Henry's Finished ABC Book

I am sharing a link to the finished product of Henry's ABC book. It's really too bad we don't have any fun pictures of Henry... 

Any future children we have will probably just grow up with a camera attached to their body somehow so we have a constant stream of photos and video. And those who thought we posted lots of Henry on Facebook haven't seen anything yet!! Thanks to those who haven't gotten sick of all our pictures...we really do enjoy sharing our boy with the world!

If you're so inclined, you can view the ABC book here. Thanks again to Pinterest for the idea :)

https://share.shutterfly.com/action/welcome?sid=8AbOG7Ns0cs2Er&cid=SM-PBAPP

Birthdays

I've always enjoyed my birthday...parties with family and friends, fun mail, cake and presents. As I've gotten older, though, the magic of birthdays has faded a bit. It doesn't always seem so exciting to turn another year older. The milestones aren't quite what they used to be...getting to drive, or drink, or even rent a car.

This year, though, I appreciate my birthday a little more. Yes, I'm another year older, perhaps a little wiser. But I know so many people who aren't celebrating birthdays this year. There are families holding memorials instead of parties. And so I'm grateful to be celebrating another year, enjoying time with family, and loving the wishes from friends and family near and far. This past year hasn't been quite what I expected (not even close!) and this birthday celebration wasn't what I pictured a year ago. But, this birthday brings the start of another year...and who knows how I'll be celebrating my next one!

Today I'm grateful for another year on earth, for my family and friends, my fur-babies and my angel babies. And I'm grateful for memories...like this picture of Henry from my birthday last year...he wasn't so impressed with the celebration!

ABCs

One of my summer projects is making an ABC book for Henry.  It's not like we don't have enough books and pictures and things to remind us of Henry, but this was an idea I saw when I was on bed rest, and now I want to do it!  Plus it will be a fun book to use with any future siblings, cousins, or other little kiddos (or grown-up kiddos!) that we want to know Henry.

As I've been working on this book, I've realized that Henry did a lot in his short life.  Many of the letters of the alphabet have more than one word or phrase associated (like books, baseball AND baths.)  Yes, many of the things in the book are everyday...baths, drool, family...  But some are more special...Florida, Vala's, orchard...  And there were a couple of tricky letters.  I mean, really, what in Henry's life started with X??  (In case you're wondering, that letter gets tuXedo.  I cheated a little...)

Once again, it reminds me of how precious time is.  Time is one commodity that cannot be duplicated or repeated.  Once a moment is gone, it's gone.  Therefore, it is important to me to make the most of every moment.  Does that mean that I'm happy every second of every day?  No.  Does it mean that there aren't going to be any more days that I would prefer just to stay in bed all day?  Unfortunately not.  What it does mean is that I will even appreciate the down-in-the-dumps moments.  Those are the moments that make me appreciate the happy ones even more.  They are the moments sometimes when I feel most connected to the boys and other loved ones we've lost.  The other day I felt sad, so I sat in the nursery watching Henry videos, smiling through some tears.  It also means that I am working on being grateful for what I do have.  Some days that still doesn't seem like enough, but if I keep at it then one day I will find that I am content with where I am in my life.  This new appreciation for life, and for time, has given me a new outlook on life...and that is one more thing for which I am grateful.

Top Ten Things Henry Taught Me...#1

10. Anything worth having is worth working for.
9.  Enjoy the little things.
8.  Every child I interact with is someone's "Henry."
7.  To be a mother is to watch your heart walk around outside your body.
6.  There truly are angels on earth.
5.  Everyone is fighting some sort of battle we know nothing about.
4.  Time is a gift.
3.  Death is not the end of a relationship.
2.  You never know how strong you are until being strong is the only choice you have.
1.  Motherhood is the best job I could ever hope for.

I've had a lot of jobs in my life...baby-sitter, the Firth Co-Op, a grocery store clerk, child care, Hallmark, adolescent treatment facility staff member, classroom teacher, Starbucks barista, librarian...some I've enjoyed more than others; some paid better than others; some hours were better than others.  I learned something from all of these jobs, yet none of them prepared me for the best job I've ever had.

