Lincoln, Life, and Loss

My husband and I had the opportunity to have a little "us" time yesterday and decided to see the movie Lincoln at the local cinema. We had heard so much about the film - as I'm sure all of you have, too, and were looking forward to seeing it. I read some of the information about reactions to the film, and was aware that it centered around the former President's efforts to abolish slavery. I was prepared for a stellar performance by Daniel Day Lewis and looked forward to seeing one of my all time favorite actesses (Sally Field) in action. I have always been fascinated by our First Ladies. Where our Presidents have had the ability to decide whether or not to run for office, it is their election that catapults their wives into the public eye whether they are ready for it or not. I have read several books about the stories of these women - in particular, Hillary Clinton, Nancy Reagan, Lady Bird Johnson, Jacqueline Kennedy, and of course Mary Todd Lincoln. Truth be known, I was more interested in seeing her role in this movie than his.

The movie, of course, was fantastic. It was a little drawn out on some of the political debating for my tastes, but my husband assures me it was very well written and very true to form for the men that were emphasized. We expected debates, and we got them. What I didn't expect... What completely took me off guard and hit me to the core, were the two scenes in which Mrs. Lincoln grieved over the loss of their son Willie.

William Wallace Lincoln died in February of 1862 at the age of 12 of an illness described as "most likely typhoid fever". The movie was set in January of 1865, making the Lincoln's three years bereaved at the time of the vote on the 13th Amendment. Almost exactly the amount of time that has passed since we lost Henry.

When Henry died in 2009, I was so lost. I didn't know how to live. How to keep breathing. Every breath I took was a physical effort. I had to remind myself to do it. There would be times when I would gasp for air because I would forget to inhale for a bit. It seems odd that something so ingrained would be forgotten, but it happened. As a semi-related side note, the song "No Air" by Jordin Sparks is one of the songs that will bring me to tears and has since the first time I heard it after Henry's death for the exact reason described above.

I was determined to keep living my life for Jack's sake, but although my head was convinced, my heart wasn't sure I was up to the task. I looked for comfort in the most unlikely of places - the cemetery. After Henry's funeral, I found myself wandering around the cemetery, memorizing the names of the people he now took up residence with. I would try to piece together different family members of strangers and figure out how they met. I'd calculate the years between the death of a child and the death of his or her mother. Then I'd think, ok, she lived forty years past her son's death. If she can do it, so can I. I found one woman who had buried three sons and was still living. I wanted to call her and ask her how she managed, but even in my grief state I realized that might be a little too stalker-ish. How would I even start that conversation? "Ma'am, you don't know me, but I found your stone at the cemetery..." Umm, no.

At this point, needing more information (or inspiration) than just dates and life spans, I turned to the celebrity bereaved. For better or worse, the lives of those in the public spotlight are kind of an open book for anyone to read, and I took advantage of that. The first person that came to mind given my life long fascination with our First Ladies, was Mary Todd Lincoln. I started reading book after book about her life and her children's deaths (three of her four sons died at age 18 or younger). I read about her grief and about her life after their deaths. Although she handled her grief much differently than I hoped to, my heart still went out to her and I've often wondered if her insanity that came with later life was simply a defense mechanism to save her broken heart after burying three children and a husband.



It is often said that time heals all wounds. I disagree. Time does nothing more than put distance between you and the epicenter of your pain. It puts a bandaid on your wound. You feel better, but at any moment a turn in life can rip that bandaid off and there you are with that open wound again, just as painful as ever. Thankfully, each time the bandaid is removed and the wound re-opened, you become more adept at first aid and can more easily transition back out of grief to that more comfortable state where life and emotions seem somewhat under control.

Where breathing comes naturally.

Lincoln is a fantastic movie. My husband and I both enjoyed it and the acting was superb. I encourage everyone to see the movie and allow themselves to be engulfed with such an important man and moment in our nation's history. I only ask that when you do, you also allow yourselves a moment to grieve with the Lincoln's  and raise a prayer for this family that gave so much to our country despite their personal heart aches.

On the off chance that anyone else seeks out fellow bereaved parents for inspiration in their own grief journey, I encourage you to also look to the lives of:

Bill Cosby (Ennis, age 27), John and Elizabeth Edwards (Wade), Joe Biden (Naomi, infant), John Travolta and Kelly Preston (Jett, age 16), Sylvester Stallone (Sage, age 36), Marie Osmond (Michael, age 18), Eric Clapton (Connor, age 4), Kirk Douglas (Eric, age 46), Barbara Eden (Matthew, age 35), Carol Burnett (Carrie), Mike Tyson (Exodus, age 4), Vince Neil of Motley Crüe (Skylar, age 4), Dr. Dre (Andre, age 20).

In addition to President Lincoln, at least 23 other Presidents have buried children during their lifetime, including Ronald Reagan, George H. W. Bush, and John Kennedy, just to name a few.

Some day I would like to create a blog post detailing all of these individuals and their stories, but that is a post for another day. In closing, I will say to my bereaved readers that if you are looking for modern day inspiration in hopes of life after loss, look to former Biggest Loser contestant Abby Rike or the now deceased Mrs. Elizabeth Edwards. Elizabeth was very active with The Compassionate Friends and very open about her grief journey.

This morning, while watching Good Morning America, I saw footage of Robin Roberts returning to her home in New Orleans after her surgery and I heard her say, "My mama always said, 'Make your mess your message.'" It should come as no surprise that I got tears in my eyes. Abby and Elizabeth have done just that, and I hope to follow in their footsteps and do the same.

God bless,

Memorial Christmas Ornaments

A few weeks ago we received a post card from our family cemetery letting us know that they would be placing memorial Christmas trees in their chapel area and we were invited to bring ornaments in memory of our loved ones. We are blessed to have known many people who were laid to rest at this cemetery and I truly wanted to make ornaments for every single one of them, but that just wasn't practical. Instead, I chose a select few. We (my mom and I) didn't want to spend a fortune on the ornaments because no where on the invitation did it say whether or not we'd be able to retrieve them at the end of the season.

We bought plain, solid colored balls (a box of 8 for $4.95!) and headed to my craft room where we used paint pens, punches, and ribbon to personalize them. Each ornament got a double ribbon tie at the top, a name, and a hang tag. On the front of the hang tag was our loved ones full name and as much of the birth and death information as we had available to us, and on the back of each tag was a short personal message from us to them in heaven.

In addition to that box of 8 ornaments, I also purchased two separately. There was a lady at a local craft fair would painted names on ornaments for $5, so I bought one for our son Henry in orange (his favorite color) and added an orange ribbon and a paw print ribbon, keeping with his love of animals.

I also found a snowflake at Hobby Lobby that I just couldn't resist for my goddaughter Kejerah, who died at two months old of SIDS. I couldn't write a name on the snowflake, so I just hung the tag from the bottom and attached a small burgundy stitched ribbon at the top. Simple, but perfect. It was a snowy night, the night Kejerah died, and I always think of her when it snows even now. I'm sure I always will.

And here is the set of 8. We really weren't sure what to expect in terms of what other people would be doing. It was nice looking through the trees (as much as we could with a four year old in tow). There were shaped ornaments with no words whatsoever, and others that had names and dates on them. A huge variety. We may reuse these next year, but we may also swap them out for more meaningful ones for each individual person. A flamingo for my grandma (she HATED lawn flamingos... it got to be a standing joke between the two of us that we'd buy each other flamingo stuff when we saw it. :)), maybe a fish for my grandpa, the master fisherman. A daisy for Cheryl, our cousin whose life ended far too soon after a courageous battle with cancer, a cardinal for Aunt Ferne, the most recent relative to join our heavenly family less than a month ago.... We'll have to wait and see what we find. Or, maybe we will keep using these but add on for other friends and relatives we didn't cover this year. Time will tell.

