{EVERYTHING} is different

Going to the Pa’s Pumpkin patch each year has become a fun family tradition.  It was something that we all looked forward to. As soon as we would pull into the parking lot Bubba would start smiling and yelling, Regan would start plotting how all of the tickets would be used, and every year fun memories were made. So, I am sure that it comes as no surprise that the thought of going to the Pumpkin Patch this year brought with it some hard emotions. The thought of going without our Bubba was just unbearable. Each time we passed it Hubs and I would burst into tears.  Hubs told me that he just couldn’t do it this year; I agreed that it would be just too hard… maybe next year.   

One night Regan asked not if BUT when we were going to the Pumpkin Patch. I told her that I wasn’t sure if we would make it to the Pumpkin Patch this year. Then with a big sigh she said “EVERYTHING is different.” She then went on to point out that we had not taken out any of our fall decorations this year, that she was the only one in our family dressing up, and that we had not decorated our front porch in its normal spooky Halloween style.  

 

 Talk about a punch to the stomach. Her sweet observation made it clear that yes indeed, everything WAS different.

 

This got me thinking. There was a reason that we made these traditions, we wanted to make lasting memories that we would treasure forever with friends and family. There are so many wonderful memories in that simple little plot of land that tie back to fall and our little boy.  I don’t want to ever forget those wonderful smiles, him running away with his walker, ridding that darn train over and over with Regan, and making sure that he rode everything that his little body would let him.

 

So, I decided to muster up any grit that I had left in me and take her to the Pumpkin Patch. I had plenty of offers from friends to take her for me but this was something that her Mommy needed to do. I knew that I couldn’t do it alone so I enlisted the troops to come with me. Nana told me “I didn’t let you start down the road alone when Bubba was a baby... and I won’t let you now. “ I am so grateful for them. I didn’t want Regan to have to do this alone either. I knew that she was excited but I was worried it might be hard once we got there if she didn’t have a friend to play with.  

I put on my “mask” that I have mastered over the years, put up some walls, and tried to get myself mentally ready for a “simple” trip to the Pumpkin Patch.

From the second that we pulled in I knew it would be hard but I kept repeating a simple little prayer in my head “Dear God, please help me to endure my blessings.”

The amazing thing is that I did it! I climbed another huge mountain and managed to be what my daughter needed me to be for her. I managed to compartmentalize everything and be in the moment with Regan……

It was awesome to see her running around with her friend, smiling, and having fun!

Oh, how she loved riding the horse!!!

{When we go to Texas in Dec. I am hoping we get her out and really ride.}

There is something freeing and wonderful about riding a horse.

Games were played.....

animals fed.... 

and grandparents cuddled. ;-) 

It was HARD and so different but it was also wonderful to

 see Regan enjoying life and making new memories.

I was grateful that I was able to endure this blessing and enoy her sweet smile.

 

On another note:... just keeping it real over here.

Just in case you think that I have some kind of cold heart or super human strength

 I want you to know that yes I made it through the outing but at the end of the day......

it still hurt.

I learned to do hard things all of the time for my boy.

 I am now learning a differnt kind of hard for my girl.

 

"Dear God, give me the strength to endure my blessings."

Are you registered??

Today I had the pleasure of going to see a friend, a friend that I have not seen in a long time. I have not seen her since Bubba’s passing and I knew that the news of his passing hit her hard. I walked into her hospital room and the second she saw me she started to cry. I could see a range of emotions cross her face. I walked over and took her hand in mine and told her that it was OK. We sat and cried together about my boy and how much she loved him. She then went onto to tell me between strained breaths what was going on with her health.  She broke down as she told me that the Doctor had informed her that she might have to go on the heart transplant list. It broke my heart to see this young mother of two share her worries of not being here for her children. My heart broke as a friend knowing that there was nothing that I could do but hold her hand; tell her how much I love her, and that she was in my prayers.  I told her about my brave sweet Bubba and that even after death he blessed the life of many with his organ donations. I explained the great satisfaction and pride that Hubs and I felt knowing that our sweet boy was blessing the lives of others that needed the gift of these life sustaining organs so desperately.  I left her with a picture of my sweet boy and reassured her that he was watching over her, that he sent me to her. After more tears and hugs I said my good byes and made my way home. I have not been able to stop thinking about this friend all afternoon.

I have a question for you my family, friends, blog readers, and those of you that

I have never even met ……

ARE YOU A REGISTERED ORGAN DONOR????

