Jilly's Journey

So this is the story of my adorable niece, Jillian Bea Pierce.  She lives in Pittsburgh.... and she's going to be a Pirates fan, I'm sure.  She was due to make her appearance in this world during the first week of April.  Instead, Mom's body had different ideas and she came early..... like January 29th early.  Everything during those first few days were touch and go..... mommy Holli was sick, daddy David was scared, brothers Grayson and Archer were confused and Baby Jilly was TINY.  Here is our first view of the little peanut.

That is her dad's hand.  She weighed 2 pounds 10 ounces.  After some time, they both stabilized and the full magnitude of the situation began to unfold.  Besides being incredibly premature, Jilly has a cleft palate: something that her parents would have freaked out about under normal circumstances, but when placed in the context of this situation, seemed like something trivial.  She started to grow and this little family started their hospital commute ritual.  They live 45 minutes from the hospital.... the boys were not allowed in the NICU, and although they had a play room at the hospital, it still made for some rough times.  These pictures were taken on my trip to Pittsburgh in March.

I am including screen shots of many of the updates that we have received about Jilly and her struggles and care; because her parents have the most complete information about the situation, and at some point, I hope this post serves to all of our family as a reminder that #wecandohardthings #wegotthis #missjillybean #prayersforjilly.  I apologize for the lack of uniformity in the size of posts and texts.... I could investigate how to fix it, but I'm guessing that no one really cares THAT much.... it just bugs me visually, so I apologize if it bugs you too.

So this is about the time that Allie, Will and I headed back to Pittsburgh to play with the boys and help out a bit.  Will has missed Grayson since he moved and Allie and I have really missed Aunt Holli.  Here we are on the plane getting ready to fly.

While we were there, we did a lot of fun things.  We spent a lot of time playing outside and playing superheroes.  We went to the Carnegie Science Center..... we also went to dinner and rode the Duquesne Incline with Matt's friend Dave.  Love doing things the locals love.

On our last night in Pittsburgh, Allie and I took Holli out for a pedicure and dinner at Olive Garden.  It was a much needed break to pamper a mom who was burning the candle at both ends.  I was so glad we went.  Almost as soon as we got back home, things went nuts.

So here's where I come in.  Baby Jilly is now at Children's Hospital and we are all feeling so happy that she is being taken care of by doctors and staff who are truly experts in this field.  Dave and Holli have been so blessed by such wonderful medical care and local support.  Thank goodness David has a sympathetic employer.  By the time they left the hospital that Holli delivered in and transferred to Children's, Jilly's medical bills were upwards of $30,000.  She has now been at Children's for two months and there is a morbid curiosity about what the final tally will be.  The bottom line is that we as a family are incredibly grateful for the care and treatment that Jilly has been able to receive.  And what does any smarty pants do when they want to stay on peoples good side?  They suck up!  That's me, the queen of sucking up!  Okay, and I also wanted to try and turn this into an experience to teach my kids about finding ways to express gratitude for blessings and to try and look for ways to serve others.

At our local children's hospital (Primary Children's Medical Center, which is fantastic) they have lots of opportunities for families and groups to provide service; many small projects.  Well in Pittsburgh, they don't mess around.  Their donation page is filled with ways to donate like endowments, car donations, signing over stocks.... lots of stuff that wasn't going to work for us.  But, at the bottom of the list, there was a category for "in-kind donations."



So, we decided to sponsor a Toy & Gift Drive in honor of Jilly.  As a family, it was something we could do from Utah to "pay it forward."  Around this time, as it became evident that Jilly was going to be at Children's for a while, I made plans to fly back again to help out.  Now the plan included bringing gifts.  I was excited.  And immediately overwhelmed.  The response that I got from people in my life, people that don't know Dave & Holli, or Jilly..... but they knew me and my family and graciously donated toys, craft supplies, books and money.... things I could take back to thank the staff of the hospital for taking care of Jilly and to hopefully bless the lives of the families who would follow ours at this fantastic hospital.

Jilly was undergoing lots of tests and procedures to try and figure out what it was that was keeping her from gaining weight and was wreaking havoc on her breathing and eating.  The doctors did a sleep endoscopy and determined that she was "complicated."