In loving memory, this Christmas and always, of Henry, Kejerah, (Great) Grandma (Bessie) Hank (yes, we called her by grandpa's first name... weird, I know.), Aunt Ferne, Grandpa (Eugene or "Eug"), Grandma (Wilma), (cousin) Cheryl, (Great) Grandpa Hank (Henry's namesake), (Godfather) Rick, and Aunt Mamie.

May you rest in peace. 

Reflections: Infusion Day

I'm typing this as I sit at Children's Hospital of Wisconsin with Jack, passing the time as I listen to the pump that is delivering his monthly IVIG treatment into his veins. Jack is busy watching a Baby Einstein DVD of all things, and I'm left to think.

Next week marks the three year anniversary of our first infusion. It was the day before Thanksgiving when we got the call alerting us of Jack's immune deficiency and informing us that we had to come to Milwaukee immediately and spend the night while Jack received his first treatment. Imagine our horror, not even three weeks after burying our oldest son (whose cause of death and autopsy results had not even been made known to us yet), to learn that our other son also had a potentially life ending disease. I was numb. I never wanted to set foot in this hospital again, but I had no choice. In a matter of hours I would be walking that same skywalk that I walked out three weeks earlier to a car that still held two car seats though only one of them would ever hold a child again. I cried as I turned off the highway and saw the building come into focus. I cried as we walked the skywalk to the desk clerk who told us which room we were being admitted to, and then again when we passed the large bank of windows that looked over the helipad where Henry's little body was resuscitated the night of November 1. Needless to say, it was a difficult trip. 

We learned at that visit that Jack had Bruton's x-linked agammaglobulinemia, and that these visits would be required every three to four weeks to build up and maintain a sort of false immunity in him. Though they would no longer require overnight stays, they would still be all day endeavors and required a good number more visits to Children's Hospital than any parent ever hopes to make. I felt sorry for Jack, who would have to endure these treatments and pokes for the rest of his life. I felt sorry for my husband, as I saw the emotional strain this placed on him and, I'll admit it, I felt sorry for myself. I didn't ask for this. I didn't *want* this. This is not what we signed up for when we decided to have children and start a family.

All of these visits though - I'm estimating about 40 so far, as we started coming every three weeks and then switched to every four weeks - have given me perspective. I am not alone. I am confident that every patient and patient family that walks through those doors wishes they didn't have to. I've also learned that despite how devastating our situation is, it could still be worse. 

Today's treatment is winding down, and I will walk out that same skywalk as we return to the car. I still think of Henry, and mourn that loss every day as I will until the day I draw my final breath, but I know that he is with me both now and always and there will be no tears today. I don't feel the overwhelming sense of loss anymore when I walk through these hallways. I feel hope, comfort, kindness, and empathy. Time has eased nothing, but the perspective God has granted me these last three years has afforded me the opportunity to adjust the weight of grief and make carrying that weight a little less burdensome. For that, I am grateful. 

Children's Books For A Cause... Please Share!!

As you likely know if you've been following this blog for any length of time, my husband and I lost our son Henry three years ago to an undiagnosed immune deficiency disorder. In short, Henry woke up sick on Friday morning, October 30th, 2009, and closed his eyes for the last time three days later, aged three years and four months old. He was an amazing little boy, so vibrant and happy, always smiling, and he loved animals. "Aminals," as he called them, were his life. Every day I would take him and his brother Jack to the little zoo in town and walk around the circle. Sometimes we would go twice a day, because he loved it that much. He was always very concerned about the animals. If boys three times his age were being mean to the animals, Henry had no problem telling them so. "Be good to the 'aminals'!" was his mantra, and I heard it more than once in his short life.

At night my husband, Darrin, and I would share bedtime duties. Henry had a three part routine that required first Mama, then Papa, and then Mama again one last time. During "Papa time," Henry would describe the animals he saw that day and their antics, and he and Darrin would conjure up bedtime stories about the animals, always interjecting Henry into the stories to remind others to treat them with kindness and respect. Henry always saved the day. 

After his passing, we decided to publish these bedtime stories in memory of him, and created the Adventures of Henry book series. We published our first book, Timmy The Goat, two years ago and have since published two more - Mikayla the Wolf and Sam the Snake; all based on stories my boy created with his Papa. The books feature animals who share their names with other children (and at least one adult) battling rare diseases, and in the back of each book there are pages dedicated to these people and the conditions that affect their lives. Among the children featured is our other son, Jack, who shares the same immune deficiency that claimed Henry's life: x-linked agammaglobulinemia. The books also include "Teachable Topics" about the various locations and animals that are mentioned in each book to help parents further educate their children about some of the animals and places our Henry enjoyed learning about. The books are geared toward elementary aged children, and the reviews we've received from friends, family, and strangers - adults and children alike - have been excellent. Not just for the stories and the message behind them, but also for the quality of the books themselves. 

Our intent in publishing these books was threefold: to honor Henry, to help raise awareness for rare diseases, and to raise money for the organizations that help the children who are afflicted by them. Profits from the sales of these books will be donated to organizations like Children's Hospital of Wisconsin, and the Crohn's and Colitis Foundation of America, who work persistently every day to find cures and treatments for these kids and so many other children like them. 

What is breaking my heart is that after nearly two years of diligent book sales, we have yet to become profitable. We attend book fairs and vendor events at every opportunity and are blessed to be able to sell our books in several local retail outlets in addition to our own website. Yet each month we pay out upwards of $300+ dollars in storage, publishing, and vendor event costs. At $15 a book, we are still far from being able to hand a check over to these organizations in Henry's name and bring some closure to his death by helping others on his behalf. Vendor events are unpredictable, and we never know going into one exactly how many books will sell. Some days we are closer to zero, and some days we are closer to one hundred. Darrin and I sell the books ourselves, so our time is limited to the weekends he is not in school (he has returned to college for a masters degree in biotechnology in hopes of finding a cure for our son, Jack) as one of us has to stay home with Jack while the other is out selling books. It makes for slow going. 

This is where I am praying you can help. I'm wondering if you could do me the favor of sharing this blog post. Share it on your blog, via email, or with specific friends you know who are well connected or also have social media platforms on which to spread the message far and wide. We have approximately 4000 books left in stock between all three titles and every one of them would make a fantastic Christmas gift for the children on your gift list (or their teacher or daycare provider!) this holiday season. An inventory of 4000 books is nothing for large retailers, but for one local bereaved Mama and Papa, it might as well be the weight of the world.

Can you please help us find homes for these books this Christmas?

I told my husband I was determined to sell all of them by Christmas, but I can't make that happen without a little help from my friends... and their friends, too! Even if we could put a massive dent in the stock it would help us to have a more manageable inventory that we could then relocate to our home and thereby stop paying our monthly storage fees, eliminating one profit-eating expense. And if you're wondering, we need to sell about half of that inventory - approximately 2000 books - before we are profitable and can start sending checks out to these organizations in Henry's name. I sooo can not wait for that day to come!! 

We aren't in this to make money for ourselves, that was never our intent. We simply want to give something back to a medical community that has helped us navigate our way through hell and back (from the death of one child and the almost simultaneous diagnosis of the other), all in the name of one of the sweetest little blue-eyed blonde-haired boys you could ever know. 