And if not……

WHY NOT???

About a month after Bubba’s passing I was connected with the mother of Ruby Jane. In an email she had some questions for me after learning about our decision to donate Bubba’s organs. 

“Julie,
I am so deeply sorry that you have to be without your sweet Collin. I few friends sent me over to your blog that week. I was so heartbroken for you, reading your words, knowing in some degree, how your heart must be feeling. I couldn't help but smile to hear that you guys donated some of his organs. What a little hero he is! I hoped and prayed for a family like yours to make a choice like that to save Ruby's life. Was organ donation something your family had talked about before you guys were in that situation? I am so interested in when and why families make that choice, because I think it can help other families make that choice before something happens.”

 

So, I thought I would share with you all today why discussing and registering for organ donation ahead of time is so important.

Hubs and I discussed whether or not we would donate Bubba’s organs many times before his passing. We were not sure if any of them would even be viable but we both knew in our hearts that our sweet Bubba would want us to donate his organs if and when the day came. The conversations were awkward and uncomfortable. I mean really….Who wants to discuss these kind of things?? Here’s the thing y’all, we have not only had this hard discussion about Bubba but we have had it about ourselves and our sweet girl as well. This might seem crazy…. seeing as how the three of us are all healthy BUT we have seen all too often with friends that things can happen to us or our loved ones when we least expect it.  We wanted  want to feel prepared.

 

We thought we had an idea of how hard the minutes and hours after Bubba’s passing would be BUT what we had pictured couldn’t have ever prepared us for the reality. It was impossible to think clearly let alone make huge decisions like whether or not to donate Bubba’s organs. So, when the call came letting us know that there were indeed viable organs that could be donated we knew right away what we WANTED to do. I have to admit {and if you read THIS post then you know} that there was a bit of an emotional struggle not because we didn’t want to donate his organs but because we wanted vengeance against the doctor in question.  Here’s the thing…. It was a hard decision, no doubt about that, but since we had already discussed organ donation and what we thought Bubba would want us to do ahead of time  it made the decision  to not be angry that much easier.

 

We have been blessed to make several little friends that have been the recipients of life saving organ donations. It is wonderful to see their smiling faces as they take on the world with their second chance in life. It warms my heart to know that Bubba gave that gift to someone, to their family.

 

We made the decision AHEAD OF TIME to go a step further and donate parts of our boy for research at the National Institute of Health, where Bubba has been followed since he was three years old. We learned early on in our visits that the research being done would most likely not benefit our boy but would hopefully benefit another child one day in the future. So, we made the decision to donate to help further the research of Trichothiodystrophy.

 

Here is the reality … none of us are getting out of this world alive. It is inevitable that at one point in time we will all pass from this life to the next. God is in control of the how and when, even if we don’t understand or like that part of the deal. So, here is my question to you….. If you know that it is going to happen…

 Why not talk about it???

Why not make the decision ahead of time to be the Hero in someone else’s life?  

Why not discuss a way to bring some hope and peace into your life after the death of a child??

 

 Why not???

 

Yes, it is hard and uncomfortable BUT it can also be beautiful and peaceful, it can be empowering at a time when you feel completely powerless.

 

 

For more information on Organ donation please go HERE.

 

If you are a registered organ donor I want to hear about it!!!!

{Leave me a comment and tell me why you chose to register.}

 

If you know someone that was an organ donor please share.

 

If you have been blessed by an organ donation please share.

 

BY DOING SMALL ACTS OF KINDNESS WE CAN DO GREAT THINGS!!!!

 

{I miss him}

Tonight while we were looking at pictures in my phone

Regan simply said...

"I miss him."

I responded with "I know that he misses you too sweetie."

She then asked me "how do you know that??"

"becuase you were the best sister there has ever been... that's why."

{still} learning to be.........

I am often told…

“Oh, you look so good.”

I have an ongoing joke with my therapist and my girlfriends that when people say this I don’t know whether to respond with a thank you or an f you. I know that some people have an idea of what grief should look like; they think they have an idea of what they would do if they lost a child. Shoot, I thought I knew. I have always been the strong one; every time a new surgery or problem came up I was the one telling everyone that it would be ok and that we would get through it. So, I was surprised that when the day came I was the complete opposite. I was not strong. It was not anything like what I “thought” my grief would be. I have come to terms with Bubba’s passing and do truly believe in God’s plan for each of us. What I had a hard time with was how it happened. There had been many nights when I would go to check on my boy and watch his chest rise to make sure that he was breathing, only then to let out the breath that I had been holding while I waited. This night however when I watched his chest and did not see anything happening my world stopped.

