Half a Year

*This first part might appear wonky...not sure what's going on with the formatting?*

6 months.  Half a year.  It’s crazy to sit here and type that Matt and I have been
without Connor for 6 months.  I think we’ve handled this time in our lives about as
well as we can. That being said, there are times where I question my own grieving
process.  Times where I wonder why I’m not crippled with grief to the point where
I can’t get out of bed. I remember initially after it happened wondering if I would
ever be back to being myself.  I pictured myself in meetings at work or just passing
people in the hallways and wondered what future Bonnie would look like. Would
she just be going through the motions? Would she smile and greet people?  Would
she joke around with others again? I certainly couldn't picture the latter two.
While I certainly have my moments of going through the motions, I have gone
back for the most part to the Bonnie I was. That of course comes with even more
questioning...how could someone who lost their child, this absolute ray of joy
and happiness in their life, just continue on?  It’s something I often wondered when
we had serious issues with Connor. How could the world keep moving on when
ours seemed to be in limbo?  

As I reflect on these last 6 months, I’ve learned a few things.

*Matt is my rock.  Doing this alone would be insufferable.  I will forever be grateful that we were there together when he passed away.  I will never forget waking up on August 28 before 6, bursting into tears, and having Matt there to hug me.  We joke often that we were an old married couple before we were an old married couple. I’m thankful to have this man in my life.  I am so sad that he has lost his “bro” and I know I can’t hold a candle to Connor. I am thankful that Connor had such an amazing, hands on dad.

*When a child dies, an autopsy will be required.  We felt we lost all parental rights of Connor after he passed as an autopsy was required.  This is a whole ‘nother post, and I won’t get too much into details, but this was very frustrating and emotionally traumatizing.  Again, perhaps another post for another day.

*Funerals for kids are cheap (relatively speaking).  The money makers for funeral homes are when older people pass.  You basically get everything at cost and the funeral home doesn’t profit off it.  This is random I know, but this is my blog and this is something that I learned.

*Matt and I are strong, in part because of Connor.  He was such a tough kid and showed us to keep smiling, even when things get tough.

*We will go through things in our own time.  Connor’s room remains mainly unchanged. Our laundry basket is full of his clean laundry.  We will start to slowly go through medical supplies to donate. I don’t know when I’ll be ready to go through these things and I know eventually we will when we’re ready.  We still have his cups with his med syringes out on the counter, as well as the formula recipe we had for him.  

*Our bodies have adjusted.  If Bonnie from a year ago heard me lament “I’m so tired,”she would look at me and make a sarcastic comment while rolling her eyes.  She’d be thinking to herself “Please….you don’t know tired.” However, I am tired and it’s amazing how quickly my body has forgotten and adapted to this new life of no middle of the night wake ups.

The caption for this picture referenced Connor being up for the day at 2:30. Yeah, past Bonnie would want to slap me...

*We have an amazing support system.  Anyone who came to the visitation, service, brought us meals, donated money, or thought of us in any way, we appreciate you so very much.

Of course, I’m sure as soon as I hit post on this, I’ll think of 8 other things I should have mentioned, but this is already longer than I thought it would be.  I hope you are able to channel your inner Connor at times to laugh and smile, even when times get tough.

Celebrating Connor's Life

I'm not really even sure how to start this.

This past week has been a whirlwind.  It has been a week since our sweet boy left us. 

While we knew the odds were stacked against him, and that this day would likely come, it didn't make it any easier. 

It's not easy that our identities as parents of Connor were stripped away and we were suddenly left childless.

It's not easy being home, thinking of all the tasks we normally do that are centered around Connor.  We've caught ourselves many times wandering aimlessly around the house, unsure of what to do with ourselves.  Even something as simple as me washing my hair or painting my nails were always centered around him.

It has been hard walking into our parents' houses without the excitement of Connor smiling and laughing in his wheelchair.  He loved getting carried up the steps into their houses.

That being said, we will get through this together and are extremely thankful for the friends and family who have supported us thus far.  We would not have eaten (that's for sure) and we wouldn't have had the nice distraction we have when we're around others, where we both talk about Connor and don't talk about Connor.