These are our books: 

Here are some specifics about them: 

• Title 1: Timmy the Goat: Spelunking Adventure 
• Title 2: Mikayla the Wolf: Awakening at Yellowstone
• Title 3: Sam the Snake: Refuge at Bureau Creek
• Cost $15.00 each 
• 8" x 8" in size
• Fully illustrated in color by local (NE Wisconsin) sisters Sonja and Eve Funnell
• Approximately 48 pages in length
• Available for purchase at www.shop.adventuresofhenry.com 
• FREE SHIPPING on all US orders through December 31, 2012 to help move inventory!!
• Gift wrapping is available if requested (note at payment, or message us at our Facebook page)

If you don't have a child in your life to buy for, consider purchasing one or more books to donate (there is a donation option listed at the website above). We can send donated books to you, to a donation location of your choice, or deliver them to Children's Hospital of Wisconsin for distribution to the various clinics and patients as hospital staff sees fit. 

Thank you so much for reading this, and for helping spread the word in any way possible. You will never know how much that means to us.

For blog posts about my grief process as a bereaved mother, Henry's life and death, and photos of our boy, please click {HERE}, or click the "Henry" label on the sidebar.

God bless you and your family, 

Working It Out



I just finished reading another book about life and the grief process and thought I'd share it and a little story here since I haven't updated this blog in awhile. The book is called Working It Out by Abby Rike. Does anyone remember Abby from her season on The Biggest Loser? She was on the year Danny won, and was roomates with Shay - Season 8, which aired in the fall of 2009. I vividly remember watching the contestants introduce myself and her tear filled account of the accident that took the life of her husband, 5 year old daughter, and 18 day old son. I was heart broken for her and wondered to myself how she ever managed to move on from that experience. How she could move on from losing a child. Little did I know that before the season was over, I would be learning first hand.

After we lost Henry, Abby was one of the first people I thought of. I searched for her on Facebook and found the fan page that is run either by her or on her behalf and later posted a comment in the "death of a child" discussion area letting her know that she is in my prayers and thoughts regularly. I knew she had a book in the works, and was anxious to read it when it came out in May. Well, one thing led to another and me and reading didn't actually do too well together over the spring and summer. I've always been a book worm, but as Jack gets older and my daily window of free time gets smaller, I find I have time for only one hobby at a time and this year it was embroidery. I finally ordered the book a week or so ago and when it arrived, I finished it in a matter of days.

Sometimes, when I'm thinking about Henry and all that has happened to us, I am dead inside. I don't cry, I just feel empty. I have felt often that this feeling of emptiness makes me a bad mother. I should have some level of emotion, but it usually is not there. There are other times though that the emotions are so strong they are almost violent and they scare me to my core. It's a roller coaster in the truest sense, and it never ceases. Reading Abby's book, and seeing that she experienced the same types of highs and lows helped me to remember that I am normal. I am not a bad mother, I am not in denial. I am simply working through my emotions as they come to me, and that is enough. I in no way believe our situations were equal, but I do strongly believe that grief is grief, if that makes sense, and in that respect we are similar.

I also felt a deep connection with Abby because of how steadfast she has been in her faith through the last five years. When the doctor took my husband and I into the small conference room and sat down with us to tell us there was nothing more he could do, my first thought was not despair or destruction, but rather, I thanked the Lord that I was raised in faith. I thanked him silently as we sat there for blessing my life with a mother, grandparents, and great-grandparents who were all Christians and who went out of their way to ensure that I knew I was a child of God and that he would not forsake me. If it were not for that knowledge, that blessed assurance, I can honestly say I would not have been able to rise up out of that seat and walk out of that room under my own power. I swear to you with every fiber of my being that Jesus was in that room with us, and it was then that He carried me.

Abby wrote something in a journal entry two months after the accident that she shared in her book. It struck such a chord with me, I am going to share it here with you all, for I could have written these words myself.

What now? What do I do now? What plan does God have for me? If I have to suffer like this, then I want my life to matter. I want to know what I'm supposed to do. I want to know my plan. I am shattered and I'm trusting with childlike faith that God will put me back together again. This loss cannot be for naught.
~Abby Rike, December 3, 2006

I cried when I read that. And I don't mean those sweet little tears my grandma used to shed and discretely wipe away with a tissue. I mean I CRIED. I bawled. I gave a full on "ugly cry", as Oprah likes to call it. The topic was something I had often thought about, but never had the words to express until now. Instead of Why me? I have often felt What now? What am I to do with this lot in life? How can I use my experience to help others? I have put a lot of thought into bereavement counseling, but I'm not sure I'm up for more schooling with three unused degrees on the wall already. We've thought about fostering or adopting to help another child, but don't feel a strong draw to that calling either. I largely still feel like I'm floating in a vast ocean with no real direction as to where the dock may be. I have no specific goal other than my focus on raising Jack, preparing to educate him as a home schooling mom, caring for and loving my husband, and keeping our home up. I reach out to different areas and play them out in my mind, but nothing fits. Square pegs, round holes. I am almost morbidly drawn to history, bereavement, death, and dying, but how can I fit in there? Since losing Henry I have also developed a keen interest in heaven, health, and organized living, but again, I'm seeing no strong direction for my life. These are the answers I pray for.

Abby also spoke to my heart when she quoted passages from Job about the people who "sat in the ashes" with him. I have heard before from different people that our story is reminiscent of Job's story, but never took the time to think it through very well. Abby's stories about the love that surrounded her and the people who "sat in the ashes" with her - just being present without trying to offer advice or wisdom or ramble because they don't know any other way to fill the space - reminded me of the dear friends and family members we have been blessed with who did the same for us. It is truly humbling to think about.

Finally, Abby speaks about her experience on the Biggest Loser and her efforts to reach and maintain her goal weight - another topic near and dear to my heart. To say this book and this woman are an inspiration to me would be an understatement. I am not in the habit of building a library, and frequently pass books on to friends once I've finished them, but this copy of Working It Out is mine and will remain as such for a very long time. I hope you'll check it out. I think it will move you, regardless of your struggle.

If you could also take a moment to pray for Abby and her family this week, that would be wonderful. Thursday, October 13 marks the five year anniversary of the accident. I'm sure they can use all of the prayers they can get to help them through the upcoming days. For more information on Abby Rike, you can visit her personal website HERE. Check out her calendar and see if she's speaking near you. If she is, consider me jealous. I would love so much to meet her in person, but I have yet to figure out exactly how to make that happen. I will be praying about it, and if it's meant to be, I am confident God will find a way.

God bless,    

P.S. Please pardon my lack of blogger knowledge. I can't get this post left justified for the life of me. Except for this post script, that is. Go figure.

Heaven Is For Real

I am not much of a book reviewer, and when I do share books with my readers I tend to do so on my craft blog, because I think of reading as a hobby and that is where I share all things related to my hobbies. But given the nature of this book and the nature of bereavement, I thought it seemed more appropriate to talk a bit here about it instead.

Heaven Is For Real by Todd Burpo is a short and sweet book that was gifted to me recently (well. semi-recently) by one of my girlfriends. She read it herself and knowing that I enjoy reading about first hand experiences with heaven - particularly since we lost Henry - thought it would bring me some comfort... and she was right.

For starters, I loved the book. I loved the story and the experience, and the fact that this family did not have to go through the experience of losing a child. Praise God for that! I enjoyed reading Colton's account of his visit to heaven and the comical way in which his dad related the stories as bits and pieces of the experience was revealed to them.