So things moved forward, and all of the lovely people in my life kept the donations coming.   Jilly had her first cleft repair on Tuesday, April 12 and then was prepped for her jaw distraction on Friday the 15th.  You can read about what a jaw distraction surgery is, here.  Jaw Distraction Surgery.

Here is one of the pictures we got right after her surgery; you can see the little prongs "distractors" behind her ears.  These are turned by 1 mm one to two times a day to lengthen her jaw, which will help with her breathing and eating problems.    She is heavily sedated in this picture so that she will not try and herself.

Fast forward to Saturday, April 16 and life was really crappy here is Salt Lake.  My sister-in-law Shanna lost her father (extremely quickly and unexpectedly) and we spent our day trying to wrap our minds around that.  We headed to bed that night very sad and worried about our family: Shanna, my brother Ben and their kids, Leah and Andrew.  Losing Mike has left a huge hole in their family and I write this less than a month later.  So sad.  Well, on Sunday morning, as I got up to pee (big surprise) I found this on our family FB page....



So what did we do?  We prayed.  And we cried.  And we prayed some more.  So hard to see all the progress she had made wiped out in a few hours.  We thought that our worst fears were coming true.  Thankfully, we felt comfort knowing that Holli's parents were back there with them to help with the boys and to provide that reality check and pep talk that Dave and Holli needed.  As I have gotten older and become a parent myself, I have watched my parents "go soft" as grandparents.  It's a wonderful thing to see your parents love your kids and dote on them..... but sometimes you wonder, "have you completely forgotten what it is like to deal with all of this crap?"  And most of the time, I think they have, thankfully.  It's nice that the kids can be in cahoots with the grandparents.  But there are times, a few times I can count on one hand, that something will happen, and Grandma becomes Mom again.  She steps in and takes over and refuses to put up with your kids' crap and totally validates my role as a mother.  Parents provide a touch point for their children; always.  And knowing at the time, and hearing later on, that Pam and Paul were there to help lead their children through this hard time was truly a blessing for all of us.  I felt so grateful that they weren't alone in this.



We kept getting updates throughout the day on Sunday.  And we kept a prayer in our hearts all day long.



Okay, Pam and Paul are home on Tuesday, and Thursday morning I am scheduled to be on a plane.  With A LOT of stuff.

Matt and I were crisscrossing the country that day... he was flying home from Kansas City and I was flying to Pittsburgh.  We both had layovers in Minneapolis..... but they were 6 hours apart.  We took pictures that said "I was here."

A few hours later I was back in Pittsburgh and holding sweet little Jilly.

Friday, the boys and I hung out at home while Dave & Holli were at the hospital.  We also took advantage of the time to have an epic dinner at Chick-fil-A and then we took our donated funds, and we shopped.

So much fun; and despite the fact that it is hard for little guys to understand that they are not the recipients of all these toys, the boys did fantastic.

Saturday, April 23, was awesome.  Holli and I went to the hospital and visited Jilly.  And then that night, the Pierce's partied; some together, some apart.  Holli and I made tissue decorations for Jilly's room. Super fun and so exciting because it was practice for decorations for Erin's party this weekend.

But more than that, in similitude of our pedicure and dinner with Holli during our last trip, we arranged for David to play video games with some of the brothers on Xbox Live.  I ordered pizza for every house and we made arrangements for the kids to be out of the way for the night.  Here are some fun pics of that night.

It was some much needed "guy time."  And then the fun focus of the trip; delivering all of the toys that were donated or purchased for the hospital.  The boys donned their Superman shirts, because they are super duper.

After the photo op, we packed everything up and headed to the hospital.  I wish I had been able to take a picture of the staff members at the hospital..... they were amazed by the generosity of so many of you (as was I.)  So many of you who don't know Dave and Holli and yet, you were willing to help me bless the lives of so many.  When we arrived with the toys, the Child Life Specialist let the boys pick where they wanted the toys to go... that was easy; 8th floor playroom where they have spent so much time over the last two months.  It was so awesome to see the toys unloaded and stocked in the playroom.