This best job is a grueling one.  It requires being on call and available 24 hours per day.  There are no holidays, sick days or days off from this job.  It requires regular contact with a variety of bodily fluids.  It is one in which your needs come second to the needs of the job...always.  Cooking, cleaning and teaching are all part of this job.  As far as money goes, this job doesn't pay well (or at all), but the benefits are astronomical.  Benefits include smiles and giggles, immense pride in new accomplishments, and getting to be a kid again.  The most important benefit is unconditional love. 

Despite our losses and sadness, being a mother is still the best job I have ever had.  Nothing can compare to newborn baby snuggles, even if it is at 3 a.m. and it's the third time that night.  Seeing your baby smile (really smile) for the first time is amazing, as are all the firsts.  Watching this part of you grow and develop into his or her own person is almost indescribable.  I never knew how much I wanted this job until I had it, and once I got this job I knew nothing else would compare.  Even now, as a mother to two angels, I am grateful for this job.  I am grateful to have carried my two sons, and to have been able to snuggle them both.  I didn't get to snuggle them nearly as long as I wanted to, but I think that's true for all mothers.  Our children, as children tend to do, grow too fast...and before long they are no longer our babies but rather they're our kids, or even our grown adults raising babies of their own.  I cherish the memories of my boys, and I thank them for giving me this wonderful job...the job of motherhood.

A peek inside the blood drive

Here is a slideshow of pictures from our blood drive on Saturday. It was a fun day, and we are so thankful for everyone that made it a success...the American Red Cross and their fabulous staff, all of our donors, everyone who helped spread the word, our friends who brought goodies to feed our donors and staff, and everyone who sent positive energy our way! We do plan to make this an annual event, so watch for it again sometime next April!

http://youtu.be/7gw28ZAj-JY

Happy Father's Day!

Today I want to wish Tim a happy Father's Day.  As a father, and a born "fixer," it is so hard for Tim that he couldn't "fix" his boys, and that he can't "fix" things for me.  Yet, instead of giving up, retreating, not caring, he gives back.  Tim wants to make this world that his boys left a better one.  He wants to make life better for others in any way he can.  His loving and giving spirit and his strength are the epitome of fatherhood.  Whether he holds his children in his arms or his heart, Tim is a dedicated father and husband, and I am ever so grateful he is mine. 

To all those angel daddies...I hope today you can find some peace and feel the presence of your babies (and that includes babies who are grown!) that have gone too soon.  You may feel like less of a father, but in truth you are a stronger father as you father your angel babies.  You are not forgotten, nor are your precious angels.

To honor Tim and all the angel daddies, here is my absolute favorite picture of him and Henry.  It was taken last 4th of July, when Henry was about 3 1/2 months old.  The love and adoration these two have for each other radiates from their faces.  Tim, Henry, Brady...I love you!

Pride

I am not typically one to boast about my accomplishments, and I even have a hard time accepting compliments (although I am trying to be better about that.)  I'm not one for the limelight.  I wanted a courthouse wedding...that way I was much less the center of attention than in a lavish ceremony.  (I did win that battle, by the way!)  I write and blog and am much more comfortable sharing my feelings that way.

However, I did want to share my pride in our accomplishment with Henry's memorial blood drive.  This was Tim's idea, and he was the one organizing the drive with the Red Cross.  I contributed ideas, and shared it on Facebook, but it was definitely his baby.  In fact, I was dreading the blood drive a bit...another event where we are a bit in the spotlight...where I have to be social and interact (appropriately) with people...and I had to be up bright and early while skipping my morning coffee so as not to interfere with my own blood donation!  But now as I sit back, I find that I truly enjoyed the day.  I enjoyed, once again, seeing so many people come out in support of Henry's mission, and our mission...to give back and to make this world just a little bit better.

Tim and I are so proud of both of our boys.  Although they are not here on earth, they are most certainly making a difference.  Personally, I had never considered donating blood.  I know people need blood, and I know it can save lives, but I always thought someone else can make that difference...they don't really need me.  Yet seeing all the blood products Henry went through during his short hospital stay changed my mind, and it made me that much more passionate about this event.  If my blood could save even one life, or give a person just one more day, why wouldn't I want to give?  And probably a quarter of our donors today were first time donors...that's Henry's influence.

