"I do everything a little differently because you were here;"

"Your short life has shaped my existence forever." 

-Jane Lloyd

One year ago today, my husband and I were driving back from grabbing a shower at the hotel and some food at Dunkin Donuts to make the hardest decision we have ever been faced with in our lives. As we drove down the roads that had become so familiar, we turned on 104.7 The Fish, looking for some sort of glimmer of hope. What we heard, instead, was the song "Even If" by Kutless. The words go like this:

"Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come"

 

Josh and I both looked at each other and knew that, despite what we desperately wanted, it was okay if the healing for Sawyer didn't come here on Earth but came instead in Heaven in the arms of Jesus. This wasn't an easy realization or one that we came to lightly. Over the course of the five days that Sawyer was on ECMO we desperately begged God to heal our baby and help him make a full recovery, but as the days went on we saw him slipping more and more away from getting better. After his initial open heart surgery his chest was cleaned out four more times, each time his condition slowly getting worse. Josh and I both knew that we were putting off the inevitable but had to hang on to some hope that Sawyer would get better. His EEG showed brain activity, but he was showing signs of sepsis, increasing blood loss, and continued seizures that they couldn't stop. Once we arrived back after hearing "Even If" we headed to speak with the doctors. They told us they had waited until the last moment to try a blood clotting medicine because if it clogged the machine, they would have to turn it off without giving us a choice. They had started it while we were gone, and it had done absolutely nothing for his blood loss. At this point we knew we were ready, well - as ready as we could be, to make the decision that it was time to take him off the machine and let him go. We had to sign some papers and we went to tell our families, which made things worse in a way. I hate seeing other people upset because it just makes my pain that much worse. We headed back around 8:30 to get the process started and hold our baby one last time.

 

I don't know how much of the night Sawyer passed away I have shared with those that have followed my blog and/or our friends, but here it goes. Josh and I went back to Sawyer's bedspace - 2121 - and had the curtains drawn around us, as every other parent was asked to leave the wing. Dr. Nicholson asked us if we were ready to proceed or if we would rather wait. We had already made up our mind and knew this was best for Sawyer because our poor boy had been struggling, to say the least, for the last 5 days and endured more in his 18 days than others do their entire lifetime. Sawyer was still connected to the ECMO machine and his chest was still open from the surgery (there was a covering over the opening to prevent infections, etc.). I sat in the same chair where I held him before surgery and they placed him in my arms. I remember several of the nurses on duty coming by and everyone that was assigned to work with Sawyer had tears in their eyes. Obviously I knew it was a depressing time, but the looks on their faces was a reminder of what a tragedy we were living. They let us hold him for a few minutes before clamping the machine. After they clamped the tubes, they all left. Everyone but Josh, myself, and Sawyer were left in the now curtain-surrounded bedspace that had been Sawyer's home. I'll never forget the look in Sawyer's eyes and Josh leaning over to say, "It's okay buddy, Jesus is ready and waiting for you and He is going to make everything better." At that moment I know Sawyer left us and went to be with Jesus. The came in to check his heartbeat and at 9:36 PM was when they knew he had left us. The left the room again, saying nothing. Josh and I held Sawyer for another 30 minutes before calling the doctors back in the room. We left to be with our families while they removed all of the tubes and wires and they told us it would be about 30 minutes. I haven't shared this picture yet, and I think what they say about a picture speaking 1000 words couldn't be more true. One of the nurses took this picture the night Sawyer passed away. I haven't looked at this picture in a while, but it sure does capture all of the emotional pain we felt that night, and still feel today.

 

As we sat in the waiting room with our families, I remembered that I didn't have any of Sawyer's outfits at the hospital or anything with me. My aunt and uncle ran the diaper bag down, and it had limited options. I chose one and we headed back to his bed space. It was so stark and empty without the machines. To see our precious baby laying there was a hard sight to stomach, but what a precious boy he was without all of those tubes and wires connected to his little body. Most people probably don't know, but our parents and siblings didn't get to hold Sawyer while he was alive. We tried to limit visitors and exposure to prevent infections or anything that would jeopardize his surgery. Looking back I regret that, but we were doing what was best for Sawyer and we had no idea how things would end. We gave Sawyer a bath, put clothes on him, and wrapped him in a little giraffe blanket. We wanted our families to have a chance to hold Sawyer before we left the hospital to plan his funeral. I scooped up my sweet boy and we followed the nurse down a never-ending hallway to a backroom while they went to go get our families. They told us we could stay and spend time with Sawyer as long as we wanted, but after our families had a chance to hold him and we were alone for about 30 minutes, we decided it was time to go. We knew that was just his body, and that Sawyer was now healed in Heaven. Unfortunately no amount of time spent with him would bring him back and we were both so exhausted. Josh's sister took this picture while we were all in the room together.