On Saturday, we celebrated Connor's life.  Matt and I eulogized our precious angel.  When asked a few months ago if I would be able to speak, I was adamant.  Absolutely not.  There was no way I could picture talking about Connor in front of others.  Anytime I mentioned it to Matt I broke down crying.  However, Matt and I channeled our inner Connor's strength and tried to do right by him.  I would hope he would be proud of us.

This is the video I created.  If you know me, you know I'm a picture fanatic, so I really had to limit myself to the 4 songs I chose.  I worked for probably 5-6 hours, and it was honestly a nice task to help keep my mind off of reality.

Fun fact: The picture in this thumbnail was from a fever. 

Connor, we were not deserving of you.  You were, and are, a precious angel and we are blessed to be called your parents.  We will take what you have taught us and try to make an impact in this world.  At the end, you required 2 blood transfusions (not counting the blood you received when doctors were desperately trying to save your life).  Your dad and I already have a blood donation date scheduled for the 27th of September.  Since we can't donate every month, we plan to do something positive and impactful on the 27th of each month in your honor.

Thank you Connor.  Thank you for teaching us what it means to stay positive, even in the darkest of times.  Thank you for reminding us to just relish in the music.  Thank you for blessing us with sheer joy you exhibited each and every day.  Thank you for being the blessing you are.  

While you are gone, you will certainly never be forgotten.  You will remain with us (and many others) in our hearts each and every day.  

We love you baby boy.

Happy 6th Birthday Connor!

It’s hard to believe it’s been a year since I’ve posted on here.  I’ve written (one) post since last year, but I never published it.  That seems to be common theme on this blog. Oh well. Life gets busy.  This is going to be a lengthy, reflective post. In fact, I may have even posted all of this before. Just a fair warning.

Each year, I reflect on this day as I imagine every parent does on their child’s birthday.  I can’t help but be met with very mixed emotions. While I imagine many, if not most, parents look back and think “wow, what a whirlwind that was” or “what a crazy time in our lives,” I sometimes struggle with my emotions on this day.

On the one hand, I have been blessed with this absolutely amazing kid.  On the other hand, February 17, 2013 and the weeks, and even months, that followed were a rollercoaster to say the least.  When I think back to these events, it truly reminds me of how far we’ve come.

The night my water broke, right before we left for the hospital. When I look at this, I can’t help but shake my head.  I wish I could go back and tell them to pack more clothes because you won’t be home for over 3 weeks.  I also wish I could congratulate myself on having literally zero expectations of how Connor’s birth would happen.  My laid back attitude was a saving grace at that time for sure.

Connor was born at 6:51 AM on Sunday, February 17, 2013. It took over 12 hours for us to post and update the Facebook world on his arrival. We were overwhelmed to say the least. This was our first picture as a family of 3.

I remember crying for the first time to my mom and sister while I was getting prepped for the c-section. I was worried about Connor. He'll be okay they assured me. Of course, none of us knew the hands he was dealt were not at all what we expected.

When he was first delivered, I cried again hearing him cry.

Then, the news and discoveries slowly started to surface.

Extremely low birth weight for a full term baby (4 lbs. 14 oz.)

Microcephaly

Abnormal/missing toes

Recessed chin

Clinodactyly

Those were all mentioned on day one of life. I remember being in the recovery room with my mom when Matt came in to tell me about his weight and toes. I don't remember when the others were mentioned.

The next day, Connor was transferred late morning to MUSC where all the specialists are.

It. Was. Hard.

Matt went to be with Connor and I was left alone pumping milk for a child I wasn't sure when I would see again.

But then, a miracle happened. I was being discharged. Less than 2 days from my c-section, really just a day and a half. I got discharged late afternoon and we went down to see Connor.

If you've ever been to MUSC, you might be familiar with the rotating doors to get into the main hospital. I was so sore and weak, I almost couldn't keep up with the pace of the doors y'all. Luckily I was provided a wheelchair which was my mode of transportation for the next few days when I went down there.

Our next big news came that night when we were told Connor had a fever. That it was very concerning for a child only 2 days old to have a fever. They would have to run tests to see what was going on. I remember them telling us this while I was pumping and realizing that my modesty was out the window. Literally all I cared about was Connor.

Due to his fever, Connor had to be somewhat quarantined (his first of many times).