And, here comes a bit of the boasting part, I am proud of Tim and I.  It would be so easy for us to say forget it...we've been through too much...we have nothing left to give.  Instead, we go out there and make what difference we can.  No, we're not raising thousands or millions of dollars for cancer research.  We aren't pioneering new treatments.  But we could be saving a life.  And to that one person who's life might be saved, that's a pretty big difference.  As much as some days I just want to dig a big deep hole and disappear, I know that I want more to carry my boys' legacy of strength and caring.

Thank you to all of you who are a part of A Monster's Mission.  Thank you for reading our story, for following our blog, for attending our events, for thinking of us and praying for us.  Thank you for helping us to carry out Henry's mission of love, hope, and strength. 

Baby Magic

Babies truly do have some sort of magic about them! Their innocence and sweet faces can lift spirits, and bring joy and even peace. And really, what can beat the feeling of a sleeping babe in your arms?

Perhaps it's the promise these sweet babies hold...or their complete dependence on us to meet their every need...or maybe it's that intoxicating baby smell...whatever it is, it's amazing.

Today I got to meet twin babies Adah and Paxton, and big sister Quinn. While Mama was getting a new computer set up, I gladly held three-month-old Paxton. He gazed around the room with wide eyes. Then his eyes got heavy, and he finally snoozed in my arms. It felt so natural holding him, lulling him to sleep. I felt so at peace, so joyful. It's that baby magic, I'm sure!

That sense of peace that came over me was so refreshing. It was almost as if the universe was telling me that it's okay to enjoy these babies...and that someday I will once again have babies of my own to hold and care for. Whenever that day comes, I will appreciate every moment. In the meantime, I will enjoy and appreciate all of these beautiful new babies that my friends are bringing into the world (consider this your warning!) 😁

Going Home

Ever since my sister moved to California, it's been great to visit her but hard to leave. I think we make the most of the time we have together (even if other people think we're boring!) but it's hard to be so far away sometimes. And Southern California certainly isn't a hard place to spend some time. Nebraska doesn't quite have the same ocean views... 

Vacations and visits are a good way to clear your head. You can, for the most part, leave your worries behind and live in the moment. There are few responsibilities other than having a good time. That also makes returning to reality hard!

Although I am dreading the return to reality, it is easier now than it has been in the past. I still hate saying goodbye to Jamie and Trent. But instead of flying back to Nebraska and my single life, I now have my husband and fur babies waiting for me. I have a house that feels like home to get back to. I have my physical memories of my baby boys, although I carry them in my heart wherever I go. And one day there will be little non-fur feet running to greet me at the door. I am thankful to have such a wonderful place to visit and wonderful people to spend time with, and I am grateful that I have such a love-filled home to return to. 

Other people's kids

I've been in California visiting my sister and brother-in-law the past few days. On Friday, Jamie and I baby-sat Isabella for a couple hours. We read books, played hide-and-seek (a LOT of hide and seek), watched Mickey, went for a walk, played the piano...Jamie and I needed a nap when we were done! We visited Isabella and her friend Izzy again yesterday, building towers, getting check ups, and doing puzzles. Then today we had brunch with some other friends and their son Nicholas. After brunch we went to the park where Nicholas could run around and play.

When I got here, Jamie asked if it would bother me to spend time with these three-year-olds. I told her I didn't exactly know what to DO with three-year-olds, but that it wouldn't bother me. (I know the infant stage, and the elementary school age, but I haven't had as much experience with the toddler stage!) I miss Henry, but that doesn't make me not want to be around other kids. It was fun to see these kiddos having fun, smiling and laughing (and even throwing a tantrum!) Kids keep us young, and their smiles make me smile.

Thanks to Heike, and Jennifer and Ricky for sharing your kiddos with me. It gives me a good excuse to act like a kid again, and keeps me in practice for days down the road when I need to know what to do with a three-year-old!

Flashback Friday

Here I am in California, leaving Tim and the three crazy dogs to fend for themselves. Charlie had to go to the vet yesterday for a couple shots, and it turned into quite the traumatic ordeal for the little guy. He already has his issues with anxiety...now he won't sleep and he won't go anywhere without Tim. He just shakes and wants to be close to someone. It makes me so sad that I'm not there to snuggle him!

