Friday, November 14, 2014

How we celebrate

It may seem odd to those looking in, but we still celebrate Ethne's birthday every year.  It is a day for us to remember her and celebrate all the things we have learned from her short life and since.

I've mentioned that we use it as a day to celebrate our eternal family by attending the temple.  Many are aware of the service challenge we issued this year.  But we also do things Ethne enjoyed, we have cake, balloons, and sing "Happy Birthday."  This year Mr. E and I watched "Tangled," he picked it, he likes the "I Have a Dream" song, and it hit me particularly hard (more on that another time).  Then we all had chocolate toast for lunch.  I try to do something special that she would have liked with her cake, just as I do for my boys.  Last year it was a minion, this year I tried to make a butterfly out of cupcakes.  I also make sure to get a flavor that she would have enjoyed, this year it was red velvet and strawberry cheesecake (they screamed at me from the shelf that they were what Ethne would want).  There is a park next to the Herriman cemetery where Ethne rests, we meet there with any family that can and have cake.    Then we head over to the cemetery, leave balloons and often a small gift at her headstone, blow kisses, and send balloons to her in Heaven.  We also try to have a dinner that Ethne might have requested, after Lawrence and I got home from the temple and the boys were in bed we had one of Ethne's favorites, "cocorn" (popcorn).

Another way we remember is by looking through some of Ethne's special things that we keep in her chest.  Yesterday got a bit busy with service and celebrating so we didn't get to spend the time that we like to spend.  But while we ate our popcorn and Lawrence and I snuggled we did so under Ethne's quilt that Grandma Stone made for her, and hugged her "ephant."  We talked about Ethne and remembered her together.

It really was a wonderful day and I am thankful it was so full of so much goodness.  I know it's a few days late, but happy birthday, Princess!

Thursday, November 13, 2014

Their acts of love

While we were busy showing love to others by serving and giving others were busy serving and giving to us.  We were recipients of 5 acts of service from others yesterday.

1.  When I started backing out of my garage to deliver freezer meals in the morning I looked in my mirror to find a car in my driveway.  It was a dark grey color so my first thought was that it was our second car, but I quickly realized that Lawrence was at work and therefore it could not be our car.  I put my SUV in park and got out to find a couple neighbors with a small veggie tray for me.  They also delivered yummy veggies to some others they thought would use a pick-me-up.  We hugged, chatted, and went on our own ways.  The veggies were super yummy and really hit the spot both yesterday as a snack and today with lunch.  Thank you!!

2.  When I got home from the freezer meal delivery I found lovely flowers on my doorstep from my visiting teachers.  They brightened my day and now brighten my kitchen.  Thank you, ladies, for thinking of me and my family!

3.  UPS pulled up in front of our house and delivered a book about life after losing a loved one.  My maternal grandmother sent it to me, I knew it was coming, but not when.  I found it appropriate that it was delivered on Ethne's birthday.  Thank you Grandma!

4.  While I was busy frosting Ethne's cupcakes I heard some voices outside my front door.  I chose to ignore them until my over-protective dog (not that she's threatening at all) herd them and started barking rather hysterically.  I tried to shush her, to no avail.  I peeked throughout the window at the top of my front door to spot hands busily taping hearts to our storm door.  I chose to leave them to their work and I returned to my cupcakes.  I don't know who "heart attacked" us, but I just love it and plan to leave the hearts on the door for the time being.  Every time I see them it makes me smile.  Thank you, whoever you are!

5.  We were a little lackadaisical about finding a babysitter for our temple visit.  I tried a cousin, but she had to work, I asked about young women in our ward, but it was mutual night with a meeting about trek, my parents were coming to the temple with us, J&J had to work-- nothing was working out.  So I started calling friends and neighbors.  Our lovely backyard neighbors were graciously willing to watch our boys for us.  They are awesome neighbors and great friends.  They watched our boys, weren't upset that we wound up in a later session than we intended to go to, and even took in our crazy dog that escaped our yard (our fence is rather ineffective at the moment) to check on the boys (like I said, over-protective).  Thank you so much, it really meant a lot that you disrupted your evening so we could go to the temple!
our not so threatening dog

Thank you everyone for your service and especially to those who served us, it really meant a lot that you were thinking of us and helping make Ethne's birthday special and that much sweeter for us.

Wednesday, November 12, 2014

Our acts of love

We issued the challenge, so it is only fair that we follow through and participate in it too.  We performed 5 acts of love to celebrate for our princess.  It made the day one of goodness and sharing rather than of sadness and mourning.  These acts of service and love helped us feel Ethne close to us and made a hard day much easier.  So here's what we did:  Considering that Ethne's birthday falls on Veterans' day (a U.S. holiday to celebrate and thank all those who serve and have served in the armed forces) we thought it would be appropriate to do something for the troops.  I heard about an organization that sends care packages to those serving abroad and thought that would be a great way to go.  This organization collects leftover Halloween candy and puts it into care packages for the service men and women.  They also request hygiene items such as toothbrushes, toothpaste, floss, mouthwash, etc. along with the packages of candy.  So we gathered up our leftover candy, the majority of Mr. E's stash, and the traded candy from my younger brothers (they got legos instead) to make a total of 12.5 pounds of candy!  Then I added some dental floss and some mouthwash strips (those Listerine things that clear your sinuses for a week), packaged it all up and sent it off on Monday.  Added bonus-- we don't have all that candy sitting around to hinder our efforts to eat healthier.