The struggle I have with this book (and others like it) is that it leans heavily on the fact that God answered their prayers and saved their child. While I am eternally grateful that He did that for ANY family, there is a part of me that always asks... why not mine? The book talks about how the family was prayerful and the church held special prayer vigils and so on and so forth and that collectively their voices reached God and their prayers were answered. Well, we prayed, too. When Henry was in the emergency room and I was kneeling at his bedside beside his little head because it was the only space in the room that was not occupied by a doctor, nurse, priest, or some other support staff, I prayed until I was on the verge of a black out from exhaustion, and then I was moved to my own bed where I lay with the hospital chaplain at my bedside and prayed some more. Our friends were praying, our families were praying, churches, strangers, even an entire village in Vietnam (true story) and many others we don't even know were holding prayer vigils for my boy.... but he still died. Our prayers weren't answered. As I read, I struggled more wondering why not. Because he (Todd Burpo) is a pastor? A better Christian? The right denomination? Does he know some secret way to pray that I don't? It's a slippery slope down this road, but it is hard to avoid in situations like this.

Of course the answer to those question is no. I am every bit the Christian that the Burpo's are, and Jesus loves me as equally as any other parent loves his children. He has no desire to hurt me or seek vengence on me or punish me in that way. He knows the prayers on my heart that haven't even reached my lips yet. He knows the future and the past and has a plan that ensures eternity for me - for us - for all His children. And part of that plan, for whatever reason, included taking Henry to heaven before I was ready to offer him up. I don't understand why, and maybe I never will, but I have faith in Jesus Christ and I have faith in the works of our Heavenly Father, and I hold those faiths close to my heart and they lift me when nothing else will. Afterall, faith isn't faith unless it's all you're holding on to.

Our family situation was unique in that both of our boys could have died without us ever knowing what killed them. My husband and I often speculate that if it had been Jack and not Henry who died, we may have never followed through with an autopsy. Babies die. It's an unfortunate reality, but it happens. Would we have been as alarmed if a baby had died as we were when a preschooler did? Or would it have been explained away as "one of those things" that happens but here is no explanation for. There is a very real possibility that we would have lost both of our boys if any one detail of our story had been different. Had the surgeon at Children's Hospital not persuaded us to have an autopsy done - something we were hesitant to do (he's been through enough, he was cut into enough when he was alive, no more...) we would have never diagnosed the XLA... never gotten Jack tested and diagnosed. Without a diagnosis and his monthly treatments, it was only a matter of time until Jack would have contracted a virus his little body couldn't fight off and in a matter of days he would have been gone, too. In taking Henry, we believe that God spared Jack. Would I love for Him to have spared both boys? Obviously. It goes without saying. But after having lost one child, I can't even imagine the horror of life that would have come had we lost both.

In the weeks before Henry's death, some interesting things happened with him. Nothing on the level of what happened to Colton, but interesting just the same. He started to speak of a man who was in the house at night who wasn't Papa. My husband thought it had been a friend of mine, or perhaps a repairman, but no males had been to the house. Henry was adament that the man had been there in his bedroom several times though. At the time, I chalked it up to an over active childhood imagination. After his death, I started to wonder if Jesus had visited my son. I don't know - I never will - but the thought brings me comfort, and it is not outside the realm of possibility for me. In the month or so before his death, I would open Henry's door most mornings to find a good share of his clothes - two dressers worth - strewn across his bedroom floor. The only explanation he had was that "the man" told him he needed to get ready, because he would be going on a trip. I also vividly remember one day, walking into his bedroom in the morning to wake him - it was quiet, so I assumed he must  have still been sleeping - only to find him sitting in the rocking chair with his children's Bible open on his lap, studying every picture. What three year old does that voluntarily in a room full of his favorite toys? I sat down with him and told him the story of Noah and about Jesus and then we started our day. We always said that our kids assumed the personalities of the people they were named after and waking early to read the Bible only solidified that notion, as my Grandpa Hank (Henry's namesake) did it daily when he was alive.

Again, I'm not making any grand claims here - the book just brought a lot of thoughts, feelings, and memories to the foreground.

In regards to the book itself, what a wonderful depiction of Heaven! I wonder now who Henry met when he first got to heaven (besides Jesus, of course). I remember sitting in the hospital room with him at Childrens Hospital that Monday morning. In my heart, I believed he had died the night before and was no longer in that body. Everything was being kept "alive" artificially, but I knew he wasn't there and wasn't coming back. I still caressed him as if he was there and whispered his stories into his ear (he asked for the same three stories every night for over a year - by then I had them all memorized), kneeling again at his bedside, but I couldn't shake the feeling that he was somehow above us in the room, at peace, and looking down on us with love.

It was something I'd never felt before and never did again until this past May when my grandma was in the ICU after surgery to remove a small tumor on her lung. When it started to become apparent that she may not recover after the surgery, there was one night that I sat with her and distinctly felt the presence of someone else in the room and I couldn't shake the feeling that it was Henry. To make matters even more interesting, the following day my mom told me that grandma asked if my mom could see "that misty cloud" over grandma's bed. Was it Henry? Grandpa? Or a drug induced hallucination? I prefer to believe the former.

I've rambled quite a bit here and not really talked about the book much at all. Remember how I said I am not much of a book reviewer? Yeah. Now you know why. I am plagued by tangents. I get off on a stream of thought and the original topic is lost in the dust. I guess my best advice at this point would be to just read the book. It's an awesome story, and an awesome account of one child's brush with Christ. You will be moved, I guarantee it.

In closing I'll share this picture, a picture of Jesus. After his experience, Colton's parents shared pictures of Jesus with the boy, asking if that particular image was an accurate depiction of what Jesus looked like. They shared hundreds of different prints and paintings with the boy over the span of a few years and each time they did, Colton would tell them what was wrong with the picture. The hair was too long, or the nose wasn't right, or what have you. What it was about that particular painting or sculpture that didn't match the Jesus he saw in heaven. And then one day, his father showed him this painting titled Prince of Peace by Akiane Kramarik:

Colton replied (after a long moment of stunned silence), "that one's right." What makes it even more amazing is that this painting was done by a (then) 8 year old girl who also had visions of Heaven. A girl Colton had never met or even knew existed. You can read more about her story here.

Things that make you go hmmmmm....

God bless,

A Mother's Day Wish From Heaven

A Mother's Day Wish From Heaven
By Jody Seilheimer


Dear Mr. Hallmark,

I am writing to you from heaven, and though it must appear
A rather strange idea, I see everything from here.
I just popped in to visit, your stores to find a card
A card of love for my mother, as this day for her is hard.

There must be some mistake I thought, every card you could imagine
Except I could not find a card, from a child who lives in heaven.
She is still a mother too, no matter where I reside
I had to leave, she understands, but oh the tears she’s cried.

I thought that if I wrote you, that you would come to know
That though I live in heaven now, I still love my mother so.
She talks with me, and dreams with me; we still share laughter too,
Memories our way of speaking now, would you see what you could do?

My mother carries me in her heart, her tears she hides from sight.
She writes poems to honor me, sometimes far into the night
She plants flowers in my garden, there my living memory dwells
She writes to other grieving parents, trying to ease their pain as well.

So you see Mr. Hallmark, though I no longer live on earth
I must find a way, to remind her of her wondrous worth
She needs to be honored, and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark, I know you’ll do your best
I have done all I can do; to you I’ll leave the rest.
Find a way to tell her, how much she means to me
Until I can do it for myself, when she joins me in eternity.

Timmy the Goat

Does the little boy on the cover of this book look familiar to you? Depending on how long you've been reading my blog, you may recognize him as our son Henry. We lost Henry almost 18 months ago to a rare genetic disease that we didn't know existed until after his death. One of the many ways we are working to keep Henry's memory alive is by writing a series of children's books. The series is called "The Adventures of Henry", and this is the first book in the series: Timmy the Goat. The books are fully illustrated, and include teachable topics in the back to help engage your little ones and teach them about the different animals and terms in the book. The story itself is a bedtime story that Henry created with his Papa. They used to tell it every night before bed; it was one of his favorites.

