Pediatric cancer research is terribly underfunded, and I am not exactly sure why.
And you should see some of the prices of these chemotherapies. It is out of this world.
It's not okay that I cannot sleep at night because I retrace every memory I had with my son, every conversation I had with a physician that ended in tears and the words "yes, this is very bad", "we may not cure him"....and every time I looked at him I was forced to imagine the way that he would leave this world and his family behind.
It is not okay that we had two options -- go home and recieve hospice care or treat him until his sweet little organs cannot handle it anymore.
That makes me sick.
It is not okay that I want him back more and more each day, because I just want to say that I'm sorry...and hold him for one last time.
And it's certainly not okay that for six weeks Logan and I both sat in the ICU rocking chair praying that we could simply hold our child. For six weeks all a mommy and daddy wanted in this whole world was for our son to be free from enough tubes so that we could wrap our loving arms around him.
But we never got to hold our sweet baby boy and watch him take his last breathe of air, or tell him it was going to be okay....that he would go to heaven where he would live forever and recieve everlasting love from Jesus.
And that makes it difficult for me to sleep.
And it fuels my desire for change.
So now what we are left with is not only an emptiness in our hearts because our sweet darling boy is gone....but also an emptiness that lingers as an aftereffect of the high we were on while fighting. When we were in the midst of the battle of Wesson's beast -- we had an indescribable purpose -- a fulfillment. We were able to enjoy and savor every last minute with our son because we knew that his chances of survival were minimal. I have 3,500 pictures from Wesson's 10 month journey waiting to be put in photo albums -- and each and every photo captured I can tell you exactly what was going on, how I felt at the moment....and why everyone in the picture was smiling.
I want to live with that appreciation and love for life each and every day.
We all should.
Life with Wesson was amazing. That battle was difficult - I can barely explain with words. Emotionally, physically and pyschologically defeating in every way possible. And yet life with Wesson was still better....
It was the best.
I will never forget the day I said "I can't do this anymore". It came out of my lips one time, and one time only -- and it was between Wesson's two transplants. There was about a two to three week period of which we kept him on an outpatient basis with the promise to the physician's that we could handle his 24 hour around the clock care. Out of pure desperation to have precious family time together.
This included up to 15 hours a day in the clinic recieving necessary medicines for sweet Wesson, labwork, physician visits, and about three to four bags worth of clothes, toys and medicines -- some that needed to be warm, some cold, some IV some oral, and some that needed to be protected from light, TPN bags, needles and tubing, ice packs, snacks and toys... and always extra clothing for Wesson, Logan and I in the common case of an extreme blowout -- which end it may come out of it would be difficult to predict. But that one day I had decided it was too much, only for a moment -- and I will never forget it.
We had just gotten back to the St. Jude Target House apartment from about a nine hour long clinic day and I was getting the bags all packed up for the next day, setting out medicines from the fridge and mentally trying to figure out if we had missed a dose of something or not. Logan was in the bathroom scrubbing Wesson's freshly puke-smeared car seat cover. Both boys were screaming -- Wesson because he had just relapsed and felt terrible...and Keegan because he needed attention from at least one of us. And in my moment of extreme weakness I threw my hands up, and said "Logan, I am done. I cannot do this, anymore" -- and with that I had my mental breakdown....tears and all.
And with that Logan raised his voice for the first and only time in our marriage of three years that I ever remember, and said "Kristi, look at him....look at Wesson! -- he is alive today and he's breathing."
And that's all I needed to hear.
And so now because I cannot have those moments back, even the toughest ones -- no matter how much I think I need it. I pray each night that I see my sweet boy in my dreams, and if I don't -- then I wait for tomorrow.
My sweet little angel.
We've already promised to do all that we can to make all that he had endured worth every minute of pain, suffering and heartache. We have to change something, and I know that we are only just people -- but it only takes one person to make a change.
So we pray for guidance as we start a new chapter, we pray for a successful incorporation process, and we pray for continued dreams of sweet sweet Wesson.
I am also currently in the proccess of trying to get Wesson's memorial slideshow up for the public to see. Hopefully I can get that done within the next couple of days for those who are interested, and could not make it to his Celebration of Life Service.