2.  If you read this blog regularly then you know about little Ethan who recently passed away after a very long battle with Leukemia.  What you may not know is that his sweet mom is pregnant with baby #7 and is due at the end of the month.  I remember what it was like after Ethne passed (granted our situations are different).  There were days, especially after the help quit coming, that I just didn't want to get out of bed, much less think about making dinner.  I knew that my family needed to eat, but when you are grieving it is sometimes difficult to even think about the necessities.  Those were the days that I was most grateful for my sweet aunts, grandmother, and mother who had gotten together shortly after the accident and made me a whole bunch of freezer meals-- I had so many that there wasn't room in my freezer for them all and I had to store some at my parents' house.  I also very recently had a baby and remember well the exhaustion and busyness of a new baby.  Pair the two together and I'm not sure what I would have done.  With all this in mind I got to work and put together a handful of freezer meals for Ethan's family.  It really didn't take me long to get them all together, but I'm sure it will save Ethan's mom lots of time in the future when she is too tired to even think.  I dropped those off to her yesterday morning.  We were able to have a nice, short talk and give each other a hug that said more than any dinners ever could.  I am so grateful to know Ethan and his family and so thankful that I had the opportunity to help them in this small way.

3.  This is something I do kind of regularly, but it has been a few months since the last time I have done it and we thought it very appropriate to take bracelet sets up to Primary Children's on Ethne's birthday.

4.  This is another something that Lawrence and I do regularly, and have done every year on Ethne's birthday since she passed away, but still, it is service, and some of the best service we can give.  Shortly after Ethne's passing we determined to make her birthday a day to celebrate out eternal family rather than a day to be sad.  Yes we miss Ethne terribly, and days like her birthday can be more difficult than other days, but we try.  We gather as much of our family as we can and go participate in an endowment session at the temple.  We also encourage our family that is far away to participate in their nearest temple.  The temple is one of the places we can feel Ethne's spirit best, so we especially feel it is an appropriate place to go on her birthday.  We also know that we are helping others who have passed before us and that we are helping Ethne as she is teaching and serving others on the other side of the veil (to learn more about LDS temples just click).  This year we were able to attend with my (Melissa's) parents and paternal grandmother.  We were sad that more weren't able to attend with us, but understood that work schedules can be hard to get around.  The session was made sweeter when my sister, Jessica's, brother and his wife were also in attendance and Lawrence's dad's cousin and her husband were also there.  It was really neat to see extra friends and family there, even if they didn't really know the significance of the day for us.

5.  Last, but certainly not least, we purchased gifts that we would have given Ethne and donated them
to the Road Home in Salt Lake.  I probably should have planned a little better as this didn't go over quite the way I had hoped for it to, but it was good nonetheless.  We purchased an outfit, a couple toys, and also took a bracelet set.  We hope that the girl(s) who receive these items can feel as loved and as special as Ethne is to us.

We took our boys along with us on all of these projects, except for the temple, and I hope that they can see us serving others and learn to serve as well.  We did make sure that Mr. E knew we were going to the temple and why we were going, he really wanted to go with us so we promised him that he could go when he is older and that we would take him to walk around the temple soon.

One last note:  I cannot take full credit for this challenge.  Several months ago my mom saw someone ask for acts of service for their birthday.  She called me and suggested that we try the same kind of thing for Ethne's birthday.  I'll admit that I had been thinking about our family doing service on her birthday this year, but I hadn't thought about inviting others to join us.  So I just have to say thank you to my mom for the suggestion, it really turned out well!

P.S. This is an official heads up, start planning 6 acts of service for next year.

Tuesday, November 11, 2014

Birthday Wishes

Here are some of the acts of service some of our friends and family have participated in to honor Ethne:

We are doing operation Christmas child through Samaritan's Purse for 1 boy and 1 girl ages 5-9. In honor of Ethne. Love you guys!♡

I didn't do anything very special, but I did rescue a dog who was wandering around the streets, bring it home and then find his owners and return him. I also babysat for a couple who are pregnant- I didn't accept payment. They needed a date before the new baby came. I unplugged a single mom's sink, and I sent out a card to my aunt for thanksgiving. My last act of service, today, is smiling. I'm going to smile at everyone I see today. :)

Hello :)
We all really thought a lot about what we wanted to do for service.  We all came up with something that we felt made us think of Ethne and something that would carry her sweet spirit beyond just today.
We decided to make bracelets that will be donated to Shade Tree (battered women and children's shelter) and Child Haven.  When children are removed from their homes (for various reasons) these bracelets are given to them by police officers, fire fighters, and Child Protective Services.  The bracelets are something they can call their own and something that brightens their day.  We will also be donating some to the troops to pass out to children who are victims of bombings in war torn countries.  Our goal was for each of us to make 5 tonight for Family Home Evening.  It was such a great night with an amazing spirit!! The kids loved it and I had to force them to stop and go to bed.  We have 30 bracelets and the kids think they can easily double that number tomorrow.  Thanks for giving us the inspiration we needed to get the service ball rolling!!  I know the bracelets will be loved!!

