Monday, January 26, 2015

The Haze

This has been a very difficult post for me to write, and part of me feels like it is a bit of word vomit.  With every post I think long and hard about what I should write, what I need to write.  I feel like I am often inspired to write the things that I do.  This is one of those posts that I know I have needed to write.  What I share in this post is personal, deeply personal.  I have tried to write a post like this multiple times and every time I let it sit in the blog archives as a draft or I delete it because I am afraid of sharing such personal things.  Recently, however, I have been feeling a particular push to get this post written.  I don't know why or what has triggered this sudden feeling of urgency, but it's there and I can't ignore it.  So please, if you read this, be kind and understand that, unless you have experienced the same things in the same ways that I have, you just don't really understand it the same way.

This is my last post in the five stages of grief from Elizabeth Kuebler-Ross.

"Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point?"; "I miss my loved one, why go on?"
"During the fourth stage, the grieving person begins to understand the certainty of death. Much like the existential concept of The Void, the idea of living becomes pointless. Things begin to lose meaning to the griever. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and sullen. This process allows the grieving person to disconnect from things of love and affection, possibly in an attempt to avoid further trauma. Depression could be referred to as the dress rehearsal for the 'aftermath'. It is a kind of acceptance with emotional attachment. It is natural to feel sadness, regret, fear, and uncertainty when going through this stage. Feeling those emotions shows that the person has begun to accept the situation. Oftentimes, this is the ideal path to take, to find closure and make their ways to the fifth step, Acceptance."

"Depressed mood is a feature of some psychiatric syndromes such as major depressive disorder,[2] but it may also be a normal reaction to life events such as bereavement, a symptom of some bodily ailments or a side effect of some drugs and medical treatments."

Not long ago I realized that I had been living in a sort of haze.  I was on some kind of auto-pilot, going through a lot of the motions, not really putting a whole lot of thought and effort into many of the things I did regularly.  I developed a sort of daily routine with Mr. E and later with Baby J that allowed for me to remain in this sort of waking sleep.  This wasn't a new thing, it started round about the time I woke up in the hospital and what I suspected about Ethne was confirmed.  That means that for the better part of two years I was in this haze.

My days (pre Baby J) looked something like this:

Get up when Mr. E got up, about 8-ish, feed him breakfast, get him dressed, let him pick a show or movie.  Once the show or movie was going Mr. E and I would hunker down on the couch together and I would fall asleep while we snuggled.  Around noon I'd feed him lunch, he'd play until 2-ish when I'd put him down for a nap/quiet time.  While Mr. E napped I'd usually veg, binge watching tv shows, napping, or folding laundry.  Mr. E would get up and play or watch tv while I fixed dinner, often it was something easy, a recipe I had memorized.  We'd eat, more snuggling or bath time, then bed for Mr. E about 8:30.  Every day looked roughly the same with little variation.  After Baby J the days were somewhat similar, just with nursing sessions in between and Baby J involved in the cuddles.
* * *

Not long after the accident several people suggested I go to counseling.  So I went.  The therapist would sit in her chair and ask me to talk about my feelings.  The problem was, I wasn't sure what exactly I was feeling at the time.  All I knew was that it felt like my heart had shattered, but was somehow still beating-- the shattered pieces rubbing their fragile edges together cruelly as they tried to pump pudding thick blood through my veins.  My world revolved around my kids and Ethne had been at the center of my world for just over two years, that was suddenly gone.  Yes, I still had Mr. E, and I thank heaven every day for him, but for a month or so after the accident I wasn't allowed to pick him up and I could hardly hold him by myself, much less get on the floor and play with him.  I had to spend my days practically being babysat, unable to do so many things for myself.

I remember one night, while we were staying with my parents, the week after I had been released from the hospital, I was in bed and Mr. E was supposed to be going to sleep, he was in a crib in the same room as Lawrence and me, and he started crying.  No one else was upstairs, I was trying to call for someone to help, but no one could hear me.  So I got up, very slowly made my way around to his crib, and tried to comfort him.  I couldn't stand up unsupported so I was leaning heavily against the crib, I couldn't look down at my distraught baby because of the neck brace, but I could hear his cries and I could feel his tender arms reaching, grabbing, begging for me to pick him up.  I cried, he cried, and Lawrence finally came back to find us in this mess.  I think that was when the severity of my injuries really sunk in for me.  I also think that's when depression started to take hold.  Yes, I had been very sad before, but the reality didn't quite sink in until that moment, when I was unable to help my baby when he needed me.