The next day held an MRI for Connor (very late into the evening).

Our next big scare came on Wednesday when we came back from a walk to chaos where Connor's bed was. He had had a seizure we were told. Tonic clonic. Long. 5 minutes maybe? Transferring him to the NICU immediately.

I will never forget the haze we were both in as we walked with him there. Them sending us away while they got him settled and us walking back to where our parents were in the main hospital. The look of surprise on their faces as we got off the elevators (instead of coming from the back where Connor was) and then the look of despair in their faces when they saw us and heard the news. This was the first time I realized that we set the tone in how to deal with all things Connor.

 Connor was hooked up to his first of 2 EEG's he would have while in the NICU.

There were many scary moments in the NICU. The time where Matt asked about Connor's breathing issues, and the doctor told us we may have to make a decision about life. The time where we came in in the morning and were told he had turned almost blue.

But there were also good moments. Shortly after that doctor spoke to us during rounds, the neurologist talked us back from the ledge we were on. He told us he had seen cases much worse where parents didn't have to make that decision. I will never forget Dr. Kinsman shining a ray of hope on that dark day. Also, Connor was moved around frequently, which we were told was a good thing.

It would take 23 days after he was born for us all to go home. Up until that point we had been staying at our parents houses. When I say stay, I mean sleeping. We would get up, eat breakfast, and then spend the entire day at the hospital.

However, our story doesn't end there. Connor has been poked and prodded more in his 6 years than most people will be in their lifetime. He has had numerous EEG's (12 to date), has been hospitalized numerous times, etc.

But you know what? All of these mixed emotions I feel as I think to this one day really can't compare to the explosion of love I feel towards this kid. I mean, considering everything he's been through, he is one tough cookie.

I love his happy personality. I love the way he analyzes the next song to come on Toddler Radio to see if it meets his approval. I absolutely love the way he lights up and gets excited at his favorite songs and people. I love hearing him "talk" in his own way. I love this kid so very much.

I remember Matt saying when we were younger how it was kind of funny that we celebrate birthdays because it's like you're celebrating living through another year. I don't know why this conversation stuck with me. Maybe I knew I would need to hang on to this. With Connor, we literally are celebrating another year of life with him. So here's to another year with this amazing kid who reminds me each day what love means.

Happy 5th Birthday Connor!

Connor turned 5 today and it's a day to celebrate for sure!  Here are 5 amazing things about our sweet boy.

Pure Joy

As you've likely seen through our posts, Connor has this pure joy about him.  He is such a happy kid (and trust me, we couldn't always say that).  He is almost always happy.  And when he's not?  That's okay.  None of us are happy all the time, so I wouldn't expect him to be happy ALL THE TIME either.  

 

I love driving him home in the afternoons and when I think he's asleep hearing him just start cracking up laughing.  We always ask him what jokes he has.  

I love his joy.  It's contagious.

What He's Taught Us

Connor has given me many, many lessons these past five years:

1. It's nice to have expectations, but don't get too crushed if things don't pan out the way you want them to (I'm looking at you Halloween 2014).

2.  Plans are nice, but again, don't get too crushed if they don't work out.

3.  Keep me happy.  That means if I'm happy, you don't really need to mess with me...

4.  Live each day to your fullest.

5.  Play all the music (especially Pandora's Toddler Radio).

6.  Don't forget to smile and laugh.

7.  Even when I'm sad, sick, upset, not quite myself, etc.: I'll always come back to being your happy and sweet boy.

I know I could go on and on, but I'll stop there.

Strength He Exudes

I have to say, and I've said it many times before, Connor is my hero.  He is so stinkin' tough.  Way tougher than I am.  

I remember taking him for a routine eye appointment in November 2016 and his eye pressures being alarmingly high.  That was on a Thursday evening.  

They gave us a prescription and wanted us back in the office the next morning.  His eye pressures were checked and they wanted to see us again Monday morning.  

This video is from Monday night...the night before surgery.

On Tuesday, we had eye surgery.

Connor the next day getting his pressures checked again.

Why do I mention this surgery, when he's had other ones?  Did you watch that video?  How was Connor acting?  Connor's eye pressures were extremely high.  Abnormally high. Get this kid in for surgery as soon as we can high. 