I have a lady in my neighborhood that needs childcare, but can't pay for it. I am a licensed in-home daycare provider. I am providing her with free child care for 3 months in honor of your Ethne

We think of Ethne many times and in many different ways but it has been special to think of her as I have helped the missionaries with special tasks and concerns the last few days and today.  I won't list them but now I will always think of Ethne in connection with service, helping others.  Ethne will always have a special place in our family and we look forward to being with her again.  I like to think that she is able to be with us at special times.  

And a few blogs:

More tomorrow.

Monday, November 10, 2014

Bottle Them Up

The BFG gathers dreams
Today was a wonderful day.  I got a lot done that I needed to get done.  It may not look like it from the outside, but I promise I did.  This morning started a little crazy with my brother coming over and a meeting for a small job (THANK YOU to the wonderful neighbor who took on three crazy boys for me!!).  Then it was a nap for Baby J and I had plans to do laundry and clean.

But Mr. E had other plans.  I had to complete a few things for the small job so I sat with Mr. E and did them.  While I worked he snuggled up next to me and pulled up a blanket.  I was sold.  A movie came on the Disney channel so we snuggled.  Mr. E told me that he likes mommy snuggle time, so we snuggled some more.  Lunch time came and I thought about feeding my boy, but I didn't want to ruin the moment.  It got to be a little late, so I started to get up, only to find that Mr. E had fallen asleep.  Now I really didn't want to move.

Then I heard noises coming from upstairs.  J was waking up.  I soaked up just a little bit more of the sweet, sleepy snuggles from my big boy (snapped a selfie), then pried myself away.  Baby J and I had some rare alone time while Mr. E snoozed.

I did eventually feed Mr. E, then we ran a couple errands.  J had another nap when we got home and Mr. E begged for more snuggles.  Who was I to turn that down?

I had to cut the snuggles short and make dinner.  I got three freezer meals made, plus dinner for tonight.  Usually Mr. E is under foot while I cook, but tonight he let me do what I needed to do and even helped a little when I asked.

After dinner we played and watched Dancing with the Stars (all three of us).  Then we had the easiest and most cooperative bed time we have had in weeks.  I don't think I yelled, lost my cool, or got overly frustrated once the entire day.  I may not have gotten the laundry all done, or my kitchen cleaned, but I am certain that I got everything done that I really needed to.  It was like my boys knew that tomorrow is going to be a tough day and they wanted to make it a little easier.

I just wish I could take days like today and bottle them up.  I wish I could store them on a shelf so that, on the really hard days, I could open them up and be reminded of just how sweet it is to be loved by the precious gifts that are my children.  I wish I could open bottles of days with Ethne so I could feel her squishy little self, smell her sweet smell, her her beautiful laugh, and watch her goofy run.  I wish I had bottles of all the best days to remind me of the things I have to look forward to.  I wish I had bottles, so that when I'm old and my memory starts to fail I won't ever forget the most precious times.

I am so thankful for the blessings of each of my children and especially grateful for days like today.

Monday, November 3, 2014

Ethne's 5th

With Ethne's birthday fast approaching I would like to make a request.  Each birthday that we miss we have felt a hole.  We miss buying presents and throwing a party for our Princess.  We visit the cemetery, have cake and ice cream, and send her balloons, but without her smiling face and happy hugs it's just not the same.

Ethne loved everyone and loved to show people how she loved them.  So with this in mind we would like to ask a favor.  In order to better celebrate Ethne's 5th birthday, and to better feel her presence we would like to invite anyone who would like to participate to preform 5 acts of service in the week leading up to and on her birthday, November 11.

We will be serving also and will make a post about it after her birthday.  We would love to share your stories too.  So, if you feel so inclined as to participate in our week of birthday service please take pictures and email us with your stories and we will share them too.  Thank you for helping us make this birthday for Ethne an Ethne kind of day by showing love to those around you!

Tuesday, October 28, 2014

10:20 am

Sweet Ethan returned to the loving arms of his Father in Heaven this morning. My heart breaks for the loving family he has left behind but I am also so very grateful for temples and eternal families.

Saturday, October 25, 2014

Christmas Eve

Last night was Christmas eve for the VanLeuven family.  And what a night it was!  Follow the link and be sure to watch all four videos, but if you only watch one, watch the 10pm video and listen to the sweet things Merrill says to Ethan about Christmas.