Just like I wasn't able to be there for Ethne.  And now she is gone from this mortal sphere.

After that incident I just started doing the bare minimum.  I quit seeing the therapist, it was just frustrating and emotionally draining to sit and talk to this woman who didn't understand at all and I could never explain my grief to her.  Many of the same people urged us to go to a group for bereaved parents, so we did.  This was better, to be with people who understood better what it felt like to suddenly have your world fall out from under us.  Lawrence noticed the haze creeping in more and more as I avoided callings in church, stopped reading my scriptures regularly, etc.  He shook me awake some, helped me get back into some better habits, and they helped immensely.  But I was still weighed down, blanketed by this haze that wouldn't let me fully engage.  I also got better at hiding it, putting on a good face when people were around, but it was always there, just below the surface, waiting for my facade to come down.

* * *

I don't remember exactly when it happened, but it started some time between Baby J coming home from the NICU and his second surgery.  I was able to stick my head out above the clouds a little at a time, and I liked what I saw.  So I started making more of an effort to keep my head out of my hazy clouds.  I still had snuggle time with Mr. E, because that is something he needs and enjoys, but I wasn't sleeping through it all the time.  I also started getting down on the floor with my boys.  I worked with Baby J as he tried to master rolling and sitting up.  I wrestled with Mr. E.  At first it was hard to hold my head above the clouds for long, and these play times and times of real engagement only happened occasionally, and were short-lived, but I found that, as I did them more, the stronger I became and the easier it was to stay up above the haze.

I can't say that every day is all sunshines and rainbows now, that is definitely not the case, nor do I ever expect it to be.  All I expect of myself is that I keep trying, and the days when I'm not strong enough to ride above the haze I will take and try to be stronger the next.

"Sorrow comes in great waves... but rolls over us, and though it may almost smother us, it leaves us.  And we know that if it is strong, we are stronger, inasmuch as it passes and we remain." ~Henry James, "Letter to Grace Norton" Henry James: Selected letters

I have come to realize that I don't want my boys to grow up thinking of me as their sad Mommy, their barely present Mommy, their sleepy Mommy.  I want them to have memories of playing with me, of happy days spent engaged and involved.  So I will continue to try to hold my head above the haze that is the depression of grief.  It is an every day struggle, and sometimes I lose.

The days that I win often have a lot in common.  They are days when I stay busy.  Days when I don't sit on the couch and watch movies and tv.  To have more winning days I find that I have to start the day engaged, I cook breakfast (sometimes something as simple as oatmeal does the trick, but usually it has to be more), I try keep the tv off much of the day, I exercise, we have family scripture study and prayer, I color with Mr. E, I tickle Baby J, we have picnics and playdates, run errands and do chores.  I have found that keeping busy helps keeps the haze at bay, I can still feel it looming-- it is always there, but being busy and engaged help keep my head up.  I still find time to snuggle Mr. E, it's his favorite part of the day, but I try limit the time spent in mindless pursuits.  I also work hard at reading scriptures daily and having personal prayer, sometimes I am better at it than others, I really do have to work at it.  I am by no means perfect, and it is going to take a lot of time before I get this really figured out, but as long as I recognize what is happening I can find tools to combat the haze of depression.

Sunday, January 18, 2015

Little Brother

Dear Baby Brother (I),

Just last week you celebrated your 5th birthday.  You were pretty excited about it and knew just what you wanted... Legos, or more specifically, The Flash legos and super hero legos (I pointed out that they were pretty much the same thing and you rolled your eyes at me).  You were so excited over all your presents, even though the Flash legos weren't among them.

I wonder if you noticed how hard it was for me to watch you do these things that Ethne should have done exactly two months earlier.

I remember well when you joined our family.  You came via foster care and were in sad shape-- your tiny body was bruised and broken, and I am willing to bet that your heart was too.  I was visiting while you stayed in the hospital and Mom spent a lot of time there with you.  Ethne was about 5 months old and was there when you came home.  She was certainly ahead of you in so many ways, but you two seemed to bond as she rolled around and climbed on you while you tried to adapt to your new home.  Then mom broke her toe/foot and we knew that meant you were there to stay, it just took the state a little longer to figure it out.  I watched from afar (mostly) as you healed and grew.