The profits from the sale of this book are being donated to the Crohns and Colitis Foundation of America (CCFA). Each book will benefit a different cause, as we try to help other families out there who are living with rare diseases in their children.

How can you help? Well, there are lots of ways. Here are a few thoughts:

1. Buy a book! The book costs $14.99 + S/H, and is available for sale at the Adventures of Henry website we have created for the series, or at Amazon.com. Don't have any little ones that you need gifts for? Consider buying a copy to donate to a local library or elementary school, OR, if you'd like, you can purchase a copy to be donated to a child who is currently admitted to Children's Hospital of Wisconsin, and we will deliver it with a card noting your donation with or without your name attached - it's up to you if you want to remain anonymous.
   
2. Share this blog post with friends. Feel free to copy and paste all of my text onto your own blog post, or share the link on your Facebook page, or email any friends/family/co-workers who may be interested.
   
3. Join the Adventures of Henry group on Facebook, and suggest that your friends do the same if you are comfortable doing so. Anything, great or small, that helps us get the word out about our series and our story would be awesome. We'd love to see the books all over the country, and would love to make a huge impact at CCFA and other organizations that help children who are suffering from rare diseases.

This is a labor of love, and is benefitting a great cause in memory of one of the sweetest little boys. Henry's famous line was, "be good to the aminals!" He loved his animal friends at the zoo (we visited daily!), and was always looking out for their welfare. We're so proud to be able to honor him in this way, and hopefully help other families before they walk the road of bereavement we're walking now.

Thank you so much for your help, whether it's joining the Adventures of Henry Facebook group, a purchase for yourself or someone else, or a prayer for healing, it all means the world to us.

God bless,

Joy! Joy! Joy?

Jack and I were watching a new show on Netflix on Demand (love that, by the way) today. I don't know the exact name of it, but it's something similar to Baby Einstein except with a Christian theme. This particular one was about the story of Jonah and the Whale (or "Big Fish" if you want to get technical, which they apparently do not). Most of the show is filled with instrumental music of songs that I remember from Sunday School, but at one point children start singing along to one, so I decided to sing along with them.

"I've got that joy, joy, joy, joy, down in my heart! Down in my heart, down in my heart!"

Jack loves when I sing, and tries to mimic me with words a few seconds too late and knee slaps a bit off beat, but he's so stinkin' cute those things don't even matter. He's smiling and laughing and I'm smiling and singing....

"...and I'm so haappy! So very haaaappy!....."

We're really on a roll here!

"....I've got the love of Je *sniff* s *sob* us in *sob*..."

Aaaaaand I can barely choke out that last sentence because I am bursting into tears. Jack looks at me like I have three heads and two of them just managed to spontaneously combust. Not only did I muff the song and further disrupt his knee-slapping, belly laughing fervor, I started *crying*! In a song about JOY!

HELLO, MAMA! We're singing about JOY here!! DuH! I can just read it on his face...

My little man does not realize yet that there are happy tears and sad tears. He doesn't understand the feeling that you are losing every single thing you love in the world, and the only thing you have to hold on to is that love of Jesus this very song sings about that is etched deep in your heart. He doesn't realize how very much that love means to you on your darkest days, nor how you're really not entirely sure you could survive without it. I remember the doctor coming in to tell us they had done all they could do for Henry. When he left, the first thing I said to my husband was "Thank God I was raised in Faith." Because I knew then that I needed the assurance of Jesus and His word to get me through that day, and every other day for the rest of my life.

I am grateful for the diligence of my mom and grandparents who insisted I attend worship every. single. week. (sometimes two or three times a week!) as a child and young adult. We lived in the country, and I can remember massive snow storms that my grandpa would drive through to get me to Sunday School, when even city kids were absent. God bless you, Grandpa. You didn't know it then, but every trip you took added up and you may have single handedly saved my life some thirty years later.

When we would ride in to town, I would sit next to Grandpa and sing to him for the duration of the whole 20 minute trip. I would be willing to bet that I even sang this song a dozen or more times. Who knew how it would define me all these years later? Grandpa always loved listening to me sing - he encouraged it. His favorite song for me to sing was "I'm in the Lord's Army (Yes, Sir!)" I still remember the whole (short) song, and it brings tears to my eyes to even think of it because he loved it that much. As a military man himself, I think he could relate to it. It said what needed to be said, and was short, direct, and to the point, much like himself. His least favorite song for me to sing was The First Noel. Because he said I was always off pitch on it. He was a military man and a painter by trade, but he couldn't sing a note so I blame his ear rather than my voice.

Ha. Kidding, Grandpa. Just kidding.

Anyhow, when you look at me, or read my blog, or hear me talk, and think, I just don't know how she does it... Remember this blog post. Remember Jesus. He is how I do it. He is my strength.

I may never march in the infantry, ride in the cavalry, shoot the artillery. I may never fly o'er the enemy, but I'm in the Lord's army. Yes Sir!...

A Message To Heaven

This past Sunday the family took a drive through the cemetery to visit our little man. Last year the snow in the cemetery was such that if you were creative, you could walk between the drifts and pretty much get from the road to the grave site on grass. This year we weren't quite so lucky. A nice, thick, evenly distributed, blanket of snow is covering the grounds and we weren't dressed for trudging through it. As we rounded the bend before coming up to his area, I noticed something in the snow. About ten feet long, there was a message written from someone to "Bruce", saying several sweet things including, "Thank you for loving me." Once we got to our area, I took my lead from that writer and left a message myself, on behalf of all who were in the van (Jack, Papa, Grandma, Great-Grandma): "We {heart} you, Bug".

I've often thought about you, my blog readers, and thought of things I can post here. Unfortunately my follow through hasn't been so great. We are now 15 months past Henry's death and it still seems like it was yesterday at times. I'm not sure that feeling will ever go away. The pain is still very fresh and very real and very constant. There isn't a day that goes by that I don't feel something - pain, remorse, guilt. I can't pinpoint any one thing that gets to me more than anything else, it just happens at random. I've been struggling with bitterness, and a general lack of empathy. These are both characteristics that are new to me and so different from the person I was before November 2, 2009. I'm not sure what to do with those feelings, so I pray about them. I pray that simple prayer that I have prayed nearly every day for 15 months - first about the saddness and desperation I was feeling. Then about the guilt. Now about the bitterness: Lord, please lift these feelings from my heart and help me find peace. Such a short little prayer, but a powerful one, and thankfully one that is responded to quickly. Those feelings are frequent but brief and I am grateful for that brevity.

I wonder about heaven a lot. What it is like, who we'll see there. I find myself seeking out literature about it - scriptures, stories, "eye-witness" accounts from folks who claim to have been there and returned to earth. All of it fascinates me. I'm a bit of a skeptic with the folks who say they've been there and back, but I don't discount their stories... I just don't pin my dreams on them, if that makes sense. Awhile back I was looking for some words of wisdom to share with a girlfriend who is also going through a grief process of her own after the sudden unexpected death of her mother, and I found this quote by Dwight L. Moody:

"Very often people come to me and say: "Mr. Moody, do you think we shall know each other in Heaven?" There is a verse in Scripture in answer to this, and that is: "We shall be satisfied." (Psalm 17:15). It is all I wanted to know. My brother who went up there the other day I shall see, because I shall be satisfied. We will see all those we loved on Earth up there, and if we loved them here, we will love them ten thousand times more when we meet them there."