At the hospital I had a panic attack and shortly after blacked out. I thought I didn’t remember much about that night. It all felt like such a haze. It didn’t take long for the events from that night to come rushing at me at night in the form of night terrors. Yes, my friends I was diagnosed with PTSD. For months now, while the world has seen me with my make up on and smile fixed to my face, I have been waking up or unable to sleep because of that night.

 I thought I didn’t remember much but then a dream would come… I was being held down on a gurney after waking up with oxygen over my face. I heard my sweet husband next to me pleading for me to come back to him… that he needed me. I heard voices talking about whether or not they needed to give me tranquilizers. I heard my Dad begging me to just breathe. In my dreams I could smell the room and hear all of the beeping. It all felt so real. I was living that night over and over again.  The dream of finding my sweet boy lying still came as well frequently.  Everything that I thought I didn’t remember came back in a flood, in the form of horrible dreams. Holding my baby kissing his head over and over and over again, climbing on the gurney to be with him, and then holding onto the bed as my sweet husband pulled me away when it was time to go.

It has been almost a week since these dreams have stopped visiting me at night. Learning to be again also means learning to deal with things that hurt. I have learned that running from those horrible feelings and memories from that night would only bring them back again each night. I have learned that by talking about it and how I feel has released me. It is ok to be sad, to be angry, or hurt about how it happened. It is ok to not fully understand why it happened the way that it did.  

In learning to be again I have learned that no matter what life puts in front of me at the end of the day it is ME that decides how I will handle it. It is ME that will hold onto the anger or release it. It is ME that can decide to be happy again. It is ME that misses my boy with each breath that I take, and that is OK. It is ME that decides to be a good mother for my daughter. It is ME that decides to hold on tight to my husband as he is my anchor. It is ME that decides whether today will be a good one or a bad one. It is ME that controls the muscles to my smile and whether or not I use them. It is ME that decides who I want to be as I am learning to be again.

So, when you see me around and you think to yourself… boy she looks good or she looks better than I would if I were her.  I want to remind you of something…  That morning I chose to wake up… I chose to get dressed and put on makeup… I chose to give you that smile…. I CHOSE TO BE ME.  

It is not easy, none of life challenges are, but at the end of the day I am the master of my ship and I CHOOSE to steer clear of choppy waters in hopes that one day maybe, just maybe when I wake up in the morning I won’t have to make the conscious choice… it will just be me again.

 

Need to be inspired???

I am in tears....

I am feeling blessed and overwhelmed by the love and service that TEAM BUBBA is showing.

Remember THIS post about the Team Bubba pillow case project for Miller Children's Hospital??

I thought that you might want to be inspired by Team Bubba in action.

Bubba's Poppie is going strong!!!

One of Bubba's "sick" friends {and brother and sister} paying it forward!

Bubba's classmate and her sister are showing their Team Bubba love!

Our wonderful Ms. Sherrie can't sew so she went shopping!!!!

Bubba's middle school friends showing their love!!!

Bubba's best buddy from school {oh, Bubba loved this boy!!!} showing his love for Bubba.

A Girl's Scout troop showing some Team Bubba love!!!

A girl's night out Team Bubba pillow case project night!!!!

Aunt Jen getting her sewing machine out and getting it done!!!

The YSA ward showing some love to Team Bubba!!

{with some help from Regan}

Nana and I have been sewing weekly!!

A friend and teacher from Bubba's first school showing support to Team Bubba!!!

 

So many sick children will be cheered up becuase of the kindness of these wonderful people!!!!

 

People that love and have been inspired by Bubba!

 

I have no doubt that Bubba is smiling down as he observes the power and insperation he was in so many lives and the need that they feel to pay it forward.

 

This Wed. Nana and I will be teaching the 8-11 year old girls from church how to sew pillow cases, no excuses ... if Regan can do it so can you! wink!!!

 

So, keep the pillow cases coming!!!

 

Oh, and the pictures too please!!!

 

We LOVE seeing Team Bubba in action!!!! 

 

By doing small acts of kindness we can do GREAT things!!!!

 

GO TEAM BUBBA!!!!!