As emotional as this picture makes me, I am so glad she captured it. Most families are blessed with family pictures without their babies attached to machines and wires, but this is our only one, and our son has already passed away. Some people may have their own feelings of us spending time with Sawyer after he passed away, but I don't care. Unless you have been faced with this unimaginable tragedy I suggest you keep your opinions on how you would handle it to yourself. I am so thankful for our families support on that day and now a year later. Josh and I have had our ups and downs emotionally, but I am so thankful this has brought us together instead of tearing us apart. My expectations of life and how it 'should' be are so different than what is actually happening. Over the last year I have learned to trust God and His plans for my life, for our lives together. Losing Sawyer was not anything I would have EVER planned on, but I know that once I get to Heaven, God is going to turn over the messy strings and pieces of my life to reveal the beautiful masterpiece He was working to create through my life.

As time progresses my grief is easier to handle. I have found ways to deal with losing Sawyer that help my grief, rather than hiding in a hole or trying to avoid it altogether. I still wish I spent the last year raising a baby and sharing the same motherhood experience with my friends who have recently had children. I am still a mother, but I have spent the last year experience motherhood very differently. I have learned that it makes people uncomfortable and awkward, but through that I have been able to easily see those who have more than reached out to try and understand my differences and my hurt. I have spent the last year trying to keep my baby's memory alive, and I think I have done a pretty good job of continuing his legacy to bless other people. 

I drove to Egleston today with my mom to drop of the art supplies. Josh and I were completely blown away by the multitude of donations and were so excited to be able to bless other children and the hospital that took such good care of our baby while he was here. My emotional state was in overdrive this morning and I shed a good amount of tears. I wasn't sure why I thought going to Egleston today would be a good idea, but I had already told them I was coming so I had to go. I picked my mom up and headed that way. Once we got there they were also blown away by the amount of donations! They asked if I wanted to come inside and gave me the option to tour the CICU (where Sawyer spent his 18 days). Something made me say yes, and we headed upstairs. Unfortunately none of the nurses I knew were working except for one. I walked to where Sawyer was and suprisingly held it together. The space was empty, almost just like we left it. It brought back a flood of memories. Some good, some bad - but more good than bad because that is where we spent those 18 days with Sawyer. Here are some pictures of all of the art supplies. A huge huge HUGE heartfelt thank you to all who donated, these kids are going to have better days because of these art supplies!

*Some donations not pictured* Grand totals are below!

 

 The two little "people" in the front are Hope and Will. Steven, the donation coordinator, gave them to me for Rhory.

Steven, the donation coordinator, and the child life specialist at Egelston!

  Josh and I thought it would be neat to count all of the donations to give a "grand total". Here are the totals: 

Construction Paper - 43 (packs)

Markers - 53 (packs)

Crayons - 72 (in packs of 24)

Colored Pencils - 35 (packs)

Pencils - 9 (packs)

Glue Bottles - 10

Glue Sticks - 17 (packs)

Paint Brushes - 7 (packs)

Paint - 17 (packs)

Modeling Clay - 2 

Scissors - 22 pair

Chalk - 1 

Pencil Sharpeners - 4 (packs)

Erasers - 3 (packs)

Pens -1 pack

Doodle Pads/Note Pads - 17

Playdoh - 11 (packs)

Beads - 13 (packs)

Pipe Cleaners - 10 (packs)

Suncatcher Kits - 8 

Kids Art Set - 1 

Coloring Books - 8

Sticker Packs - 5

Bubbles - 9

Chalkboards - 4

& a lot of other miscellaneous items including felt, foam, and foam stickers!

Again, thank you ALL so much!

Being able to take these donations to Egleston made today easier to handle. Knowing we were paying it forward in Sawyer's honor was a blessing in itself. We have made it through a year, which means we are a year closer to being reunited with Sawyer. I know that some may think we have crossed the one year mark so surely life will be easier, but I don't think that is the case. I don't necessarily think the second year will be harder but I do think we have reached the point where most, not all, people think we will just be okay so they stop caring or start thinking we should just have all our crap together. I think once Rhory gets here it is going to add a whole new dimension to our grief levels. We are so appreciative of your prayers and ask that you continue praying for our family, Rhory, and the new dynamics we will take on in September as a family of four with one missing member.

"I will not cause pain without allowing something new to be born, says the Lord." Isaiah 66:9

 

It's been a year since we said see you later, Sawyer, but we loved you then, we love you now, and we will love you ALWAYS.

Here is another picture I haven't posted anywhere, but I think it is time. This picture truly captures Sawyer and all of his wonderful features without those pesky tubes. This was taken the day of his funeral. Oh my word, what a beautiful, beautiful baby.

Until next time,

Ashlyn