I found comfort in this, and have carried it with me ever since that day. As I get older, and continue to grow in my faith (because let's face it, faith, like love, is a verb - an action word - continuously moving and growing, enveloping and developing), I realize more and more that this earth is not the end of my journey just as it was not the end of his. He is in heaven, and he is waiting for all of us who love him, and one day we will all be satisfied just as he is today. He doesn't know the pain of missing his mama, papa, "bee", and grandmas, just the anticipation and excitement as he awaits our arrival. What will be decades of life for us on earth will be only seconds to him in heaven before we are reunited again.

Until that day, I am here, and I am waking up every morning, and living the life God intended for me to live. I am taking care of my family and watching my baby boy (who is much more boy than baby these days) grow at an unprecedented rate of speed. We are nearing the end of our therapy with the wonderful "Birth to 3" therapists who have helped us over the last 16 months, and we couldn't be happier with the progress Jack has made. His vocabulary has exploded, and he is picking up new words and activities every single day. He knows his alphabet forward, backward, and sideways (which makes Aunt Julie the kindergarten teacher very proud because she will tell you that just because you can sing the song doesn't mean you know your alphabet.). He can identify the letters in any order right side up or upside down (which surprised us all!). He is counting from 1 - 13 unassisted, 13-29 with a little help. He loves to sing(!) and his favorite songs are the alphabet song, Old MacDonald, and Jingle Bells.

That last one makes my heart smile, because Jingle Bells was the only song Henry ever attempted (despite Old MacDonald being his all time favorite for me to sing while he chimed in with the animal noises). Henry would run up to a cat toy we have hanging on the door and shake it (there are bells on it) and sing, "Jingle bells, jingle bells, oh we have funnnnnn!!!!!!"

*smile*

Jack is obsessed with dinosaurs and can identify about 50 different types of dinosaur by name (and alternate name where applicable, as is the case with the Gravitholus who is also called Prenocephale, and Stenonychosaurus who is also known as Troodon... things I never thought I'd learn, much less teach my two year old). He loves puzzles and play time, and, and, and..... I could go on forever. He's quite the character, and we love him more than he'll probably ever know. We are so blessed to have him in our lives, and so grateful that in losing Henry we were able to save Jack. It is the bright and shiny silver lining to that very dark cloud.

Looking forward, I have purchased paint for Henry's bedroom to bring it from it's current bright yellow little boy nursery to a much more muted beige guest room. It is the bigger of our two bedrooms for the boys, but I'm not ready to move Jack into it yet. Not ready to open that door every morning expecting a face that is no longer looking back at me to be on the other side. Maybe some day, but not today. I will post pictures once that project is complete. Although I am sad to paint the room and convert it back, I know that keeping it untouched does not bring my boy back. And, truthfully, I regretted that bright yellow color choice from day one, so in that respect the change will be welcomed.

We also have a birthday party to plan in the not-too-distant future as Jack will turn three at the end of March. It looks like a dino party is in order, and we are already scheming to switch out his Raggedy Ann & Andy decor for some dinorific decorations as our gift to him.

I am also very proud of my husband who has been working diligently for months now on getting Henry's bedtime stories illustrated and published. The first book will be available soon in hardcover, and we are so excited about it - there aren't even words to express what this means to us, and especially to Papa whom Henry shared those stories with every night. Not only are we getting the stories out, but we are doing so in a way that will benefit other children with rare diseases. Click over to the Adventures of Henry website if you'd like to learn more or help great causes by ordering a copy or three. *wink*

Thank you, as always, for your continued thoughts and prayers. We are so grateful for the strong network of family and friends (both in person and online) that God has blessed us with.

God bless,

November Mourning

One year ago today, my little boy was laying on the couch nursing a virus. Little did we know that in eight short hours he would, for all intents and purposes, be gone. I took him to the hospital that Sunday night, and I was there when he started to slip out of consciousness. I remember thinking he was just tired, and was having trouble staying awake. I thought the illness may have been making him delusional, so I asked him a few questions....

"Who am I?"

"Mum."

"What is your brothers name?"

"Zack." (he always had troubles with the J part of Jack)

"Ok baby, close your eyes and get some sleep. I love you."

And that was it. He closed his eyes, and although several doctors at two different hospitals tried for hours to bring him back, he never opened those beautiful bright blue eyes again. We finally succumbed to the truth around noon the following day, and unplugged all of the machines that were keeping him alive.

The photo above was taken post mortem by the hospital photographer at Children's Hospital of Wisconsin. He did about five different shots of us holding Henry's hands and feet, kissing his forehead, and of Henry holding a few favorite toys. I had them all framed for my mom, and the frame hangs in Henry's bedroom at her house. A few weeks ago Jack pointed to the photos and said, "Baby Jesus?" I think he thought the photos were of baby Jesus, but maybe his innocent eyes could literally see Jesus in the pictures, holding us close while we tried to pick up the pieces of our life and leave that room, knowing we'd be going home with an empty car seat that would never again be filled with the same bright and beautiful spirited little boy. It has been a year, and I still have a hard time comprehending the weight of it all.

The last year has been a blur. Time moved quickly, and for that I am grateful. There are still days that I have to force myself out of bed in the morning, but I do, because there is still a little bundle of energy here on earth who needs me, and I owe it to him to be the best mama I can be. I am determined to give him a good life, despite the emptiness I feel inside. Of course my heart is full of love for Jack - how could it not be. The problem is that ever since Henry's death, I feel as if my heart is missing. I feel as if there is a hole in side of me that never closes. If you think about the old Wile E. Coyote cartoons, there was an episode where the Road Runner shot a canon at him, and the cannon ball went right through him, leaving a big open circle where his chest used to be. He didn't die, or even fall down. He tilted his head down and peered through the hole, and then just continued on with his business. That's exactly how I feel - literally as though a significant part of me was blown away a year ago and yet I don't die. I just keep walking around. It's really quite surreal.

There have been a lot of changes in the last year. Death is an interesting thing, in that it takes your world and, like a snow globe, turns it upside down and shakes the daylights out of it, so that all of the little bits around you are upturned and float down in a different order. There are hobbies that I used to define myself by that in the last year I have had absolutely no interest in. I figure they settled on the bottom of the snow pile when all of the little snow-like pieces of my life started dropping down around me again. They used to be on top - important - and now they are so far down I don't even realize they are still there. New things have settled on top. Running, patience, cooking & baking, fitness, and healthy living.

I have never been a runner. Not even as a child. When all of my friends were running in the park or in the yard, I was in the sandbox. If people were playing a game that involved running, I politely excused myself. I didn't run. Ever. For reasons that I really can not even explain to this day, I decided to start training for a 5K in May. I ran my first 5K the last weekend of July, and my second in August. I now have my sights set on a 5 mile Turkey Trot on Thanksgiving Day, another 5K through the snow in December, and a duathlon in 2011.

Why? Well, the best I can tell you is because Henry can't. There are so many things in life that he didn't get to experience. How could I in good conscience sit on the couch and let all of them slip by when I'm capable of enjoying them? It just doesn't make sense. How easy it would be for me to curl up into a ball and throw my hands up in surrender to all of this! You would be shocked if you could fully comprehend what a fine line I walk between sanity and surrender. But every day I crawl out of bed and pray to God for the strength I need to get through that day. One day at a time (as a very wise woman once said). When all of my emotions start crashing down around me, I close my eyes and pray to God, asking him to lift this (insert thought/feeling/guilt/etc. here) from my heart and help me to survive. Thankfully, He does. Every. Single. Time.

There are days when I have to say that same prayer a hundred times, and some when it's only needed once or twice, but without fail I can feel God's presence and power in my life, and for that I am grateful. I can actually remember one of my first thoughts when we found out that we could not save Henry. I thought, thank GOD that I was raised in faith because I don't know I how I would live through this without Jesus. I was reminded of that again a few days ago when I was reading a book about a boy who was in a terrible car accident and the mother presumed he was dead. Her first thought as she got in the car and headed for their Children's Hospital was something to the effect of... he is Yours Lord, and if You need him You can take him, but You have to give me the strength to get through it if You do.

