "Luke would have enjoyed that" but what do I say in 10 years?  Eight year old Luke would enjoy that, but what would have 18 year old Luke been like?  We have a finite amount of stories, memories, pictures of Luke. Never more.  No 40 year old Luke with kids and a mortgage. Forever my little boy. How is that going to feel in 15 years, 30 years, 5 years? Taking each day a step at a time. Trying not to be jealous of intact families. Cutting myself some slack about a lot of stuff.  Trying to get back into life. Reminding myself that I do not need to pick one emotion. I can be truly thankful for what I had and so completly sad that it is gone all and the same time. There is never a day that I am not thankful to be the mom of those 4 beautiful children and the wife of my husband. I wish that gratefullness was enough to fill the empty spot in my heart.

Disaster Pants

"Disaster pants" is our new nickname for our little princess.  Sarah is crawling everywhere at light speed. She eats ANYTHING she can find on the floor. I have swept more in the last two weeks than I have in years! She was 8 months on Friday and doing all kinds of fun stuff- pattycake, waving bye bye, sticking her tongue out, and Benjamin's favorite- raspberries!  She is so funny and very sweet.  She has had a pretty rotten cough at night for the past few weeks which always makes me nervous.  I do not have much reserve for any kind of lung issues anymore.