As his doctor put it, if our eye pressures were that high, we would be absolutely miserable.  Connor?  Not at all.  

Another point to prove it (as if you didn't know already how tough he is).  The video below is the day of his feeding tube surgery.  Not only did he get his g-tube, he had the following done: 4 teeth pulled, Nissen fundoplication, bronchoscopy, and ear tubes.

I'm pretty sure I wouldn't be that peppy the night of a major surgery. 

I am in constant awe at how tough he is.

Progress Made
While there are clearly many things that Connor cannot do, and it's so easy to get bogged down in that thought process sometimes, he has really made some great strides.

He has grown (a lot).  Check out the photo change below!

His personality has come a long way.  I know most babies cry a lot, but it just seemed never ending sometimes with Connor.  It's so nice to have such a happy boy.

He has definite likes versus dislikes.  Particularly with music...there are some songs we have to give a 'thumbs down' to on Pandora and others that he loves. 

He recognizes voices and will smile and get super excited with certain ones (I'm looking at you NaNa).

He has a sense of his surroundings and knows what he wants.  He's okay being in his chair at school, but at home, he knows he has other options that he would prefer (like his mat or his crib), and he won't hesitate to fuss at us to take him out of his chair.

Connor moves all over his mat in his own little scooting method.

Personality
This is kind of a repeat of what I've already said, but he really has the best personality.  He knows exactly what he likes and what he doesn't (and he won't hesitate to let you know he doesn't like something). 

He's okay with trying new things, but he's perfectly content to just do what he normally does.  He tried out some kinetic sand and chocolate mousse for his birthday.  Check out the videos!

He loves being around people, noise, and chaos (I think he finds weekends with us to be quite boring).

We are so very blessed to have Connor in our lives and I am thankful for not only every year we have with him, but for each and every day.  Happy Birthday sweet boy.  We love you so very much.

Last Day of Being 4

Connor turns 5 tomorrow.  Let me preface this post by saying it's going to focus on some reflective, not so cheery things.  If you want positive and upbeat, visit us again tomorrow :)

That doesn't even seem possible. I know that's a cliche thing every parent says, but it just seems so crazy.

I will say that the first 2 years were crazy.  I'm talking cray.  Those years definitely felt like a year had passed.

But now?  Time really is flying.

I found myself reflecting on the way to work this morning about what a whirlwind it's been these past 5 years.  I found myself getting emotional too.  Not just because he's turning 5, but because of how utterly different these first few years have gone.  Here are 4 things I've thought about today (and many, many other days!)

Expectations
When I look at these pictures, I can't accurately describe how it makes me feel.

You see, these pictures were taken right was we headed out to the hospital shortly after my water broke.  We had no idea how much our lives would change in a few hours.  

We packed minimally for what we assumed would be a routine delivery. We had no idea it would be over 3 weeks before we brought our son home (and before we came back home).

We were nervous, excited, anxious...all of the thoughts new parents-to-be have.  

If you're new to our journey, we did not know Connor would be born with the issues we had.  We were told to expect a healthy 7-7.5 lb. baby boy.  Our world was rocked to its core the next morning.  

Those expectations of a routine labor and delivery?  Totally out the window.  If you had that experience, be grateful for it.  It is unbelievably difficult to leave the hospital without your child.  

It is painful to watch your son be loaded and sent off to a totally different hospital for their amazing services.  

It is challenging to juggle holding an infant with wires, probes, and monitors attached to his body.

Even though our experience was not at all how we expected, I am grateful for it.  I am grateful for the medical technology available that helped us and my son.  I am grateful we, and our parents, live so close to MUSC.  I am grateful to know that we've gotten through tough things before.

Twinge of Sadness

While I am a pretty positive and upbeat person (hello cheerleader Bonnie!), there are definitely times and moments where I can be sad.  There are obvious ones, like today when I reflect on how different things are than what I thought they would be, but there are also times where it hits out of nowhere.

Changing his sheets and seeing the sporty dogs.  Knowing that Connor's body currently won't let him do the things most boys his age do.

Realizing earlier this school year that if things were different, Connor would be at my school in CD.

Seeing things like 'babies don't keep,' 'please don't grow up,' etc.  I know that no parents mean these things and that all parents wish their little ones could stay little forever, but please embrace the life changes that are happening.  I'll get to this a little more with my last one...