Amen, sister.

Since Henry's death, there are some things that I can not do. I can not re-visit that weekend. I can not focus on all of the mistakes that were made by our doctors, nor the things that were overlooked through his short life. I can not look at medical records, or bills from those days, stand in the presence of a med flight team in uniform, or get too close to the local hospital that we lost him at. When I do, I feel as though the sides of that hole I described above lose their strength and my whole body starts to cave in on itself. Ironically, these are all the things (with the exception of getting too close to the hospital) that my husband's healing process has thrived on. I have always said that we walk separate grief paths, but hold hands across the middle on our journey. His process is just that - his process. I can't go there. I can't even come close. He occasionally will try to talk to me about something and all I can bring myself to do is raise my hand as if to say, "stop" and shake my head from side. The other day, I was reading some quotes and poems, looking for something to use in our local paper to for a memorial and I found this on one woman's website. I could have easily written most of this myself, and hope it will help give you a better idea of where I am and where I'm going (I deleted a few sentences that didn't apply to me):

Life is a Simple Walk in the Woods-

I was always told that the 'first year' would be the hardest. I set my sights on surviving through the first anniversary of Ross' death, telling myself that it would all be downhill from there. If I could just keep going long enough to scale that summit!

I was also told that my husband and I would not walk the same path. We started out fine, trudging through the woods, holding hands, telling ourselves that we've been through sixteen years together, we'd be just fine. His path slowly led away from me, but seemed to run parallel for a time - I'd catch a glimpse of him in the woods every once-in-a-while. All of a sudden, his path would cross mine. I'd reach the top of a steep hill and he'd be standing there in my way! More than once, I've had to shove him into the weeds so that I could continue on my journey.

Well, then came that fateful First Anniversary. I scaled that mountain! I sat on the very top of that enormous peak, congratulating myself on a job well-done. My husband was nowhere to be seen, I sat there all alone with my pile of Mickey Mouse clothes, little metal cars, well-meaning friends. I had done it! It was incredibly hard work, insurmountable at times, but here I was - still alive, without my child!

Without my child! I felt my heart grow cold as I surveyed the path ahead - the rest of my life. The terrain was just as treacherous as the past twelve months!

I sat on that peak for quite sometime. I hugged all my son's treasures that I carried with me, his precious memory warmed my cold, cold heart, and I searched for any other movement in the valley below. In the distance, I could see other peaks along my path, some maybe as tall as where I sat. I also began to see tiny clearings where the sun was shining. As my tears slowed, I became aware of other paths winding through the landscape - hundreds of them - each belonging to a different parent. I carefully packed my treasures in my heart, neatly so that none would break, and started running down the hill, headlong into the second year of forever.

Peg Rousar-Thompson
In memory of Ross...

Another thing I want to address here is for all of you who think about Henry and then wonder whether or not you should tell me. Please, please, do. It may bring back memories that come with tears, but don't let that stop you. Don't be afraid that you might hurt me. It sounds bad, but I hurt either way. It warms my heart to know that others are thinking of him or dreaming of him or writing stories about him or lighting candles for him. It may bring tears, but please know that the good far outweighs the bad in those situations and keep sharing.

The question I am asked most often (besides, "how are you doing?" of course) is whether or not we are planning on having more children. I thought I'd mention that here, too, because I'm guessing that those of you who haven't asked wonder from time to time as well. All I can tell you is that we are open to the plans God has for us. I'm not pregnant, but we're not doing anything to prevent it either (is that tmi?). We are also not entirely closed off to the idea of adopting or fostering if a situation presents itself. And, having said all of that, we are also open to the idea of living out the rest of our years as Mum and Pa to no more than the two sweet boys we've already been blessed with. There is a possibility that if we had another boy, he too would have agammaglobulenemia like Jack and Henry (or a girl could be a carrier), but we are prepared for that as well.

A few paragraphs back I noted all of the things I cannot do. I'd like to close with all of the things I CAN do and end on a positive note.

I can remember Henry with love and laughter.
I can keep the promise that I made to him at his funeral, and laugh some every single day.

I can be the best mama my boys could ever ask for.

I can go on living despite the greatest loss a parent could know.

I can use my intimate knowledge of grief to help others deal with their own bereavement process.
I can do anything I set my mind to, because I truly am surrounded by angels every step of the way, one of which has some of the most beautiful bright blue eyes you'll ever see.

Love to all who've supported us this past year. You will never fully comprehend the impact you've had on our lives, and we are eternally grateful that God has blessed us with each and every one of you.

In Him,
Sarah

My I Love You

My I Love You

by Maryann Cusimano Love

I am your parent; you are my child.

I am your quiet place; you are my wild.

I am your calm face; you are my giggle.

I am your wait; you are my wiggle.

I am your carriage ride; you are my king.

I am your push; you are my swing.

I am your audience; you are my clown.

I am your London Bridge; you are my falling down.

I am your carrot sticks; you are my licorice.

I am your dandelion; you are my first wish.

I am your water wings; you are my deep.

I am your open arms; you are my running leap.

I am your way home; you are my new path.

I am your dry towel; you are my wet bath.

I am your dinner; you are my chocolate cake.

I am your bedtime; you are my wide awake.

I am your finish line; you are my race.

I am your praying hands; you are my saying grace.

I am your favorite book; you are my new lines.

I am your night-light; you are my starshine.

I am your lullaby; you are my peekaboo.

I am your good-night kiss; you are my I love you.

Walk For Hope

Here are a few photos of the 2010 (first annual!) Walk For Hope that we participated in this weekend, in memory of Henry. It was a great event organized and sponsored by a family who lost their little girl. Being the first year, there were some organizational glitches, but it just made us want to help more in the future to make this event a great success. Enjoy the pics, and thank you for your continued thoughts and prayers for our family. Blessings,

reflecting

I just thought I'd take a minute to blog over here since it has been awhile. I've posted a few recipes on my craft blog in the past few weeks, so if you haven't been keeping up over there be sure to take a peek! I have oodles of recipes that I've clipped from different magazines and publications and enjoy trying new ones. We've been having a bake sale at church every weekend as part of our city's farmer's market, so that has been keeping me busy in the kitchen... and it's a good thing, because I typically just try one piece and then send the rest off before I'm tempted to eat more!

Life has been crazy busy lately, but if you ask me exactly what it is that's keeping us busy I couldn't pinpoint anything major. Just the day to day stuff, and keeping up with Jack (whom you see giving you his best, most beautiful smile above! This is a typical scene - smiles and as many toys as we can carry at one time. :) ). Our little boy is quite the handful, and so different from his big brother. Always on the go! Of course we all still miss Henry and think of him daily. My desktop image is a favorite photo of him, and I have a snapshot next to the light on my night stand. I say good morning and good night to him every day, and remind him that I love him. He had three favorite bedtime stories, and I tell one or all of them to Jack every night because I think Henry can hear me, too. Sometimes I sit at the cemetary and tell them to his grave - I have them memorized, you know. I know all about what happens if you give a moose a muffin. And I also can tell you exactly how that duck got stuck in the muck down by the "beep bween mawsh" (i.e. deep green marsh), as Henry used to say. Not to mention how to use your nose to find things to smell (your beak or your snuffle can work just as well)! I can't get past the feeling that this - life - is not how it was meant to be, despite my core belief that everything is a part of His master plan. It's quite the paradox of emotions. *sigh*

Darrin and I have worked hard to keep Henry alive in Jack's memory. We show him photos and videos regularly, and Henry is often a part of daily conversation. You like Spiderman? Your brother loved Spiderman! That's something you have in common! Jack will look at the photos on our buffet and point to his brother and say, "N-er!", which is his take on "Henry". :) If you ask Jack what his name is, he will say, "Bee!"... a nick-name Henry gave him when he was born. Then we say, "Or?" and he says, "Zack!" (i.e. Jack). If we ask him where his brother is, he will simply point up to Heaven. It warms and breaks my heart, all at the same time.