Then we moved to Utah.  That bond that you and Ethne shared in the beginning remained and became stronger as you spent more time together, especially as I student taught and after I went back to work.  You were still behind Ethne, developmentally.  You two were a team against Mom/Grandma-- you'd cause the trouble and Ethne would report.  Those beatings you took as a baby had slowed down your learning and Ethne was running circles around you in verbal skills, gross motor skills, and especially fine motor skills.  She showed you the things she knew, like how to drink from a straw and regular cup, how to use a spoon and fork, and she talked your sweet little ears off.  You watched her carefully, you listened to her stories, and you followed suite (now it's nearly impossible to get you to stop talking).  She was not only your niece, but your best buddy too.  We thought you two would grow up together, be best friends forever, but that was not to be.

I hope that you know that, even though it is sometimes hard for me to see you grow up without her, I love you.  I know that you are meant to complete our family.  You filled a hole that we didn't even really know was there until you had filled it.

I'm so glad Ethne had you there to show her how to get into mischief and make messes.

I'm sorry that she's not around to help you make those messes and to help keep you in check when you try to steal her lunch or do something naughty.

There are days when I just can't muster up the strength to see your smiling face, to count the increasing candles on your birthday cakes, to watch you cross another milestone that Ethne won't get to cross along with you, and days when it is all I can do to not cry as I watch the way you play with Mr. E and Baby J in ways that I imagine she would.  Please forgive me when I can't be there.

I love you, and I think that's why it is sometimes so painful, because I love her too.

Love,
Your big Sister

Sunday, January 11, 2015

The First Few Days

A little over a year after Baby J's birth I have been reflecting.  I feel like I should share some of the experiences we had in the hospital after his birth and while he was in the NICU for the benefit of others.  Before I share, though, I want to make it clear that I appreciate every doctor and nurse that cared for us during this time.  Despite my frustrations (that will become evident hereafter), they were doing their jobs to the best of their abilities and trying not to make us worry too much.  Doctors and nurses have very difficult jobs and I truly appreciate them for all they do.  I feel I should also warm those who might be squeamish, there's some details about procedures that Baby J endured that might make you squirm.

about 36 hours old
Day 1, Dec. 26:  My water broke in the wee hours of the morning the day after Christmas.  When we arrived they got me right in and hooked up to iv and monitors quickly, when I was ready for my epidural they got the anesthesiologist came as quickly as he could.  He struggled getting the needle into the epidural space because he had me sitting up and my belly was just too big for me to bend enough to make the space big enough, but as soon as I laid down he got it right in.  The nurses were courteous and the delivering doctor was understanding of my special circumstances (not being allowed to push hard or for too long because of my carotid artery).  It was wonderful and very special to be able to hold Baby J immediately after he was born and they let me hold him for what seemed like a long time before they took him to clean and measure him, the even did his first APGAR test while I held him.  After he was cleaned and I was feeling like sitting up Baby J was very eager to eat and latched on right away.  They let him eat to his heart's content before they moved us to the mother baby room.

Day 2: I was anxious to get home, I don't like hospitals and just wanted to have my whole family together.  I figured that since his birth was so uneventful that we would be released in the afternoon/evening.  This was not to be when his pediatrician came to visit and learned that he had not pooped.  She told me that this was one of the requirements for babies to go home, and as disappointed as I was at the time, I now completely understand why.  This is about when problems started popping up.  Baby J had been nursing for short bursts about every 3 hours since his birth, but that suddenly stopped after 24-hours.  He wasn't really waking up to eat and when I tried to get him to nurse he just wasn't interested.  Baby J was gagging occasionally and soon he started spitting up yellow.  The nurses kept telling me that it was all fine as long as it didn't turn green and stayed in small amounts.  This is also when they started taking him to try and stimulate him and get him to go.  As the day progressed he continued to refuse to eat so we tried some other techniques, a nipple shield, pumping and then giving him the bottle, and S and N (nursing with a small tube attached to supplement with formula), and the lactation consultant came for a visit.  Then his spitting up increased and he still wouldn't eat.  The spit up turned green and had flecks of brown in it occasionally, I was very concerned by this point.  Every time he spit I called the nurses who came in and kept telling me (as if I was a first time mom and just didn't know) that spit up was completely normal and that the color was fine.  I kept insisting it was't and they kept trying to downplay my concerns, it was really frustrating.  I finally stopped calling them, they weren't listening to me and they were treating me like I didn't know what I was talking about.  Lawrence and my dad blessed him, I felt a little better.