Thinking of Tim having to deal with a traumatized Charlie on his own brought back a Henry memory. It was open house night, when I had to be at school for an hour or two in the evening. Henry would've been around 4 months old at that point. It was one of the first times I'd left him. I knew he and Tim would be fine, but I kept my phone on me just in case (as any paranoid new mother would.) About halfway through open house I got a message from Tim, asking where the formula scoop was. I replied that it was in the formula (duh, right?) Unfortunately, I was wrong (it happens rarely, but it does happen!) I had combined cans of formula earlier that day and somehow had thrown out both scoops. So poor Tim was scouring the kitchen for a scoop with a screaming Henry. (Henry was very laid back and mild mannered, but if you let him get hungry he would let you know he didn't appreciate it!) I frantically looked up the measurement of a formula scoop while Tim tried to calm Henry and make a bottle all at the same time. Luckily we remembered there was some breast milk in the fridge, so the crisis was averted. And I made a pit stop at the store on the way home to get a new can of formula complete with scoop.

Henry is much like his mama in that way...quite unhappy when he gets hungry! It's times like those (and now with Charlie) that I'm thankful to have such a wonderful partner in this crazy thing called life. I feel awful that I'm not there to help, but at the same time I know Tim has it handled. I am a lucky lady...having a husband who sends me off to enjoy a little vacation (knowing it will be good for me) while he holds down the fort... Thanks Tim. I love you!

Another Dream

I had another dream last night. This time Henry himself wasn't in it, but it was about him. In this dream, it was the beginning of next school year. One of the new teachers saw pictures of Henry on my desk. She knew he had died, and she asked me how he died. Tears immediately came to my eyes as I told her he died from complications of leukemia. Then she asked me to tell her a little about him. The tears flowed, but they didn't scare her away, and it was nice to talk about Henry.

So often people are afraid to bring up Brady or Henry. They don't want us to cry, or to feel sad. But the thing is, we cry and feel sad anyway. Yet like any parents, we want to talk about our kids. We want to remember our kids. This is something I need to work on as well. I often shy away from talking about my kids...I don't want to make people feel bad, or to have that awkward silence. I need to be brave, to share my beautiful boys with the world! (It's so easy to do here in writing and so much harder to do in person...) And to those of you I may see one day (or every day)...don't ever feel bad mentioning our boys. It warms our hearts to know that we aren't the only ones who remember them, and that ours aren't the only lives they have touched.

Top Ten Things Henry Taught Me...#2

10. Anything worth having is worth working for.
9.  Enjoy the little things.
8.  Every child I interact with is someone's "Henry."
7.  To be a mother is to watch your heart walk around outside your body.
6.  There truly are angels on earth.
5.  Everyone is fighting some sort of battle we know nothing about.
4.  Time is a gift.
3.  Death is not the end of a relationship.
2.  You never know how strong you are until being strong is the only choice you have.
It's been awhile since I have blogged about the lessons Henry taught me.  Over the last few days, and even since Henry got sick, we have had so many people tell us that our strength inspires them.  People tell us they don't know how we get out of bed each day...how we haven't turned to drugs or alcohol to cope...how we continue to live our lives.  For us, it's simple.  Henry showed an amount of strength not seen in most adults.  Therefore, we are carrying on his legacy...and his strength.

When people ask how we do it, the answer is really pretty simple...what choice do we have?  Sure, we could stay in bed every day...drink our breakfast lunch and dinner and pass out early and hard.  We could shut ourselves away from everything and everyone.  But if we do that, what kind of life do we have?

I didn't ever want to be this strong.  I didn't want to be someone that people looked up to.  I just wanted to live my life.  But then again, that is what I am doing.  I am living my life.  I am getting out of bed.  I am doing things.  I am interacting with people.  Does it take more energy than sometimes I feel I have?  Absolutely.  Are some days much harder than others, for no apparent reason?  Very much so.  Could I dwell on what I don't have and forget what I do have?  Sure.  But I have chosen to carry on.  I have chosen to be grateful that I have a loving and supportive husband...that I have friends and family that don't give up on me, no matter how many times I say no to doing things...that I have a job that I enjoy and coworkers that are willing to let me be me (whatever that may be on a given day)...for the community near and far that has rallied around us and continue to help us to carry out Henry's legacy of strength, love and caring.