Friday, October 24, 2014

Yesterday and Today

A week ago I asked for help with a semi-secret project and I'd like to now share that project.  A week ago is when we found out about Ethan and his prognosis.  About a week before that my mom asked me to help her contact people and ask them to help us shower Ethan with birthday cards.  When we learned that his time was limited we knew we had to act quickly.  So we both posted to Facebook (blocking his parents and other family from seeing the posts) and asked for birthday cards to be sent to us to deliver to Ethan.  Over the weekend I collected several cards which we delivered on Sunday.  Over the next few days I collected even more cards, about two dozen that I took to Ethan on Wednesday so he would have them for his birthday celebration on Thursday.  I'm am happy to report that the cards continue to roll in and I will continue to deliver them as long as they keep coming.  I feel blessed to be able to help in this smallest of ways and to make these days just the tiniest bit brighter for Ethan and his wonderful family.

The story has gone national!

See his birthday celebration here (make sure to watch all 4 videos):

Thursday, October 23, 2014

Helping Ethan

A sweet boy heard about Ethan, here's what he is doing for him

If you'd like to know how to help Ethan and his family you can go here:

or here:

Wednesday, October 22, 2014

A Little Early Halloween

Little Ethan is nearing the end of his battle.  He has been given 2-8 weeks.  No matter when he finishes his mortal fight it will be far too early.  But his family and neighbors are doing what they can to help make these some of the best days by helping him and his family celebrate his life.  A local news channel found out about it and are doing a series of stories about Ethan and his amazing friends and neighbors as they celebrate Ethan and his favorite holidays this week.  Here's the first of the stories:

Thursday, October 16, 2014


I am working on a semi secret project.  If you would like more information about said project please comment with your email address or email me directly at .  If you think you might know what the semi-secret project is please don't reveal it, it's a secret!


Edited due to an autocorrect failure that changed my email address.  There is still time to help with the project.

Sunday, October 12, 2014

Mr. E's haircut

In case you haven't noticed, all three of my children have red hair.  It was one of the first physical traits I noticed about Ethne when they laid her on my chest after she was born.  It's also the first thing the nurses have all said to me about each of my babies.  We are often stopped by strangers commenting on how cute/cool/neat/pretty/etc. it is that both the boys are red-heads, and often we are asked if dad (who usually isn't with us) is a red head or where the red comes from.  I love the red.  I love that, even if my kids look nothing alike when they are older (who am I kidding, they all look like little clones), they will have this one trait that ties them together.

a tiny piggy after the hair tie had been removed
Ethne never had very much hair, much to my dismay.  When she was a baby I always made sure that she had a bow or headband on so that it would be obvious that she was a girl.  I asked hairdressers for tips to help it grow, I considered heeding the myth that shaving/cutting it would make it grow faster, and I tried to style it as soon as there was even a hint of length to do so.  By the time she was 18 months old or so I was finally able to put tiny pigtails in it.  She tolerated my neuroses well and let me comb, pull, and otherwise manipulate her hair to my heart's desire.

You can't put piggies, even tiny ones, in little boys' hair.

A few months back I told our hairdresser that I missed having hair to style so we gave Mr. E a faux-hawk.  Lawrence wasn't a fan, neither was Mr. E.  Then I just kind of let it grow (cue Frozen puns).  It got longer, and started to curl at the ends.  It covered the tops of his ears.  There was enough for some fairly decent piggies, maybe even a small braid or two.  People started to comment that it needed cut-- and I knew it needed it.  Long hair just didn't suit his personality, or our family, but I was loath to cut it.  Then Lawrence needed a cut, so they both went in.  This was not Mr. E's first haircut by any means, but for some reason I was hesitant.  Mr. E sat up in the barber's chair, let her put the cape on him, and held mostly still (for the first time) while he watched videos on Lawrence's iPod and his hair got cut.  He was such a big boy and made us proud.  And then he really was a big boy.  With his hair short and matching daddy's my Mr. E looked grown up.

It made me a little sad.

Sad because he didn't look so much like a baby any more...

Pre-haircut, by about a month
But more sad because he didn't look like Ethne any more.

matching haircut with daddy
I struggled to get used to the new cut.  It took me a few weeks to really put my finger on the reason it was bothering me.  It looked good on him and he was happy about it.  Then, one night, while I was checking on him and tucking him in before I went to bed, it hit me.  I cried.  He didn't have hair like his sister any more and that made me sad.  It wasn't like he had never had short hair before, he has been having his hair cut since just after his first birthday, but I had also never let it get quite so long before.

I think I can safely say that, after that night, I have accepted his new haircut.  It makes him look very handsome and more like the big boy he so very badly wants to be.  It makes him look like Mr. E.

I have learned that I probably shouldn't let it get so long again.  This monster called grief has it's way of sinking its teeth into so many aspects of life and I just never know when it is going to strike again.  But all the same, I couldn't live without it now, because to live without it would mean to forget Ethne and how she has touched my life-- and that is not something I am ever going to allow to happen.