anderson in his mouth to prevent spit-up iv in hand
Day 3:  They finally decided to do something.  The on-call pediatrician ordered an x-ray of his tummy to try and see what might be causing the problem.  The x-ray showed gas trapped in his bowels and that his colon was narrowed on the left side.  This is when they decided to send him to Primary's and the NICU.  Lawrence was out having a special breakfast with Mr. E.  They rushed back when I called with the news.  They told me that he would have to be transported either in a helicopter or ambulance.  That's when I lost it.  I basically begged the doctor not to send him in a helicopter, my mom was there, she explained why.  He went in an ambulance.  By the time the ambulance and the transport team arrived Baby J was rather dehydrated.  They had a difficult time getting an iv in him, it was really hard to watch them continuously poke my baby boy.  When we got to Primary's they gave us a very quick orientation, showed us how the NICU worked, where the pumping room was and where and how to store milk, then took Baby J for another x-ray.  Mom made me eat, Lawrence went with J.  The second x-ray they injected barium contrast into his bum to see if it would shed light on the situation.  It shed some light, but didn't give a definitive diagnosis.

that's an iv in his head, the one in his hand went bad
Day 4-7:  Were spent waiting.  Holidays tend to slow business processes down and hospitals are no exception, labs were running slower than usual.  J had an iv and a central line that were giving him fluids and nutrition and was having lots of wet diapers.  For about 24-hours after the barium x-ray his body slowly expelled most of the barium, but nothing else.  His nurses in the NICU were very compassionate and so wonderful to us.  We went home every night to sleep in our own bed and to let Mr. E sleep at home as well, he spent most of the days at Grandma and Grandpa's house playing with his uncles.  On day 5 they finally came and performed a biopsy of Baby J's rectum to make a final determination about what was causing his problem.  The results from this took two agonizing days.  Day 7 presented the official diagnosis of Hirschprung's Disease and we were given a plan of action.

Day 8:  Surgery day!  After the biopsy result the surgery resident explained to us that his surgery would be in two parts, one where they would find the "transition zone" where the ganglion nerve cells had formed and place an ostomy then he would have another surgery later to reconnect everything.  I was too dazed to ask the questions I should have asked about why they were doing the surgery in two parts and what the heck an ostomy was.  My mom knew what he was talking about (she was there with me at the time, Lawrence had to work, or had a cold, or maybe both), but I was feeling a little lost.  I wish I had asked.  On surgery day they took my baby to a place I wasn't allowed to go and we had to wait in a room full of other anxious parents.  They couldn't tell us how long the surgery would take because of the nature of it.  The way it worked is the surgeons took cell samples every few centimeters and sent them to be tested for the ganglion cells until they found the transition zone.  The length of the surgery was dependent on how long it took for the pathologists to get the results and how much of his intestine was effected. Lawrence made me eat, the cafeteria had blueberry pancakes and bacon.

Day 9-11:  More waiting.  We did make some friends while in the NICU, other parents with sick babies from all over.  One from Cedar City, another from Vegas.  It was good to have people to talk to during the long, quiet hours holding my baby with all his tubes and wires.  On day 10 they finally let him have milk through an NG tube (nasal gastric, up his nose and down to his belly). Little bits at a time to see how it would effect him and his digestion, gradually increasing until they decided he would be allowed to nurse.  Day 11 they had me do a lot of "teachings" that were required before he could go home.  There was a video on ostomy care and a CPR video, complete with creepy CPR dummy baby that we got to take home.  The wound care nurses also paid us a visit and talked about ordering supplies to take care of his ostomy.  Again, I wish I had asked more questions about what they were ordering for us and why because we wound up with things that we never used.

