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.

Sweet Benjamin

As we come up on 7 months after losing Luke, I am continually amazed that we are still standing.  It is only through the grace of God that we continue to move forward.  We have had a very special week, but it has taken a lot out of us.  Last Wednesday was another night of counseling for the kids and the support group for Keith and I.  Keith stayed home with Sarah and the boys and I went.  It helps us all, but I come home so tired.  Thursday we spent a beautiful evening at Riley at a memorial service for all the kids that had died a Riley around when Luke did.  A room filled with families that will be ever changed... it was a well done service.  Keith and I were proud to stand when Luke's name was read.  We were struck that this will be the only time that we will hear his name be called in a list- no graduation from high school or college. We usually do not spend much time or energy on what could have been, but that was pretty blatant. Forever stuck in time at 8 years old.  Benjamin sat on my lap and stroked my head as I cried.  He was so tender and loving.  He was sad and touchy on Saturday and I took him on my lap and begged him to tell me what was wrong. He kept saying "nothing" which is not unusual for him.  I gave him some suggestions and I finally said, "Are you missing Luke?"  He got quiet for a little bit and then said in a quiet voice, "Yes".  This has been the first time that he has been able to put together that he was feeling sad because of losing Luke. He has had such a hard time putting together why he feels the way that he does.  It hurts my Mommy heart that he has such a hard time grieving and letting it out.  Our neice and nephew were visiting on Friday and were able to attend a Sock Hop that the student council at the kid's  elementary school put on. They did it as a fundraiser for Make A Wish in memory of Luke.  The kids looked great in their 50's style clothes and were so cute.  They did all kinds of group dances and even had a hula hoop contest!  Luke was a really good hula hooper! He would have enjoyed that part! Keith's brother and his wife and kids stayed for dinner and the kids got to play together. Our neice and nephew spent the night with us on Saturday and we all  had a great time.  Our nephew (who is only 9 months older than Benjamin) spent the night in his room which made him so happy. /He has not gotten used to sleeping alone yet.   Sunday morning Keith's sister and her family joined us at church. We watched the Music/Arts/Drama performance that the kids put on twice a year. The kids used to be involved when Luke was here. It was excrutiating to watch and I had to leave. After I got myself back under control, I was able to watch the rest. It was great and the kids did a wonderful job.  Some memories are just too painful at times.
Last night at work three of my families were really grieving and needed a lot of TLC.  To be honest, I am a little weary of dealing with grieving people- I get a little sick of myself sometimes.  Thankfully I have tonight off.
Samuel has decided to try the track team and school and I hope that is something that he will enjoy.  He looked great doing the warm ups and I am really proud of his effort.  He has been rather uncommunicative lately and really in his own world.  I would love to live in his world for a day and truly see how he looks at the world and those of us in it;
We have recently spent way too much money on our "free" shelter cat, Winston Churchill. We have had him for a year and just had him declawed, and he needed most of his teeth removed.  He was shedding so badly that while he was under, we had him shaved.  A clawless, toothless, and hairless cat.. He is a sight to see! HE has been a "lemon" since the beginning, but we love him anyway...

The Best of Me

We got to a place called "Brooke's Place" twice a month for grief counseling for the kids.  There is a parent support group that meets during the kids session which Keith and I attend.  We have only been three times but the kids have enjoyed it.  I was so encouraged today with Samuel.  He has been so quiet in his expression of grief for Luke and I have been worried that he has not been able deal with it.  The staff at Brooke's place helped him make a memory box which he really got into. Tonight he wanted to fill it, so we went through Luke's things and he chose many special things to fill the box and called it his "precious memories".    He chose 5 pictures to paste on it of Luke.  He placed it on his bedside table so he could see it in the morning when he wakes up.  Then Benjamin took one of Luke's wooden boxes and put a few special things in it himself.   My heart aches for those little boys and what they have lost.  I thought that Sarah would be harder for me- that they never met.  But in truth I have had much more trouble adjusting to the boys.  They were an incredible set of three. Luke brought out the best in both of them and was a champion for his brothers. I thought that I was meeting their specific needs and looking at them as individuals. I was rather enjoying them as a unit, my "pack of puppies".  The easy and comfortable relationship they shared with each other was beautiful and seamless.  I am so proud of Samuel and Benjamin for doing the best that they can to establish a new relationship with each other- it just hurts my Mommy heart.