Sunday, October 5, 2014

Surgery Prep

Before Baby J's pull through surgery I tried to prepare myself for the surgery and for life after the surgery.  I read about others' experiences, learned about the diaper rash and found some things to try to help with it, and got in touch with other HD parents.  But there are some things I wish I had checked up on and others that I'm glad I did.

In preparation for Baby J's surgery and subsequent hospital stay I packed a bag for myself, since I was the one that would be staying at the hospital with him.  I also packed a bag for Mr. E since he stayed with his grandparents most of the week.  I asked some other HD parents what they recommended I take with me.  I felt pretty well prepared for the hospital stay.  I found that the accommodations at the hospital were better than they were in the NICU.  There were shared showers for each wing of the unit, we had a shared room with a television in each half of the room, and a shared toilet and sink in the room, a pull-out chair bed, and every day a courtesy cart came up to the unit with free breakfast.  There was also a Ronald McDonald house a floor down that I was able to utilize a few times.

I wish I had called the hospital and asked about accommodations available to parents in the infant unit.  I also wish I had asked other parents what to expect during recovery from surgery.  Calling the hospital would have given me better insight as to what to pack and what they would provide for me and Baby J.  Had I asked other parents about recovery I would have been more prepared for some of the side effects of surgery I could expect, some of the stresses for me, and some of the requirements the doctors' would have for release.  I also would have been able to stock up better on supplies to combat the diaper rash immediately upon release, rather than having to take a trip to the store as soon as I got Baby J home.

In my bag for the hospital I packed:  enough clothes for the longest estimated stay, toiletries, lotion, hand sanitizer, towel, wash cloth, makeup, charger cables, my laptop, phone, pen and paper, some pre-packaged food, a few movies, pillow, blanket, slippers, my wallet, a water bottle, and my breast pump parts.

I was happy to have my own toiletries (the hospital had some, but nothing great), and my own pillow and blanket that made sleeping in the hospital chair/bed a little more comfortable.  My laptop and my own movies were really nice to have to keep me from getting stir crazy while staying in the same room for 5 days.  With the food I was able to avoid eating out too many times during our stay, avoid vending machine junk, and to also help out a few others with babies in the hospital.  I was also again able to pump breast milk for Baby J to have when he was allowed to eat, which I then donated to another mom who could use it when I probably wouldn't.

I wish that I had been aware that Baby J wouldn't get to eat until after his bowels began to function post-op.  I was quite worried about him being hungry and was frustrated that I wound up pumping longer than I had planned.  I wish that I had been warned about the potential for tummy upset once he was allowed to eat and the lovely vomit that ensued, I was scared for Baby J (there was a lot of it), and scared that the surgery hadn't really fixed things.  I also wish I had been told to stay on top of his pain meds and to not push weaning him off of them, I feel like I pushed weaning him off them too quickly in my haste to get him home and might have caused him some unnecessary pain.  I also wish that I had taken the advice of a friend who had spent much more than her fair share of time sleeping on a hospital chair/bed and taken an extra mattress pad to sleep on, I could have spared myself some sore muscles/neck/back.

I share this so I can remember in case we have a hospital stay in the future and also so that others in the same or similar situation can learn from my experience.

Sunday, September 28, 2014


Shortly after the accident I came to realize that grief makes people uncomfortable.  Those that associate with someone who is experiencing grief often don't know how to act or what to say.  Even now that I am in the thick of it it is hard to find words or actions to comfort, ease, or otherwise help someone who has just begun to grieve.  So many sentiments are so often repeated that they begin to fall on deaf ears, and others, though well meaning, can take too much effort to accept.

One such sentiment that so many so often use is "let me know how I can help," or variations of the same.  While I fully believe that those who say this do so sincerely, it often takes too much effort on the part of the griever to take others up on this offer.  When you are in the midst of a crisis of any kind you are bombarded by things that need done, emotions, and-- often-- well-wishers.  In any situation this is overwhelming, but when grieving it can be especially so.  I suggest just go and do, instead of offer.  I have had many experiences with such generosity.  For example, after I broke my arm I wasn't about to ask for help, but my mom, aunt, and a great friend all brought me dinners during the first week so I didn't have to cook.  They didn't ask or vaguely offer to do it, they said they were going to do it, and on which days, and then did it.  It was such a blessing and relief to have that help while I was trying to figure out how to do everything with one hand.  If you want to help choose something you want to do, when you want to do it, and then check with the person(s) that it will work for them.

It is also good to know that the people that are grieving are uncomfortable too.  From the outside looking in it is hard to know what to say or do, but it is the same on the inside.  It's hard to know how to respond to people, it's hard to know what to do in the situation, and it's hard to think ahead to answer many of people's questions, or how life is going to go on after the funeral (or other event) is over.  Sometimes the grievers meet new people and it gets uncomfortable again as these new people learn about the grief.  Other times situations arise that cause the grief monster to rear its ugly head and this can cause discomfort too.