Day 12:  On our way up to the hospital Baby J's nurse called to ask if I could spend the night with him so they could evaluate how well he was nursing, I also feel like they wanted to check my competency (or something).  We were already half-way there and didn't want to turn around so I could gather supplies, so at lunch time we ran out and picked up a few things I would need for what we thought would be an overnight stay.  The wound care nurses came by again to give us a chance to change his ostomy bag and let us know where the supplies would be coming from, get insurance information, and our mailing address.  The first time changing his bag was nerve wracking, it's difficult to see part of your baby's insides on the outside and you want to be so gentle with them when all the nurse is telling you to do goes somewhat contrary to that.  J was also allowed to actually nurse by this point and he seemed anxious to do so, but was also a little lazy about it.  But he didn't like the bottle either...  Lawrence had to leave us since there wasn't room for us both in the family room and he had to work part of the next day.  I was stuck at the hospital, no car.  At some point during the night Baby J's monitors decided they didn't want to work properly and the computer started panicking and beeping every 5 minutes.  The sweet nurse fixed it, but it only lasted about 12 hours.  J's ostomy bag that I had just learned to replace also sprung a leak.  The night nurse didn't know how to apply a new bag so I got to try it by myself.  I was nervous and it took a couple tries, but I got one on, that promptly sprung a leak a few hours later...

Day 13:  What we thought was supposed to be an overnight stay was actually a 36-hour stay.  I was getting frustrated and anxious.  I didn't like being cooped up in the hospital without a car, I hadn't had a shower and didn't have clean clothes.  Lawrence brought me some clothes and a few other things for the second night.  Some time during the day the nurses got word that one of the former occupants of J's NICU room had tested positive for an antibiotic resistant bacteria and we had to take extra precautions to contain it.  This meant more hand washing and wearing a goofy gown until we were cleared.  This also made me even more anxious to go home.  Fortunately J's new bag stayed on all day.  I didn't sleep well this night because I started having flashbacks and dreams about my stay in the hospital after my car accident.

Day 14:  I was done.  Nurses and doctors had been telling me for days that he would eat better and gain weight better at home, but that he wasn't gaining enough weight yet to clear him to go home.  How contradictory!  I was on the verge of walking out with my baby whether they cleared him or not.  My mom talked some sense into me and told me to explain my frustrations to the doctors.  A lactation consultant and occupational therapist visited to make sure I was nursing properly and that J had a good latch and suck.  They both noted that everything looked great, just that he was a little lazy, and made the same comments about him doing better at home.  When the doctors came by for rounds I put my foot down.  I told them that I needed to take my baby home, that I was having flashbacks, and pointed out contradictory statements.  They made me promise to take him to the pediatrician to be weighed the next day (Friday) and the following Monday for weigh-ins and set up a home health nurse to check in on us too.  Then there was a car seat check to be sure he would breathe fine in the car seat and that the straps were adjusted properly.  We had to wait for Lawrence to get off work at 5, and we were free!


We were so happy to finally have our whole family together under the same roof.  We stopped to pick up Mr. E and my parents also supplied us with dinner.  Baby J was two weeks old and finally home!




Wednesday, December 31, 2014

With Hope

I was talking with a friend recently and she told me about a conversation she had with another of her friends about grief.  They were discussing how long it is ok to grieve after the loss of a loved one, especially children and spouses (the second friend lost her husband two years ago).  Both came to the conclusion that it is ok to grieve for the rest of your life.  The first friend then asked the second how she continues to live her life each day.  The second friend told her that she does it for her kids and for hope.

I have often been asked the very same question, "How do you do it?  How do you live each day after such a great loss?"  Usually I shrug my shoulders, which is really a terrible answer, or rather, not an answer at all.  But then I think that maybe I was so noncommittal about my answer because I didn't really know how I do it myself, or maybe because it has been difficult to put it into words.  But I think I found my words...

"Hope is what guides me, it is what gets me through the day and especially the night.  The hope that after you're gone from my sight it will not be the last time I look upon you."  ~"A Knights Tale"

I was watching this movie and these words really stood out to me because they ring so true.  The friend of my friend is right, I get myself out of bed every day for my boys and for my husband.  They are my motivation every day because they get up and live every day too.  The boys may not feel the loss of Ethne as keenly as Lawrence and I do, but I think they feel it at least a little, but even if they don't feel it at all, they need me, and I need them.  And Lawrence needs us too.  However, there are some days that are harder than others, even with boys that need me and life that is required to be lived, sometimes the thing that pulls me out of bed and gets me going is hope.