Last February when Luke was so sick, Keith and I talked only one time about the logistics of Luke dying.  We chose a funeral home, decided what to do with his body, and decided that we would do everything that we could to continue to have joy in our home. We then decided not to have that conversation again until we needed it.  I felt peace knowing that those decisions were made and that we would not have to make them again.  I decided then that I would not bury the best of me with Luke.  I gave it to him when he was alive and I owe it to Samuel, Benjamin, and Sarah to continue to be the Mom I need to be to them.  Those babies are the joy of my life and I do want them to continue to lose. They have suffered enough.  That being said, the hole in our family and in my heart feels so big. There is not a moment that I do not feel Luke's loss. I read in a book an interesting analogy that really feels true-  when a leg is amputated, the wound will eventually heal.  You may even walk again- but you are always missing a part of you and your gait is never the same.  I pray that the rawness of my grief will heal into something more manageable, but the Erin I was died with Luke.  I am a work in progress of the women I am to become. I am trying to take the best of what I was and learn to be the best I can be. Facing the day to come takes so much energy and making the choice every day to move forward is hard.  The kids keep me going.  Sarah is so healing for me.  She is nothing but love for me- her hugs and toothless grins soothes my aching soul.  She felt everything I felt when I carried her and has kept me going after her birth. Making sure Samuel and Benjamin feel loved and cared for motivates me to keep going.  I am trying.

We marked a year a few days ago of the day that we brought Luke home from his lung transplant evaluation. We had no idea that we would lose him in 5 1/2 months.  We felt such joy that day- seeing all tree boys tucked in their beds. We were so thankful that he was alive and so proud of how strong and brave he was.  We knew then that we had seen a miracle. We had time to enjoy him, spend one more summer, and in retrospect, say goodbye. This was God's continuing gift to Keith and I.

Not a big fan of Valentine's day

When Luke was 3 weeks old, in the winter of 2003, he went in to respiratory failure from RSV on February 13.  He spent a week on the vent and gave us a really good scare.  That was when we thought that was going to be the most traumatic experince that we would have with him.  I had some post partum complications that day and spent Valentines Day in the ER with Keith going back and forth between Luke and I. The next year involved several bouts of pneumonia- one being in February, prior to his lobesctomy that spring. A few years later we were in the hospital again the month with the bleeding episodes. This was the month that we took him from the hospital without a diagnosis or any treatment options and started the process of reconciling that.  Skip ahead 2 years... Luke was again placed on the vent February 10th of last year during that third episode of massive bleeding. So sad that we might have been marking 9 years without Luke or a year after losing him. We are so thankful that we were given as long as we were with him, but pretty unimpressed with Valentine's day all the same.
We have had some wonderful things done for Luke recently that have really picked us up from a really bad stretch- many milestones that we have passed without Luke.  The Szempruch family from our church had a star named after Luke- which especially Samuel (who loves space) thought was really cool. We were so touched and honored to have Luke remembered that way.  Brooksschool elementary is going to have a scholarship named after Luke to be given to a senior that had attended Brooksschool. We will never get to send Luke to college, but it means so much to us to be able to keep Luke's memory alive in the kids that do get to go on.  We have been surrounded by such love and thoughtfulness and for that we are truly grateful. My sister in law, Elizabeth, worked very hard to compile a book full of memories, stories, and pictures of Luke.  It is breath taking and I think that I have read it a thousand times already.  Four of my dear friends from college came down this weekend and it was a wonderful distraction. Three of my sorority sisters came earlier this fall. Reconnecting with old friends has been wonderful for me in many ways- but having something to look forward to is a good way to distract myself. I had to change our status on our Children's Museum membership because I could not handle them asking if we had "all three kids with you today".  The kind lady a the info desk changed my card for me and was so kind and gentle about it. Her family had a recent loss and she understood how hard things like that are to do.  We got notification this week that a memorial contribution to Make A WIsh was donated from Luke's "friends at the Children's Museum".  We were so touched and amazed that they would do that in his memory. We spend a lot of time there together and have many wonderful memories. Such beauty and compassion continues to pour into such a big wound for us.
Keith and I realized that we have all had birthdays since Luke died. None of us are the same age that we were when we had him.  The year has changed. I would like to say that things are getting easier, but it is not. We will be marking 6 months on the 29th and I hope each day the weight of his loss will start to ease. I almost wish that I was angry or questioning of God about this. Then I could work through those feelings and make peace with them.  I just miss Luke. There is no healing or working through that emotion. It just is. I am thankful though for my Valentine, a husband that continues to walk this road with me- through the pot holes and all.

Pokagon State Park!

Today we spent a wonderful morning toboganing in Angola, Indiana at Pokagon State Park. My cousin Emily came home from Texas, Uncle David and Aunt Victoria hosted us all. Tyler and Elizabeth brought the kids and we just had a blast. We celebrated Gramma's 83rd birthday (coming up on 2/13), Elizabeth's (2/27), and Benjamin (2/9) with cake and ice cream. Colin and Benjamin (with Keith's help) have made an obstacle course outside. They have been cracking us up!  Family time is so healing for us right now- being around such love helps make our days more tolerable.

Mommy and Sarah Jane at Pokagon State Park

Sarah Jane in her cupcake hat- with a cherry on top!  She was too little to sled, but watched her brothers and cousins go down.

All five of us after sledding- missing Luke today- he would have LOVED the run!

Emily and the Girls

Mom and Lindsay took care of Sarah Jane while we went sledding.