It may be true that you never know how strong you are until being strong is the only choice you have.  I hope that very few people have to know a strength like we do.  And I do hope that our strength can inspire others.  To those that are fighting battles that seem insurmountable...keep fighting.  To those who have friends or family that are struggling, be a source of strength for them.  We never know what battles someone is fighting, or what something as simple as a smile can do to brighten someone's day.  Look for the silver lining, even if it seems invisible.  If Henry could smile even as a deadly cancer was attacking his body, I can get out of bed each day.  I will carry his strength with me until the day I get to hold him again.

 
1.  Motherhood is the best job I could ever hope for.

Keeping Busy

I have, for the most part, been keeping pretty busy this summer so far.  In fact, each day I create a to-do list for myself.  Granted, some of the things on this to-do list are to watch episodes of TV shows on Netflix, or read; but it also includes things like cleaning, laundry, projects, and other such things.  This is how I've been coping with having time on my hands.  Someone asked me recently if it was helpful, making myself this list each day.  The answer is that it is and it isn't helpful.

Giving myself a list gives me some purpose for getting out of bed each day.  I feel accomplished when I can check things off the list.  And it is nice to get things done that have been on my to-do list for months (or more...)  Yet the to-do list also makes me feel a bit trapped.  Even when I do sit down to watch TV, I feel like I should be doing something else.  I wake up feeling like I need to tackle everything all at once, or I won't get anything done.  I never feel truly relaxed.

I can't even remember what summers used to be like...back before I was married, before I had babies (and fur babies.)  I remember watching a lot of TV, although back then binge-watching required waiting for the next DVD to come in the mail.  I remember putting a lot of miles on my bike, reading many many books, and just enjoying the time and freedom that comes with summer.  I don't remember making such extensive lists...giving myself so many tasks to complete.  I miss those carefree days, when my biggest decision was whether to get on my bike or flip on the TV. 

I have lost that sense of innocence...of freedom...of not having cares.  However, I have gained much wisdom, a sense of what true unconditional love is, and what is truly important in life.  As summer goes on, I may find myself relaxing, enjoying the freedom.  And if not, at least my house will be clean, decorated, and my projects will all be checked off!

Cure Search Walk

A Monster's Mission participated in our first Cure Search walk today. Cure Search is dedicated to researching treatments for children's cancer. In the ten years this walk has been in Omaha, it's locally raised $1.5 million. 

Our team this year was small but mighty. We had 20 on our team, and we came in 13th out of 60 teams in dollars raised...not too shabby for our first go! We are so grateful to those that came to walk with us. We hope to build on that and continue to try and make a difference.

It was an emotional morning for me. There was a balloon release and moment of silence for the little fighters we've lost, and a celebration of those who have survived or continue to fight. It's just another reminder of how many lives are touched when a child is diagnosed with cancer. I never will understand why these kids have to fight such an awful disease. I thought of Henry and all he fought, and how hard he fought. I see so many parents and family members and friends that support these kids, and think of how their lives turned upside down due to the word cancer. Those kids, those families...that is the reason we continue to fight. That's why we did this walk, why we have a blood drive later this month...to raise awareness and funds to help fight this awful disease called cancer.

These kids that have fought, these families that fight beside them, to me they are true heroes. In the words of Christopher Reeve (as seen on one of the team's shirts), "I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."

Space

We started setting up and organizing the nursery today.  Not because we're pregnant (I'm certainly not trying to start any rumors!!), but just because we both felt it was time.  We don't need the room right now, but walking past the closed door, or walking in and seeing boxes everywhere just adds a feeling of disarray and chaos to the house.  Also, I wanted to get the room set up to a point when I could go sit in there for quiet moments, or when I want to feel close to Henry.  It wasn't Henry's room, but so many of his things hold memories that I almost feel him in there.