It is a hope that nothing but the Gospel of Jesus Christ can give me.  No where else can I find the teachings of eternal family.  No where else can I learn that I will get the chance to not only see Ethne again, but also raise her in a perfect world where she will not suffer temptation.  No where else can I find the peace in the knowledge of a loving Savior who was born to this earth to suffer not only my pains and sicknesses, but also my grief and sadness, and that of those around me, and all mankind, as well.

It is armed with that hope and that knowledge that I am able to "do it."  To get myself out of bed every day, despite a huge hole in my heart and my family, to continue to follow the counsel of the Prophet and other church leaders, and to continue to read my scriptures, pray, and attend the temple.  Because, without that hope, and without that knowledge, none of it would really be worth all the effort.  So instead of giving up I hope and because I hope I can live.

So it is with hope that I go into this new year and face all the really hard days (our 3-year angel-versary, Ethne's birthday, other holidays), because this new year brings renewed hope that I am one more year closer to seeing Ethne again.

Friday, December 26, 2014

Rainbow Baby

A rainbow baby, as defined by Urban Dictionary is a baby born after miscarriage or stillbirth, but most angel mommies define this as any baby born following a loss.  It is a reference to rainbows that form after a storm that bear the promise of brighter days ahead.

Baby J is our rainbow baby.

And what a rainbow he has been.




Sometimes there's a storm and then there's some calm when the sun shines and everything seems good, a rainbow even forms, but then the storm rears its ugly head again.  Baby J's arrival was much like that.

During my pregnancy I struggled both physically and emotionally.  My body was still in recovery mode and I hadn't gotten into as good of shape as I should have.  I had pain in my hips, especially my left hip, that made it difficult to sleep, bend, and even walk sometimes.  But worse than the physical pain was the emotional pain.  I struggled to allow this baby into my heart.  I tried, but it was much, much more difficult than I anticipated.  I knew that this baby was meant for us, that he could help at least put a bandage on my broken heart, but it was still so hard to let him do that.  Until he was born.

I remember the first words I said to/about Ethne, I think I even remember what I said to Mr. E.  I am most certain of the first words I said to Baby J, I sang "Bushel and a Peck" to him.  And in that moment I felt Ethne in the room with us.  I knew that she had escorted her brother into the world, and that she was there to help me open myself up to him.  For that moment the constant ache that started when Ethne passed away abated and was replaced with incredible love and joy.  For that moment all three of by babies were, at least in spirit, on this earth and very present, safe, and happy.  It was far to short-lived, but for a few days it was very easy to reflect on that feeling and to allow my sweet new baby into my heart.  This was the eye of our storm and that sacred, special moment was the biggest, brightest rainbow I have ever experienced.





Then they whisked him away.  Ok, it wasn't so much of a whisking as much as a slow process in which the nurses made me feel like an over-protective, clueless, first-time-mom and the doctors made me worry excessively before they finally determined something was very wrong and that my baby needed more specialized care.  The storm had returned.  Now I was left with an aching for my baby that was sick along with the permanent ache of grief for Ethne.  He was blessed, tested, poked, and monitored more times than I can remember.  When he was finally diagnosed a small weight was lifted from my shoulders, the storm lightened a little.  But my baby still had to endure surgery and recover.  Two very long weeks after his birth my Baby J was able to come home.  The storm was over and the rainbow was cast, nearly as bright as the rainbow at his birth.

I am so very much in love with my sweet, happy, and gentle baby boy.  I am so grateful for the experiences we have had with him, the bad and the good.  He is such a special and brave boy that has blessed our family in so many ways.  He is a miracle, in more ways than one, just like a rainbow after a storm.  His smile lights up a room.  His beautiful red hair and blue eyes, just like his sister's, draw everyone he meets in.  I am so very, very thankful for my rainbow baby, not only once, but twice!

Happy birthday, sweet Baby J.  Thank you for being our rainbow!


Saturday, December 13, 2014

A Year in Review

My family never sent out an annual Christmas card, and I've yet to get into the habit.  So instead of mailing out a card I'll just write one here.

Our family has had one heck of a year with a new baby, surgeries, broken bones, and lots of new adventures.  Here's a little of what we've been up to.