Sometimes the best way to deal with all this discomfort is to just start talking.  Those of us who are grieving are not all that different from those who aren't plagued with this monster.  We want friends and companionship, it's just a little harder for us when people who don't know what to say avoid saying anything (or avoid us all together).  Some people don't realize they are avoiding someone who is grieving, and sometimes we don't realize that we are being avoided.  It is uncomfortable and difficult all around.  Just realize that a person dealing with grief is often more introverted and less likely to start a conversation and take the initiative-- they will probably thank you for it.

Another part of all this grief and child loss business that often makes people uncomfortable is how/if to talk about the lost child.  I realized, a year and a half ago, that I need to talk about Ethne.  I need people to know that she was is part of our family and is ever present in my thoughts and heart.  I came to the realization that not sharing her and her story with new people I may meet is like denying her, and I cannot deny her.  It seems that many times when I mention her to people, especially newer people in my life, they don't know what to say or how to react.  I often find myself telling people about my three redheads and I see the confusion on their faces as they look at my two boys, count heads, and can't figure out where I get the number three from.  Most people don't ask, but some do, I think most assume that the third must be in school or at home.  Others who know are still often awkward, not knowing what to say.  To be honest (this goes for me, not necessarily others) just acknowledging that she did indeed live, and then moving on would make me more comfortable than ignoring what I've said-- even a polite nod would be better than nothing.  Realize that, if the parents (and/or other family members) are talking about the deceased it is ok for you to talk about them, and to acknowledge them.

More than anything patience is the key.  Some days a grieving person will seem normal and happy and others we may not be able to get out of bed.  Be accepting and realize that, we really are fairly "normal" and have many of the same wants and needs as everyone else.  Be our friend, and realize that, just like you, things may be difficult or uncomfortable for the griever too.

Sunday, September 21, 2014

At the end of the day

At the end of the day I am tired and usually at the end of my rope-- patience is running low, children are cranky and uncooperative, dishes are piled up in the sink, and often Lawrence isn't home to help (managing retail often calls for unfortunate working hours).  But, somehow this is my favorite time of the day.

Mr. E Starts by picking up his toys while I pick up after Baby J.  Then the real battle begins, it's a fight to get him to go potty, a fight to get him up to his room, a fight to get him to take his clothes off, pick pajamas, etc., etc.  Sometimes I get a little short with him while we battle about these rather insignificant details, but after the battle comes the part that always makes up for it.  After Mr. E has taken care of his hygiene, changed into jammies, and has settled down a little from the day we sit in a rocking chair and read a story.  This is our time-- just Mommy and Mr. E.  Usually we read Curious George, sometimes it's a Junior story, or something else.  He snuggles his little red head into my shoulder, grabs a fistful of hair, and we read.  I often stop to ask about colors, shapes, numbers, animals, or other details (mostly in the pictures).  He answers my questions and also points out details he likes, as well as asks questions.  After his story Mr. E says his prayer, then crawls jumps into his stuffed animal filled bed.  Then we sing.  He gets 5 songs.  Nearly every night he chooses "I am a Child of God," "I Often go Walking," "Families Can be Together Forever," and some theme song from "Phineas and Ferb," there's rarely any variation.  Sometimes he sings along, but most the time he is content to let me do all the singing.  The last part of the night is even better than the rest of it combined.  This is when Mr. E climbs into my lap, wraps his arms around my neck and I sing "A Bushel and a Peck."  He gives me  an excellent hug, a kiss (on the lips), Tells me that he loves me, then climbs back into his bed as I turn out the light.

Once Mr. E is read to, sung to, and "in bed" it's Baby J's turn.  He doesn't put up a fight (yet).  He gets a new diaper, jammies, and some warm milk, then I also read to him.  His stories are much shorter and he doesn't hold still as well, but he also tends to grab a fistful of hair.  There are no questions and answers-- instead there's wrestling the book away from grabby hands that just want to pull it into his mouth.  Then we sing too.  Baby J only gets one or two songs and, you guessed it, "Bushel and a Peck" is always on the list.  We rock, snuggle, and I sing into his ear (which often makes him giggle),   then I kiss him about a dozen times, put him in his bed, and turn out the light.

Some nights I cry.  Every night I revel in the fact that I have been blessed with another day with these sweet, rambunctious, and smart boys.  Every night I take time to thank my Father in Heaven for the blessing of my boys and of the day we have had, and to ask for more days to spend with my Mr. E and Baby J.  I treasure this time I get to spend, one on one with each of my boys.  I am reminded of how special they are and this is the perfect ending to each of my not so perfect days.  No matter how frustrating, busy, productive or unproductive the day, at the end of it I am always grateful that it happened.

Sunday, September 14, 2014

Do you remember?

Mr. E, do you remember Ethne?  Do you remember how she used to ask to hold you?  Do you remember playing peek-a-boo and tickles with her, and the way you would smile and giggle at her?  Do you remember how she would help you with your binki when you'd cry, or how she'd play "this little pig" with you?  Do you remember splashing in the tub with her or snuggling in her bed while daddy read you both stories?  Do you remember her coming to see you in the hospital, the way she let us lay you on her lap while she ate pretzels?  Do you remember?