Just like packing up the nursery, unpacking is hard.  It brings a heaviness to my heart, seeing all of Henry's things...the towels we wrapped him up in after a bath, his favorite ball and rattle, the books I loved to read to him, the toys that went on his carseat and made noises as he moved around...  As we went along, though, it got a little easier, and the memories were a bit more comforting.  Someday we'll have another little being in that room, and we can tell him or her all about their big brothers.

As we unpacked, it brought to my mind the idea of space.  When we moved into this house, it seemed that we would never fill all the nooks and crannies.  We went from a house with virtually no closet or storage space to a house filled with storage areas.  As we unpacked our things, so many spaces were left empty.  Once we got into the nursery, those spaces quickly started filling up.  It always amazes me how something so tiny takes up so much space.  Yet despite filling up the physical space, the space in our hearts is still empty.  There will always be an emptiness, whether we have one more child or twenty more.  One day our house will be filled with the laughter of children (God willing), but Henry will always have his place in our hearts and our home.  No matter how full our house gets we'll always carry that bit of empty space with us, and that will always remind us that Henry is here.

(And here is Murphy, testing out Henry's recliner...he always wants to help!)

What If...?

What if may be one of the most dangerous questions of the grief journey.  What if we had taken Henry in sooner?  What if we had insisted on more tests?  What if when I thought I was having indigestion (but was actually having contractions) with Brady I had gone in sooner?  Asking these questions is dangerous...it serves no purpose and simply makes one question the unanswerable.  Therefore, I typically try to steer clear of what if's.

This morning, I was doing my normal morning Internet browse, and I came across an article titled "Breast-feeding may prevent 19% of childhood leukemia cases, study says."  The word leukemia caught my eye, and I read the article.  Of course, the study, at best, suggests an association between breast-feeding and lower cancer risk.  It was not an experimental study, but rather interviews with mothers of children with leukemia and mothers of children without leukemia.  And in reading a related article, the link between breast-feeding and AML (the leukemia Henry had) was even more tenuous.

As a relatively well-educated woman, I know that breast-feeding has many advantages for both mom and baby.  When Henry was born, we both struggled with nursing.  In addition, he was incredibly jaundiced, having gotten himself stuck on my bones on his way out and requiring forceps for delivery.  When he was a few days old, we went to the doctor to get his jaundiced checked.  Normally, it's not a problem when it takes mom and baby a few days to figure out the nursing thing.  Newborns don't need much in the way of nutrition, and the little they might get from nursing is usually sufficient.  Henry, however, needed more...he needed more fluid so that he could flush the jaundice from his system.  Therefore, I switched to pumping and supplementing with formula.  It wasn't what I had originally planned, but it was the way I felt I could get Henry what he needed.  He still got breast milk, and got some of the advantages from that, but he also got formula so that he was getting enough food every day.  I pumped until Henry was about 5 months old, and during that five months he got about half breast milk and half formula.  Again, not my original plan but what I felt was best for both Henry and myself.

I know in my head that by not exclusively breast-feeding for six months I did not give my baby leukemia.  Just like I know that had we taken him in sooner, they would have given him oxygen and sent us back home.  But as moms and dads, we always second guess, and although I know in my head I did what was right I felt a bit of a stab in the heart reading the title of that article.  Yet if I've learned one thing (and heaven knows, I've learned much more than that), it's that as parents we adapt and adjust to meet our child(ren)'s needs, and we do what we feel is best for them.  And that's really all anyone can ask.  

A Visit from Henry

I had a visit from Henry in my dreams last night.  This is one of the first times I've vividly remembered a dream about him since he's been gone.  In this dream, I heard him rustling around in his crib.  We were in our new house, so I walked across the hall and Tim was already in the nursery.  Henry wasn't awake, just stirring in his sleep.  Tim and I were arguing over who would get to pick him up once he awoke (which is something we may have been known to do when Henry was still with us...)  And I remember telling Henry how much I've missed him, over and over again.

Other dreams I've had that have involved babies have left me feeling unsettled.  But this one was quite the opposite.  In my dream, Henry was peaceful, content, and happy.  Perhaps this dream was his way of letting me know that he's okay...that he's doing just fine.  It was his way of saying hi, and letting me know that he hasn't forgotten us.  I awoke feeling at peace, knowing that my baby is okay.  Who knows when Henry will visit again, but it's nice to know that he's still there, always with me.