This year started out with a scary diagnosis of Hirschprung's Disease for our newest addition, Baby J.  Before the diagnosis we knew nothing of this disease, but now I'd say that we know quite a bit and continue to learn more every day.  Baby J had a surgery to allow his intestines time to heal and his little body time to grow with a colostomy before he was given a pull-through surgery to allow his body to function in a more normal manner.  Since coming home from the NICU Baby J has been growing non-stop.  He is by far our chubbiest baby and we don't mind one bit.  He has such a fun personality!  He enjoys reading, playing, eating, and singing, but (unless he's tired or it's bed time) he isn't a super snuggle bug.  He sports the same red hair and blue eyes as his sister and has been a wonderful addition to our little family.






Mr. E has had a big year too.  This year he passed his sister in age and turned 3 and also got potty trained!  With the addition of Baby J he became a big brother, something he struggled with in the beginning, but is really coming into the roll well now.  He enjoys helping with Baby J, and sometimes tries to be another parent to him.  He has really enjoyed nursery and started going to a preschool group with some other kids in our neighborhood.  He loves school and asks to go every week.  He is looking forward to Sunbeams next year (I can't believe I will finally have a Sunbeam!) and already knows many primary songs.  His best buddies are his uncles, G and I, but he also has friends in preschool and nursery that he likes to play with.  Mr. E loves to swim, play games, read stories, snuggle, and be outside.  He enjoys visiting Ethne at the cemetery, but I think that's mostly because he usually gets to play at the park afterwards.  He loves anything furry, to the point of near abuse, and we wonder why our dog is always so happy to see him in the morning.  This boy sure keeps us on our toes with his quick wit and goofy imagination and we love every minute of it!

PictureLawrence keeps busy managing a Payless Shoe store.  He also plays with a band, Rythym Junction.  They released a CD this spring (you can find it on Amazon and iTunes) and are currently working on recording another one to be released some time next year.  He also still plays with the community symphony and other free-lance gigs when his schedule allows.  He enjoys his calling as a primary teacher, teaching the 7-8 year-olds and attending their baptisms.




I have had a busy year, keeping up with two crazy boys and our dog.  I started the year with a good number of flute students, but they all fell away during the summer.  At the end of the summer I had a small disagreement with a baby gate and some stairs and broke my right arm--it is healed and I am working on getting full range of motion back, but rest assured that I can play my flute.  When school started back up a local high school teacher recruited me to help with an army of sophomore flute players that descended on his band program this year--17 of them, in one class!  We split them up into two flute choirs and are preparing for their first concert coming up in a couple weeks.  It has been fun to be in a classroom again and working with these talented young women.  I also recently started a new blog of tips and resources for musicians and music teachers.  In October I took on the task of teaching Mr. E's preschool group and hosted a Halloween party for the cute kiddos and their mommies.  Somehow I have lucked-out and both boys take a long afternoon nap at the same time that gives me time to clean, sew, craft, blog, or sometimes even sleep!  I am so grateful for my husband who supports our family so I can be home to raise our boys, I definitely got the better end of that deal.

I am certain that Ethne continues to watch over us.  There are times when I can feel her presence very strongly.  For her birthday this year we invited friends, family, and strangers to participate in 5 acts of service in her memory.  It was a busy day and we could certainly feel the love of Ethne and of others as they participated in our challenge.

It has been a busy and productive year for all of us and we look forward to all the next year will bring.  We hope that you all have a wonderful Christmas and New year!

Saturday, December 6, 2014

Tangled

A post or two back I mentioned watching Tangled with Mr. E on Ethne's birthday.  I also mentioned that the end of the movie hit me in a way it hadn't before.

After Ethne passed I tried to avoid certain triggers, including certain movies she loved.  We didn't watch "Despicable Me" for about 8 months after the accident.  I still haven't watched "The Little Mermaid," and it wasn't until a few weeks ago when Mr. E came to me with it in hand did I really sit down and watch "Tangled."  Mostly I sat and snuggled Mr. E while he watched and I distracted myself with games on my phone, Facebook, and other things.  But I really watched it on Ethne's birthday.  We sang along with the songs, we laughed, and I cried.

In the beginning of the story Rapunzel is taken by an old witch who keeps her true identity secret.  When she is taken she is an infant with lots of blonde hair.  Through a series of tests and adventures Rapunzel learns who she really is and finally returns to the anxious arms of her loving parents.  She no longer looks the same as she did when she was a baby.  In the end she has short, brown hair, and is a young woman-- but despite her changed looks, her mother is able to recognize her and embraces her, grateful to have her daughter back in her arms.