We are still in the process of choosing a headstone for Henry. And by "we", I pretty much mean me. I have thought long and hard about this, and Darrin and I have discussed all of the options I like (which thankfully he likes, too), but I still cannot commit to one. I tell myself that it's because I want to make sure it's perfect. I look at it like a tattoo. Once you get it, you have it forever (note: it was about eight years between idea and commitment on my tattoo. I like to think things through.). But I wonder if maybe my delay is because that one final act will make everything official... you know, as if it's not already. We are leaning towards a beautiful memorial marker that is a mirage of photos of our boy, but I occasionally go back to the thought of a simple marker that is unassuming and reserved. Because if my boy were given the chance to grow to manhood, I believe that is how he would have been. He would have been humble and sweet and reserved. I could tell all of that in the short time we had him. Maybe a mother just knows? He was so much like his great-grandfather (his namesake). Such an old soul. And maybe that was a gift from God... allowing us to look into those eyes and see so much more than this three years. I don't know, but I like to think so.

I still don't understand why all of this happened, and I'm doubtful that I ever will. But I continue to push forward - probably with more gusto than ever, because I feel him with me, encouraging me, driving me, forcing me to be the mum that he saw rather than the one I really was. Because our children do not see what we see. They see all the good. They see someone who makes the sun rise and set, and they think she is almost mythical. If I can live up to a fraction of the worth he saw in me, that Jack sees in me, I'll consider myself a success.

Until next time,

Happy Birthday, Sweet Boy

June 23 marked Henry's fourth birthday. Hubby and I went back and forth about what to do to remember the day, and finally decided to spend the day with close friends and family. We had a small birthday party, and asked everyone to bring a gift from the Oshkosh Area Humane Society wishlist. All of the gifts, which included huge bags of puppy chow, cans of cat food, peanut butter, kitty litter, over $50 in gift cards, chewy bones for dogs, toys, etc., were donated in Henry's name.

If you are a regular follower of my blog, you know how much my little boy loved animals. I thought this would be an appropriate way to honor him and also help take care of the little critters he (and I - he totally got that from me!) loved so much. My mother believes that Henry is working with Noah in heaven. I like to think he's the right hand man of St. Francis of Assisi (the patron saint of animals). I don't know why I gravitate to St. Francis. I'm not catholic. I really don't know much about the saints. But for some reason this idea hit me with so much clarity on the day of his funeral that I've never been able to forget it. To this day, statues or pictures of St. Francis bring me a great deal of peace. Either way, we know he was smiling that day, knowing he continues to help the "aminals".

After lunch and laughter and memories, we all headed out to the cematary where we released four orange balloons - his favorite color. Prior to releasing, we each wrote a message to Henry on the balloons and then sent them up to heaven. It was a beautiful day. Similar to the image of Henry working with St. Francis, very early on in this whole process I very clearly saw myself (I don't even remember if it was a dream or a vision or what) entering Heaven. When I did, Henry met me and he was holding on to oodles of orange balloons. He had collected all of the ones we released as they floated up to him...

I don't get these visions often, but when I do I thank God for giving me little pieces of my boy to hold on to. I've dreamt about Henry three times since November 2. In the first dream, we were at a zoo, and he was standing up ahead of me, watching ducks and geese swim in a pond. I called to him, and he turned and the joy on his face when he saw me was truly amazing. He ran into my arms and I scooped him up and held him tight until I woke up. In the second, I don't remember details, only the overwhelming sense that he was with me and he was happy. In the third, about a week ago, I dreamed that the hospital called and told me that it had all been a misunderstanding and that I could come and pick him up and bring him home. It was so real... Once we got him home, we realized that his speech had regressed, but he still knew all of his animal sounds. Go figure. And the duck still said "ba-da-boooo!"* :) That last one still makes me cry, because I'm sure you all know how much I wish it were real. Unfortunately, it's not. But I am confident that he is happy, and safe, and waiting for us with open arms.... and a lot of orange balloons.



* The first cartoon Henry fell in love with was Jakers. In one episode Dannon, the duck, yells, "STAMPEDE!" and for whatever reason, a very young Henry repeated her by yelling, "BA-DA-BOOOOOOOO!" (LOL!). Every time we watched it, Dannon would yell and Henry would echo. From that day (at about 16 mos old) until he was almost 3, when asked what a duck said the answer was always "badaboo!"

One Little Word 2010: Healthy

Hi friends,
It has been awhile since I've blogged. Many of you know why, but in case someone missed the news, our whole world changed on November 2nd when my sweet boy (Henry, 3) passed away unexpectedly of an unknown cause. To make a very long story short, he and his brother had an undiagnosed immune deficiency disorder, and a bacterial infection overtook his body. He was fine on Thursday - happy, bubbly, energetic. He woke up Friday with a tummy ache and a fever, and was diagnosed with a viral infection so no antibiotics were prescribed. By Sunday night, he was basically gone. Much work was done to try to keep him alive, but they finally turned off all of the machines and pronounced him at 12:45pm on Monday. You can read more about it on my family blog (link at top right), or on my facebook page if we are friends there (if not, and you would like to be, just send me a message there).

Now, two months later, we're trying to carry on as best we can. We still have a sweet little boy here and are doing all we can to get his deficiency diagnosed (still going through testing to determine exactly what it is - agammaglobulinemia or hypogammaglobulinemia or something else entirely).

Anyhow, I'm not sure if you remember, but last year I participated in Ali Edwards One Little Word campaign. It's kind of like a New Year's resolution of sorts. The word I chose for 2009 was believe.

Back then, I said this:

I will believe.... in myself, in my talent, in the future, that this too (insert current dilemma here) really shall pass. That everything has a purpose, and that I have the strength and the stamina to get through anything. My first idea for a word was simply "be", but I think I like this better. I will not only be, I will believe.

...and for the most part, even given the devastation that fell on us at the end of the year, I can say I honestly did a good job of maintaining that belief. I do know that everything happens in God's perfect timing, regardless of whether it is what I want or what I will ever have the capability to understand.

Now, looking forward to the year ahead of us, I'm choosing a new word and that word is healthy.




My goal for 2010 is to live healthy in mind, body, and spirit.

Health of mind will allow me to grieve properly without casting blame on myself or dwelling in regret. It will allow me to continue loving and remembering Henry every single day, while still allowing Jack to grow and play and be the boy he loves to be without hanging the shadow of his brother or his illness over his head. It will allow me to grow as an individual, and be open to the opportunities in front of me to use this experience to help others whether through the use of Henry's memorial fund, moral support, or witnessing the grace of God.

Health of spirit will support my desire to continue growing in my faith and walking closer to God. I have never felt closer to Him than I do now, and look foward to that relationship developing and growing over the coming year.

Health of body will give me the motivation to take care of myself, even on those days when getting out of bed seems insurmountable. It will encourage me to live smarter and healthier. To cook more and order out less. To eat my vegetables. To drink my millk. To exercise and continue working towards my weight loss goals.

In 2010, I will be healthy.

What about you? What is your one little word for 2010? I'd love to hear about it.