With this mission completed, my trip is almost over.  All that was left was to fly home the next day.  Well, you know me; I can't make it easy.  On a whim (although I think I'm pretty awesome for thinking of it) I changed my flight home to depart from Pittsburgh to Baltimore; which is where Matt was flying into that day.  Jumped in the car and drove 4 1/2 hours to surprise my man!  And he was surprised.  Or more like stunned.  It was fun to sit and talk for an hour or so before he headed off to work and I headed back home to the kiddos.

And finally, I'm back home. But I have a great update.  Jilly has learned to rock the bottle.

Then Jilly had to have a swallow study to make sure that the milk was going where it was supposed to and that she didn't aspirate.  Well, here's the news.

And then, sweet Jilly got her distractors clipped. After 3-4 months, she'll go back in for a surgery to remove the hardware.

Feeding tube is out and Jilly is all smiles.  She is doing so well.  All she has to do is put on some weight and she is home free.  Holli has been at the hospital full-time since Friday and Grandma Pierce flew out Sunday to take care of the boys.  Holli's update the other day made me smile.

Heading to bed last night, prayer in my heart and fingers crossed, Holli sent this picture of Jilly in her car seat for the test.  She has to be able to sit in it for 12 hours without struggling to breathe.

Waiting to hear how the whole experience ended up last night.  I'm assuming it's good.  Hopefully she's headed home today.  How awesome will that be?  Holli has this whole three kids thing figured out.

So grateful for this little family.  Grateful that they have been taken care of and watched over by the Lord.  I am grateful for awesome friends and neighbors who love my people.  And I'm grateful that through all of this, my kids and I have learned a bit and have grown closer.  Life is good, and we are blessed.  Have faith!  It will be alright in the end.  One of my favorite thoughts is "If it's not alright, it's not the end."  Think about that!  Have a great day.

What Manner of Mom Ought Ye Be?

This last couple of weeks have been crazy.  The kids are crazy, our schedule is crazy and not surprisingly, life has decided to throw a couple of curve balls our way.  I would like to say that we've handled it well, but I'm not so sure.  The truth is, it's always easy to feel like we are lacking in some (or all) aspects of our lives.  I have found myself reflecting on the question that Christ posed to his followers in the Book of Mormon (3 Nephi 27:27 for those of you who'd like to look it up.)  "What manner of men ought ye to be."  The answer, he tells them, is to be "even as I am."

So, with that as my ultimate goal in mind, I changed the question to relate to motherhood.  More specifically, what kind of things will my kids take from the time they spend with me?  As I have thought about this, I have to say, I'm a little freaked out.  To give you some insight to the impetus of my thoughts, here is a rundown of the last couple of weeks.  (I don't share any of this because I am unique or special in any way, but just to provide some context.)

Taking into account school and the extracurricular activities of children, we spend a lot of time in the car going to: preschool, elementary school, junior high and high school.  Early morning swim practice, after school lacrosse practice.  And baseball (with it's early season mud and the promise of free food after every game.) We have taekwondo, piano lessons and playdates.  Erin is taking Drivers Ed, which requires us to travel to Layton multiple times.  Scouts and Young Women's. Taking Matt to and from the airport.  Picking up friends, driving to movies, driving to the store (oh so many trips to the store.)  Feeding the dogs, feeding the chickens, driving the carpool and going to the doctor.  We have had strep throat, head colds, migraines, diarrhea, bumps, bruises and sprains.  We try to go to the gym and take care of ourselves, although admittedly I am falling WAY DOWN in this area.  So these are pretty much the basics that you will find us dealing with at any given time.

Add to this the following:

A niece and her cute family in Pittsburgh who is struggling with some MAJOR medical issues.  How do I support them?  How do I let them know that I love them and I'm thinking of them?  Well, I visit for one.  And for two, I add the organization of a toy/gift drive to make some attempt at paying my gratitude forward.  They have excellent medical care and friends and neighbors that have taken them in and loved them when they are so far away from us.  So I ask for donations and am overwhelmed by the support I have received from so many of my friends and neighbors and family members.  Seriously, you all are awesome.  And then to wake up in the middle of the night on Saturday and find out that Jilly's lungs have collapsed and that her doctors have committed the situation to the Lord's hands.  Pulling my kids out of bed to pray and feeling that spirit in my home.  To feel like we're all united in a common purpose.