Sorrow for his Struggles

He doesn't realize that he's got it way tougher than most kids.

He doesn't realize that other kids can do things he can't (for this, I am grateful.  I am so, so, so very grateful that he doesn't realize he's "different"...he just does his own Connor thing.)

He doesn't realize that most four 5 year olds are running, jumping, playing, reading, talking, eating, drinking, etc.  I could go on and on.

This sorrow is something that we feel as parents that he has to struggle.  But you know what's great?  Connor doesn't know it and he just tries his best every single day.   I have to say, and I'll probably say it again tomorrow, Connor is my hero.  He is so stinkin' tough.  Way tougher than I am.  

Timeline

As a parent of a kid with special needs, this is probably the toughest thing.  I won't go further into this because it's really very personal and emotional, but it's something I think of more often than I want to.

So, there you have it.  4 things I've thought of today on my sweet sweet boy's last day of being 4.  I am honored to be Connor's mom and grateful for the joy he provides us each and every day.

Stay tuned tomorrow for a much more upbeat and positive post! 

Feeding Tube Awareness Week 2018

Wow, it's crazy I haven't posted since early October of last year!  That's good news though :)

To finish out Feeding Tube Awareness Week, I wanted to write a post to cover some other loose ends about and related to Connor's feeding tube.

Kind of Feeding Tube
I just realized I've never discussed what kind of feeding tube Connor has.  Did you know there are different kinds?  Connor has a g-tube, which means his food goes straight into his stomach.  There are different kinds of g-tubes, but he has the AMT Mini One.

Supplies
Connor gets medical supplies shipped (to him!) every month.  We get a months worth of feeding pump bags and two connectors.  We also get a new g-tube button about every 3 months (unless one pops which has happened before).

Regrets
I've talked a lot about how much I love and appreciate Connor's feeding tube.  But I do have one regret about it: that we didn't get it sooner.  We were being pressured by several different doctors for a while about getting a feeding tube, but we were very reluctant to do it for several reasons:

• Connor enjoyed eating.  You could sense his body relax and it would calm him down.

• Getting a g-tube is surgery.  And a pretty major surgery.  Much more so than say ear tubes.  Don't get me wrong, I know that is a nerve wracking procedure for most parents, but it's also an in and out surgery.  This surgery would require a hospital stay for many days.
• Tummy time.  Connor is not able to sit up, crawl, stand, walk, etc.  His surgery was prior to him getting a wheelchair so he spent his days on the floor for the most part and he loved it (he still does).  Tummy time was HUGE for Connor and we were worried what effect having a g-tube might have on that.

I'm sure there were more concerns we had, but those were the major ones.  It took this for us to finally pull the trigger and decide he needed one:

 Getting a breathing tube put in at our pediatrician's office...crazy that Connor's breathing relied on the paramedic squeezing that bag.  I distinctly remember telling him through tears not to stop.

In the PICU

Just looking at these pictures brings back a flood of memories and a very, very scary time in our lives.  I remember talking crying to Matt on the phone in our pediatrician's office while they intubated Connor and Matt asking me if he was going to die.  It was awful.  I am getting emotional just going back to that time and it's something no parent wants to experience.

I bring this up because this is what it took.  I wish we hadn't waited for it to come to this point, but hindsight is 20/20.  The first night Connor was in the PICU we were talking to his nurse and the feeding tube came up.   I will never forget what she said about the parents she knew: "100% of parents don't regret it and most wish they had done it sooner."  She also told us that if he had had one, and had been getting the proper nutrients he needed, he likely would have never gotten that sick.  

We signed the paperwork and the surgeon even visited us while he was in the PICU to discuss it.  Connor needed to be well for the surgery to happen and it took SEVEN tries to finally get his surgery done.  The above pictures were taken in October.  Connor's surgery didn't happen until June.  It was crazy...he would get sick right around surgery time and we eventually had to quarantine him at home when I got done teaching for the school year to keep the surgery going.

*If you are interested in reading more about his surgery, I posted about it here  and here.

The Do's Don'ts of Feeding Tubes (with some of your questions answered!)