I do, but you probably don't.

Sunday, September 7, 2014


Most people have never heard of Hirschprung's disease and that means that they often have lots of questions.  Here's a few of the questions we get asked most often (some of this may be a bit of a repeat from other posts).

1.  What is it?
Hirschprung's disease is a condition that a person is born with that effects the function of the intestines in that the ganglion cells that move food and waste through the body failed to completely develop.  I recently learned that it can be described as a disease or a birth defect-- when it happens randomly and cannot be connected to genetics in any way it is considered a disease, when it can be linked to genetics, i.e. it is hereditary or occurs because of another defect or disability such as Down's Syndrome, it is a birth defect.  Baby J's Hirschprung's could be either (there is a small family history).

2. How much intestine was effected in Baby J?
A lot of other parents I have talked to know how many centimeters or inches of their child's intestines were removed, I don't.  I do know that he lost his rectum, all of the sigmoid colon, and about an inch of his descending colon.

3.  Will he have to have more surgeries?
The hope is that he will not need surgery again, but there is always a chance that something could happen that could make more surgery necessary.  Among the possible scenarios in which he might need surgery are severe enterocolitis, severe constipation, or a build up of scar tissue that causes a stricture.  As of right now, though, things look really good.

4.  How is he doing?
He is doing really well.  We started solids a few months ago and have learned that we have to introduce new foods slower than we did with our older kids and there are a lot of foods we need to avoid so that he doesn't get constipated or sick (rice, pears, peaches...).  He is still nursing and seems to prefer nursing to solids, though he eats those well too.  Despite our best efforts Baby J does occasionally suffer from some tummy discomforts such as gas pains and occasional constipation, but we work through these as they come.  He has been a little delayed on some physical milestones, but when you spend a total of three weeks in the hospital basically immobilized that will happen.  With a little extra work he is catching up on these milestones.  He is overall very happy and healthy and has two, very sharp, teeth.

5. What about the diaper rash?
His diaper rash is under control as long as I don't run out of my magic diaper duty supplies.

6. Is he all better now, will this effect him the rest of his life?
The answer to this one is a little complicated in that he is better in many ways, but this will probably effect him in some way for the rest of his life.  When you lose a major organ (or part of one) there are always complications.  Many times there are scars, sometimes there are dietary restrictions, risks of infections, or other complications.  Baby J faces most of these.  He has the scars on his tummy from the surgeries, he has scar tissue where things were reconnected that could build up and cause issues, he will most likely have food allergies/intolerances that will stay with him his whole life, he may never have "normal" stools, and he is always at risk for enterocolitis.  When he is older, probably about 3.5 or 4, and ready to potty train we will work with a group of doctor's to help him learn muscle control and possibly put him on some special diets to help his digestion and pooping.  There's a good chance that he will have to be on some kind of fiber supplement or laxative for his whole life to avoid issues like constipation.  For now, he is doing very well and, as long as we are careful about what he eats, he has few problems doing his duty.  Occasionally he will get backed up and we have to give him an irrigation (enema), but that is the exception, not the rule.  So the simple answer is, no, he is not all better, and yes, this will effect him the rest of his life.

I hope this can help answer any questions you, our readers, may have.  If you ever have questions about Baby J and his HD please ask.  I may not have all the answers, but I am always learning more about HD and will find the answers as best I can.

Sunday, August 31, 2014

Ethne's Headstone

Ethne's headstone was placed at her grave about a week before Memorial Day 2012.  Since then we have posted many pictures of it, but have never really talked about it or the images we chose to have engraved on it.

We have seen a lot of different headstones with a lot of different styles, stones, engravings, and images.  We wanted it to be special and to memorialize our Princess, but also classic.  We decided on grey granite because it's easy to keep clean and less likely to crack or break.  We also didn't want something high profile so we went with a flat stone with a slight angle to it.  We wanted anyone who saw it to be able to get a glimpse into the personality of Ethne.  Obviously we had her name, birth date, and death date engraved on the head stone.  We wanted there to be a vase or other receptacle for us to put flowers or other decorations in, so there is a hole for that at the top of her headstone.  We chose to have an elephant for obvious reasons-- Ethne and her "ephant" were inseparable-- but also because elephants never forget, and we will never forget.  The minion was also twofold in that it comes from one of her favorite movies and that it represents her personality so very well, she was so loving and willing to help, but also playful and mischievous.  There's a tiara, because she is and always will be our princess.  Last but not least is the inscription "Daughter of a King."  This inscription also has two meanings for us.  The first is superficial and plays into Lawrence's nickname for her-- Princess.  The second is more meaningful and comes from a beautifully written and illustrated children's book by the same title.