A sister-in-law who I have loved for 20 years who has to deal with the premature death of her dad.  A giant of a man (in body and spirit).  My kids know and love Grandpa Butler.  My heart is breaking for my brother's family; for the sadness and grief that they are experiencing.  I'm grateful for the Gospel, the Savior and the Plan of Salvation, but gosh dang it, this whole thing sucks!

Friends who are struggling in their marriages and watching them be brave and strong for their kids.  For the presence of a sweet little girl in my home every week who has an infectious laugh and loves to snuggle with me just like William.  For the fact that Jack feels like she is the little sister he wanted when Will was born but got a brother instead.  For her mom who is a great sounding board and who is always so willing to help me with anything I need.

For dear friends who have been missing from my daily life for far too long.  I want them back here and have more than likely inserted myself way too much in trying to get them to move by me.  Need a job?  Great, let's get you one!  Let's find a house and get the kids in school, just so I can finally scrapbook all day with my bestie (we won't scrapbook, but we could if we wanted to.)

Young Women's..... Oh how I love my calling in here.  And I hesitate to say too much for fear I'll jinx myself or because I know it always felt like the YW leaders were bragging about being in there when I wasn't.  Now, I know that we're not supposed to want positions in the Church, and that the Lord calls us to serve where he needs us, but I have wanted to be in YW since I turned 18 and got kicked out as a girl.  And it didn't happen..... and I felt terrible.  It felt like I was the last one being picked for a team at recess.  Why did no one want me to be there?  I know this may be insulting to those of you who have struggled for children, but that's the only thing I can think to compare it to.... I wanted to be there so bad, and it didn't matter what I did or said (to man or God) I didn't get to be there.  And then, last year, I got called to teach the Miamaids.  Oh my heck.... so excited!  And I have loved every minute of it.  I love the women I work with and the girls I get to be with.  I love preparing my lessons and going to activities, and I try not to talk about it too much because I feel like someone else could be where I was and I don't want to hurt their feelings.  But I love being in YW.  We had New Beginnings this week, which is kind of a big deal.  I didn't have to do a ton, but it got a little crazy on Wednesday night, I'm not going to lie.  That's Scouts for Jack too, so Will gets pulled along and we do a lot of shuffling sometimes.

We are planning an epic 16th birthday bash for Erin.  It's going to be huge and be at the church.  Which is good because all of the prep will probably render my home a disaster area.  I know right now that I am going overboard.  I am indulging every single fantasy that this girl has regarding her birthday.  I know that I'm more than likely going to regret it when I have to match or top it in two years with Allie.  I know that Matt will roll his eyes and wonder why and how we are doing all of this.  And I wonder why, if I know all of this, I am still doing it?  I've taken measurements, planned for decorations, commissioned art work, for heavens sake.  Oh how I hope its fun.  I hope people come and I hope that the enjoyment that Erin feels is enough to make Matt not be mad at me anymore.

Teacher Appreciation Week..... the PTA.  Oh, that PTA.  I am about maxed out with school this year.  My kids are missing classes and days more than they should.  Is Senioritis a thing for the parents of sophomores?  It has to be.  I am dying because I am just ready to be done with school.  Ready to not worry about homework, tardies, absences, kids hiding in the bathroom because they hate seminary, and all the other stuff that happens.  I am trying to plan Teacher Appreciation Week and I am mostly doing it alone because I hate to have to try and make someone do something on my terms.  What if they don't show up?  What if its not cute like it would have been if I did it?  All of these thoughts and more.... so, a weeks worth of activities need to be planned and prepared and it's the same week as Erin's birthday.... and the dreaded free food assignment for both boys' baseball teams.

Drivers Ed.... online and then driving with a weirdo.  Like, I should probably be concerned leaving my daughter with him, but she's gotta do it and this is where it's at.  I hate that something that should be seen as a privilege (driving her own car, having insurance and gas money) is seen as an entitlement.  And yet, I so need her to be driving.  I spend all my time in the car.  Okay, not all my time, because I'm not there now, but A LOT of time.... in my car.  It's a mess.

