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.