A fire’s been started that must press the keys to life. A storms been brewing and now Miss M has sent me a news post. A terrible twist of fate. A father of 3 young boys lost his life saving his brother in a live donor liver transplant surgery this August. Now the new liver is rejecting. It’s 1am and it’s my 36th birthday. I should be sleeping but it’s going to have to wait till I’ve got this out…. It’s my birthday and I had a live donor transplant 9 months ago. Miss M saved my life just in the nick of time as the blood discontinued its flow through the left side of my heart. I have been reborn. I am wife to my husband who has patiently waited for so long. I am mother to the 3 year old little boy to whom I devote my life. I am slowly resuming the roles and relationships I have missed so dearly. The odds were trying to tip against me but we fought back. I did not fight alone. Thank you. So- there’s cause for a bit of reflection today I guess. Meghan risked her life to save mine- a thought that’s never far from my mind but tonight it seems an even more eerie reality. I cannot imagine the pain the brother left behind must feel. I’m sure I couldn’t endure it. My heart and prayers are with him and all who this story has affected.
Where have I been for the past 3 years? It’s all a faded murky bog of grey except for the brightly colored figure that is my gorgeous Nate. Every second of his life is crystal clear. Despite the fog that surrounds everything else I can remember with astounding clarity the date he ate his first food, took his first steps, said his first words, where we went what we did the things he’s said- everything. It’s as if my mind was hungrily grabbing every moment as the last and locking it forever in my mind. My brain has skilfully edited the details of the horror away from my memory and I am a willing participant in this survival process. I don’t think I could bear to always carry it with me or remember. People tell me stories of things that happen and it sounds like someone else’s life. It is completely unfamiliar. One night I am grateful to have completely blacked out is the night before my surgery. My immediately family gathered for sushi around my hospital bed. We played on the bed for a little while and then it was time to say good-night. I am told Nate climbed on to my lap and we hugged tightly for a long time. I have heard them tell me of the loud sob that seemed to belong to 3 lifetimes of pain that came from the bottom of my soul and escaped out of my lips into the room. My brave son held me tighter, kissed me many times without shedding a tear and left my room silently. He didn’t say a word until he reached the pond in front of the hospital where he asked for a fistful of pennies which he threw “for mama”. I have had many heroes in my life but this little man is one of them.
I am ashamed to hear I was unable to contain my grief while I held him but I can only hope he felt the intensity of my love for him.
I do not want to wait for life to begin any longer but there are toddlers to live, jobs to do, houses to clean, laundry to fold, beds to make and food to cook. In other words you must move your torso to exist. And the great part is that I do exist now. I am NOT ILL ANY MORE!! But the problem is there are days where the pain of joining these severed muscles, tendons nerves leave me feeling attacked by a bear in the front and that large snails have coiled the muscles and entwined with the bones and ribs in my back. I want to eat holes in the walls and chew the pillows it hurts so much. But the pain goes away or is quite tolerable if I rest or do very little. But I can’t wait for myself anymore. Now is when I’m needed. My family is young, my life is young. So am at a standstill here and off to Transplant on Thursday to see what can be done.
As a tribute to Meghan, I want to enclose this piece from the past, just before January last year..... It shows how far we've come. What her sacrifice has meant for me and our family. I love you sweet angel. I'm so sorry Ryan died for his brother Chad doing what you did so selflessly and unwaiveringly for me as he did for him.
“A few weeks ago, my tot was having trouble falling asleep in his little bed. He insisted on sleeping with me in the spare room. I asked him if he was sick and he shook his head vigorously. I knew something was bothering him so I leaned him and kissed his rounded cheek. I reminded him that I’m his mommy and he can tell me anything. He whispered softly, “you are”. I repeated his words and asked him what he meant. He said it again. I repeated my question and snuggled him close to me. He whispered loudly, “You’re sick mama.” He had never said the words out loud before. I wasn’t ready to hear him say it now. Up till that moment I believed that he didn`t really know what was going on. I burst into tears despite my urgent desire to be in control of my emotions. It was his turn now. I couldn’t stop the waterfall steaming down my face. He jumped into my arms and held me silently. I could hear his breathing quickening, almost panting. I quieted and he told me he is so scared. He hears me throwing up. He’s afraid the doctors aren’t going to save me. They are taking too long mama. He wants to fix me with his tools. He loves me so much and he’s afraid that I am going to die. I gasp. I didn’t even know he knew that word. I feel like I have just listened to the confessions of a 15 year old and look at his tiny face and hands to remind myself that he is only 2 years old. What a brave little boy.
I tell him that mama was born with something broken inside of her tummy that needs to be fixed. Mama needs a new part. I tell him I won’t be sick forever. At least I can promise him that. I tell him that there is a special doctor who can fix me. A look of relief washes over his face and he smiles before pronouncing, “I will meet him mama. I want to meet the doctor who is going to fix you.” I can`t imagine the high and mighty Dr. S would be able to look at his little face and deny his request. In fact, our sweet tot has been to the transplant clinic with me only once. It was after his visit that they activated me on the liver transplant list.
I do believe that my son will see me well again. I believe I will dance and work and lift and climb and ride and run like I used to one day. I tell him this and he is happy. I feel like I just had a conversation with a 15 year old. I cannot believe this amazing child came out of my body and is my son. He is truly a living breathing miracle. Thank you.
After being rejected by Toronto and BC once again we were burnt out, done and depleted. We have been living this white knuckle ride as if each day could be my last. We cannot continue like this. I literally got on my hands and knees and begged the BC transplant team to do the surgery. Please set all of us free from this purgatory. No dice. We’ll see you again in January.
I am quite sick now. The disease is literally oozing and popping out of me and I am drowning in its force. I cannot believe that I will be rejected again when I return to the transplant clinic in January. My kidneys are bloated with backflow of blood (shunting) from the spleen. The pressure between the organs has resulted in ginormous varices in my torso which are now protruding from my skin and look like bloated worms after a rainstorm. I simply cannot get the upper hand on my pain or my nausea or my fatigue or the feeling that I have been poisoned. I am losing the memory of wellness now. I watch.....
That's enough of that. I don't feel like that anymore. No oozing and popping, no puking- none of that pergatory nothing. Phew! This is WAY better. Happy BIRTHDAY! All my birthdays from here on out are dedicated to my Angel and friend, Miss M. You know who you are. xox
Love and live,
Kidlet (Michelle) I just felt like honouring the sign off I would have given my dad who always called me Kidlet. I enjoyed that name. Maybe it will be my penname.