To summarize the story:  There is a farmer's daughter whose clothes are old and patched, she plays with the other town children and some of the richer children tease her, but she doesn't let this get to her because her parents have taught her that she is a daughter of the King and that he loves her, no matter what.  As she grows she has other experiences that teach her about being a daughter of the King and of how she can go to the castle to live with him some day.  She eventually marries a young man who has also been taught that he is a son of the King and they work together to be able to live in the King's castle one day.  They have children of their own and raise them in the knowledge that they are also children of the King.  Finally they grow old and take their journey to the castle.  The journey is hard, but they have each other for help and support.  Along the way they meet others on their way to the castle and they help these others along their journeys.  Eventually they make it to the castle and the King greets them, by name, with open arms and welcomes them home.

It is such a beautiful and profound story that teaches of each person's worth and of our mission here on earth in such a way that even children can understand.  It was one of Ethne's favorite bedtime stories and made even Lawrence tear up when he read it to her.  In so many ways this story and inscription remind us of our Princess.  She was so kind and loving to everyone and she knew that she was a princess.  It also reminds us that, not only will our father, the King, welcome us with open arms when our journey is through, but also that Ethne will be there, a crooked grin on her face, and her arms wide open and ready to give us great big hugs.

We hope that all those who see her headstone get at least a small clue of who she was is.

Sunday, August 24, 2014

My Nemesis

The stairs...

Anyone who knows me knows that I have a bit of a clumsy streak.  I blame this on genetics.  Stairs and I have never been the best of friends.  I fall down them, trip up them, and otherwise don't always get along with them.  Why this didn't cross my mind when we were looking at (and purchasing) a house I'm not sure, because things might have gone a little differently had I thought about my never ending conflict with stairs.  But it didn't really cross my mind and we purchased a house with a lot of stairs.  Don't get me wrong, I love our house, and I love our ward and neighbors even more-- I just have a love/hate relationship with stairs... all of them.

About a month ago I was carrying a pack and play down the stairs and took a wrong step, on the second step down.  I took a not so nice bouncy ride down the stairs and found myself bruised and walking funny for a few days.  To be honest, I feel lucky that it took me so long, while living in our house, to take such a tumble down the stairs.  I was also feeling lucky that I wasn't carrying Baby J at the time.

Last Friday (Aug. 15) I had another encounter with the stairs that did not end quite as well.  I was doing something that wasn't so smart.  I was trying to get some things cleaned and organized and in the process I had found several items that needed to go to the basement.  I didn't want to make a whole bunch of trips up and down the stairs so I was stacking stuff on the top step to the basement.  As I did so I leaned over the baby gate at the top of the stairs.  I thought to myself that I shouldn't be leaning over the gate like I was.  Just as that thought left my mind, said baby gate gave way and I went with it, head first, down the stairs.  Baby J and Mr. E were playing contentedly in the family room, so neither of them were in danger of getting hurt or coming along for the ride.  About half-way down I heard a lovely snap and before I knew it I was in a painful heap at the bottom of the stairs.  A quick self assessment told me that my head and neck were both fine and that the snap had come from my right arm.  I sat myself up, let loose a scream or two and gingerly placed my obviously broken right arm on my lap.  I found my phone a few steps up as Mr. E made his way down the debris littered stairs to me.  "Mommy, you fell.  Mommy, are you ok?  Mommy, you're crying..."  Yes, yes, yes...  My possessed phone was refusing to make an outgoing call.  I shut it off, "Mommy, your phone died."  Turned my phone back on and hefted myself to my feet with another scream.  Got to the top of the stairs and on the floor near Baby J, phone finally rebooted.  Try to call Mom, no answer, great.  Dad, no answer, shoot.  Try to call Lawrence at work, call is interrupted by Dad returning my call, possessed phone freaks out, hang up.  Dad calls back, "I fell down the stairs and broke my arm come take me to the ER."  Hang up, call Lawrence.  He feels helpless, tells me to call Sarah.  Call Sarah, she comes right over.  Meanwhile Baby J is upset because I'm upset so I somehow finagled him onto my lap.  Sarah made it over with another neighbor hot on her heels.  Sarah took J and started getting him food, second neighbor got E's swim trunks and took him to Sarah's house where there was a party going on, complete with a water slide.  Then the husbands showed up, and they gave me a blessing.  This helped calm me some.  Finally Mom and Dad showed up.  Mom took me to the ER, dad stayed with the kids.  Then it got boring.

We waited for an X-ray to tell us how bad the break was and if it would need surgery or could just be set.  Then we waited for the orthopedic doctor to come set it.  Some time during the waiting Lawrence got an employee to come in so he could leave work and be with me.  Then Mom got a call asking where my baking soda was, my youngest brother had been stung by a wasp, three times...  Mom left to attend to swelling post stings.  The orthopedist finally came with a team of doctors to put me out while he set my arm.  According to Lawrence I kept telling Mr. E to get off me, that he was hurting me, during the procedure.  They set the bone, splinted my arm and we waited some more, this time for the sleepy drugs to wear off and for the doctor to discharge me.  We didn't get home until 1 am...

On Monday I went back for more X-rays to see if the bone had shifted and to cast my arm.  Fortunately it was a clean break, it set well, and didn't shift, so I didn't need surgery!

Lesson learned, don't lean over baby gates.  I can laugh at it all now, so you can too.