We know people are well meaning and/or curious when these comments are made, but I'm just putting it out there that they are more hurtful than we let on:

Do's:

If you are curious how it all works, ask!  We love educating people.  And if your kids are curious, that's okay.  It is different, but what a wonderful time to educate them that not everyone eats the same way.  I cringe when little kids ask their parents about Connor and they get shushed...(to be honest, if the roles were reversed I would probably be the same way so I am totally not judging anyone!). We would also love to show you how his pump works (the more people that know the better).

Offer to help if you're around.  See above!

Be supportive

Don'ts:

• When will he eat by mouth?  Probably never.  And that's okay.  We probably should be better at giving him tastes of things, but his aspiration issue is scary.
• He wants a bite of _________ or he wants to eat ________ too! (or anything else along those lines)  I assure you, he doesn't.  Connor is happy doing his Connor thing. 

If you read all of that, I am super impressed!  I've loved reading everyone's comments this week on my posts.  I think sometimes people just see the happy Connor pictures we post, but don't necessarily think of the medical things going on with him, so I've enjoyed spreading awareness during Feeding Tube Awareness Week.

Last thing:  Connor turns 5 next Saturday.  That's crazy!

Avondale 5K

We're less than 2 weeks out from the Avondale 5K and I thought I would do a quick blog post about why this event is so important.

I think it's easy to look at pictures like this one and wonder why I am constantly posting on Facebook about donating or joining our team.

But I think it's very easy to forget just where we've been.  This was Connor when he was younger.  He was pretty much either asleep or doing this.  He was not happy.  At all.  Like ever.  Except when Daddy came home from work.

Okay Bonnie, all babies cry.  So what.  We've also had numerous hospital visits, stays, ambulance rides, etc.  In fact, we're approaching the 3 year mark of this day:

This day forever changed our lives.  It was the day we finally admitted to ourselves that he needed a feeding tube.  He was getting sick so often, and on this day, his body just couldn't take it anymore.  He was intubated in the pediatrician's office and we were rushed down to MUSC.  We had been getting pressure for a while from doctors about getting a feeding tube, but this event sealed the deal.

Why does this matter and what does it have to do with the Avondale 5K?  

Well, simply put, the Avondale 5K benefits his daycare.  

A place that has a nurse on staff.  Think about that for a second...do you know of many daycares with a nurse on staff?  Nurse Susan is simply amazing.  

A place that already knows how to handle a kid with a feeding tube.  They know how to run his feeds, how to program his pump if it dies, and they can even put a new "button" in if the one he has pops (and they've had to do this at least twice now).  It was a seamless transition back to Webb after his surgery.

This picture would be the aftermath of our first attempt at changing his button out.  It was chaos to say the least!

If Connor's "button" comes out, it is crucial that a new one be placed ASAP as the stoma can close up quite quickly.  Most daycares would NOT be equipped to replace this, and it would be difficult to get it back in by the time one of us got there from work...

I had to add this video in here...this is right after his surgery 2 years ago when we learned how to give meds the first time.  It is hilarious watching how slow we do it.  Now we just push it right on through without any hesitation.

A place where his therapists see him every week.  We don't have to stress over getting him to therapy appointments.  They go to him (and he's had a couple of them for a looong time!)

A place that brings Santa to him.  There is no way he could've gone to visit a mall Santa when he was younger.  Waaaaaay too many germs.  Luckily, Connor gets to see Santa every year now!

They even made his wheelchair into the doghouse from Charlie Brown.  How perfect?!

A place that sends him on adventures, and pushes us to let him experience things we would never think to take him to (like the movies...which for the record, he fell asleep in every single one this summer).

The Charles Webb Center is a place that has been a lifesaver for us.  There is no doubt in my mind that without them and their amazing care, I would no longer be working.  They were this amazing find that saved us (and looking back, I don't even remember how we found out about them).  That fussy boy in the video earlier?  That's how he was for them too for a looooong time.  Now?  He LOVES being there (well, as long as they're playing music constantly for him).

Please, if you live locally, consider coming out for the Avondale 5K.  It's a fun race that is super family friendly (and you can walk too!).  We also greatly appreciate any donations you can make.  Just click the link below to register and/or donate.

Help Connor's Crew Raise Money for the Charles Webb Center