And kids, and their friends and movies and the mall and practices and happy meals and McDonald's play land because they love it.  And toys EVERY SINGLE TIME we go to Target.  And being fine with the fact that my 5-year-old colors all over himself.  And that I'd sometimes (well most times) rather go buy new pants for the kid instead of doing laundry.

And back to the sister-in-law.... who steps up to help her mom and her family and I think, I should make them food.  So Friday, I planned and shopped and prepped and cooked meals for 14 people (6 of those people live at my house and evidently they have to eat too.)  I am so grateful to Allie because she is such a good helper in the kitchen.  And there is more to make tomorrow.  My fridges (yes, you read that right, multiple fridges) are chock full of food. Thank goodness for daughters and a mom who are willing to jump in and help.

And to the niece and nephews in Pittsburgh.... hopping on a plane on Thursday to visit them.  To take them toys for the hospital and junk from Target; kids love junk from Target.  To give my sister-in-law (a true kindred spirit) a big hug and hopefully take the pressure off of them for a bit.  To arrange a virtual play date for my brother-in-law to play video games with his brothers who live here.  Mostly that's just because I think it would be weird to take him for a pedicure.

It's Monday.  Matt has left.  The kids are at school and for the first time in a week I am sitting on a made bed while I am typing.  I have dishes to do and laundry to sort.  I need to dust and vacuum and clean the bathrooms.  They are on the list.  Life is crazy and most of the time, these things are not a priority; but they probably should be because Matt would be happier, life would be smoother and I wouldn't feel bad about my mothering abilities.  But then, you wouldn't be reading this fantastic blog post.

So back to the original question, what manner of mom ought I to be?  Last Wednesday, as I was preparing for New Beginnings and had Will and Tessa and all the other Wednesday junk, I found myself buying cookies for the littles at Cutler's, a Diet Coke for Allie at Swig, Fiiz for Erin and ice cream from Dairy Queen for Jack.  All of those goodies were purchased and consumed in a two-hour window, on separate trips while I ran errands.  The kitchen was a mess, but we all got a treat.  When I got to YW that night, I made a joke about our treat runs that day and said, "I guess that tells you what kind of mom I am."  And my friend Camille said, "you are a mom that cares about people."

And that, my friends is it.  When my kids look back on life in my house I hope they remember this... that their mom loved people.  Especially HER people.  That I tried my very hardest to love those who needed it and that people that crossed my path felt special for a bit.  I want my kids to remember that although parties and presents aren't what's important, that they (Erin, Allie, Jack & William) deserve to be celebrated.  I want them to know that planning time to spend together as a family is a priority for me.... and while it's hard sometimes, we will never look back on our trips with regrets.  I hope my kids will remember that their mom would pretty much let them explore every possible interest and drive them wherever they need to go.  That we will ALWAYS be able to stop and get a Coke because that just makes life better. I want them to remember that holidays and traditions are fun, that festive decorations are a must and even when dad thinks that mom is over the top (which I'm guessing you can tell happens a lot at our house) that even dad is happy because the kids are happy.

I want my kids to know that I want to learn about lots of people and places and the things around me. I hope my kids will look at their environment and try to find something they can do to improve it; even if it's knowing enough to hug a cousin who's grandpa has just died and give them lessons on riding your hoverboard.  We watch Netflix in mom's bed and spend our time making posters and hand outs and decorations for parties.  We like fuzzy socks and enjoy colored water in our baths.  We're open to all kinds of music and mom will probably cave and order pizza if they ask.

There are so many things that I am bad at as a mom; or even just as a grown-up.  But I love my kids and I love my family and my friends.  I want my kids to know that.  I want my kids to know and remember and feel like I try to treat people the way that Jesus would treat people; even the stupid ones.  Sometimes I yell, and sometimes I cry and sometimes I just want a nap.  I want them to know and understand that life is a marathon and right now, it feels like I am at mile 19 and limping along..... but that I will keep on keepin' on.  Hopefully they will be better than me.  They will understand the need for balance better than I do.  I live in a world of extremes and all or nothing is sometimes hard on a family.  But, we love and feel big in our home and I guess that is what I hope they remember most of all.