Now I am not, in any way, suggesting that I think Ethne has been taken from me in a malicious way, but she is gone from my sight, for a time.  The scriptures and prophets teach that our spirits take the form of our adult selves, only perfected (no scars or flaws, Ether 3:16 and Teachings of Presidents of the Church: Joseph F. Smith [1998], 131–32).  Watching the end of Tangled had me wondering if I will recognize Ethne when I see her again.  Despite suggestions that the Millennium could happen in my life time, I am of the impression that I will pass away before then.  This means that the next time I see Ethne she will be in her spirit form and will therefore be an adult and not the little girl I said goodbye to two and a half years ago.  It made me very sad to think that I might not recognize her.

I thought about it all day on her birthday.  We were so busy serving, loving, and celebrating that I didn't get a chance to talk to Lawrence about it until late that night.  He reminded me what President Ezra Taft Benson said, "Nothing will surprise us more than when we get to heaven and see the Father and realize how well we know Him and how familiar His face is to us.”  Lawrence then told me that he believes it will be the same way with Ethne.

I sure hope so.

I hope that there will be no question for me the next time I see Ethne.  I hope that I will recognize her beautiful smile and be able to embrace her the way Rapunzel's parents do her.  But I do know, that either way, I will be so very grateful to have my Princess in my arms again.


Wednesday, November 26, 2014

Baby J update

I haven't updated about Baby J in a while...

When Baby J was born and when he was diagnosed with HD we were so scared.  Scared that his HD would be worse than it is, scared that he would have other problems, and scared that he would not gain weight and grow as he should.  Facing a rare disease, or really anything new is scary.


I am happy to report that we feel very blessed.  Over the last 11 months we have watched Baby J learn and grow.  He has hit his milestones within the prescribed time, though admittedly a little slower than his older siblings.  Since being released from the hospital after his surgeries he hasn't had problems gaining weight.  He is happy, he is healthy, he is a squishy chunk of baby.

We watch him grow and feel a mix of happy and sad.  We want him to stay the squishy baby he is, but we are happy that he is doing so well.  After he was diagnosed we started to look at stories from other kids with HD and found that many of them struggle with a myriad of issues including poor weight gain, lots of infections, lots of food allergies or intollerances, chronic constipation, and others.  We feel so blessed that we haven't had to deal with many of these.

Yes, there are foods we avoid or haven't even tried to feed him in an effort to steer clear of some of these issues, and we are always on alert for others-- but it really is a miracle that Baby J is doing so great.  He eats better than his brother, he sleeps well, he army crawls faster than some trained soldiers, and, of course, he poops well too.  We celebrate every blow-out diaper, we relish each chubby roll of baby fat, and work for his bright smiles and contagious giggle.  I have never met a child who loves the game Peek-a-Boo as much as he does and he hates "This Little Piggy," it makes him cry.  He has taught us patience, perseverance, and the power of prayer and priesthood blessings.  He is truly a gift to our family and we are grateful for him every day!

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:

http://www.operationgratitude.com/wp-content/gallery/care-packages-arrive-2013/20130106adf8106603_004.jpg1.  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:

http://elizasownlittleworld.blogspot.com/2014/11/on-this-very-special-day.html

http://mylife-plana.blogspot.com/2014/11/a-day-for-remembering.html

http://kathrynlesliestone.blogspot.com/2014/11/a-special-day-of-remembrance.html



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.  lmeestone@gmail.com  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.

http://www.ksl.com/?nid=148&sid=32083427#oowaOauefpIcMA8A.01

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!

http://www.today.com/video/today/56292584#56292584

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

http://www.ksl.com/index.php?sid=32074766&nid=147&title=utahns-celebrate-holidays-with-terminally-ill-boy-for-the-last-time&fm=home_page&s_cid=topstory

Thursday, October 23, 2014

Helping Ethan

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

http://www.ksl.com/?nid=148&sid=32064511#hCVoLLej9qDTFw6O.01

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

https://www.facebook.com/fundraiserforethan

or here:

http://www.gofundme.com/ethanourhero

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:

http://www.ksl.com/?sid=32047963&nid=#ijxrWTzjUCQ7P2si.01


Thursday, October 16, 2014

Shhh...

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 lmeestone@gmail.com .  If you think you might know what the semi-secret project is please don't reveal it, it's a secret!

Melissa

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