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 toy 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. I remind him too. I told him that he must lean on me, tell me if he is hurting and how he feels. Suddenly he is in my lap in the cradle position (like when he nursed). He started to howl like a newborn and I rocked him with tears dripping off my chin and soaking his pajamas. I wept silently while he gasped and sobbed. I started to sing softly to him and he slowly calmed.
Soon only the chudders of a child's cry remained and I still rocked him while speaking softly. 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 cannot believe this amazing child came out of my body and is my son. He is truly a living, breathing miracle. Thank you. I love you little boy.
And now for a quick health and wealth update....
After being rejected by Toronto and BC once again in back to back losses 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. Jarvie, my mom, Meghan, Tracey, Heather and literally everyone I know has done everything we can to get this surgery done. I literally got on my hands and knees and begged the BC transplant surgeon to do the surgery. I told him quite simply that I don't want to be dying anymore, I want to be recovering or dead. One or the other. I asked him please set all of us free from this truly insane process. He responded by telling me that it was really his decision at the end of the day. It is one of the most difficult of his career. Keeps him up at night. He needs to feel in his gut that the time is right. Leave it with him until Thursday. We shot ourselves in the foot by going to Toronto because they said no too. Ugh... Thursday- no call so I initiate contact. No dice. See you 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 kidney’s 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 myself moving in videos when my son was first born and I am relieved to hear my laugh and see how easily I moved and danced. It hurts to wrap christmas presents now.
Well.... I've had enough. At the beginning of November I took a long hard look at the finances and the pit of debt we were falling into as we tried in vain to make ends meet. This and we were getting so much help from our friends and family. Unbearable! In November I attend another fundraiser despite my deep regret for needing more help. I felt the now familiar sting of humiliation as I see the familiar faces that fill the room to take from their means and gift our needs. These are people who struggle as much as I do! I know I would do the same for them and have, but now it is different because there is no end in sight. I feel hopeless.
Resolve: I have to stand on my own 2 feet again. The fact that I cannot pay my own bills has demoralized me. I could stomach it when I thought it was going to be a short term problem but now I must make my life work better. This hell could go on for another year and that`s just waiting for the surgery. I keep reminding myself that the surgery is only the beginning. The real battle for my life is the post-op recovery. I will pray every day and I will assume the salvation. My goal: self-sufficiency, creating a happy, stable as possible environment for the tot.
To this end- we met with the real-estate agent- can we sell? We talk to the mortgage broker- can we do anything there? Despite what should have been impassable barriers we were approved for re-financing and lowered our monthly expenses considerably. We also traded our minivan (after some fancy footwork) for a cheaper ride. And the hardest decision of all.... we re-evaluated the nanny. Having full time care was a decision we made because we thought surgery was imminent and at the time I was at high risk for going into a coma. And, my son was still a baby. Now, he is almost 3. He is seeing, listening, feeling, watching and learning so much every day. He has to spend too much time worrying about his mama so we decided it is best for him to be cared for outside the home.
We still have the nanny 1 time per week when she comes to clean and visit, but the Tot is now in pre-school 2 mornings and daycare for 3 full days per week. It is a wonderful structured happy and safe environment where he is well cared for and plays well. He has already made good friends there and comes home full of stories and all tired out. We are at just about the same speed by the time I pick him up. We are all adjusting but it feels better already. As luck would have it my mom and her husband arrived just as the nanny vacated so the sting of her leaving wasn’t as bad. My mom tells me she will likely stay for good this time. Again, I am grateful.
I would like to send a big shout out to God. Thank you! I don’t know who’s been granting all my wishes and prayers but they’ve been busy! Jarvie was assigned 2 more accounts this week!!!! He is concerned about being away from home more now with his increased workload but we are going to try and make it work. Bring on the frozen dinners and bring home the bacon baby! I'm so proud of you. "See ya with all my heart!"
I’m not sure yet but it seems like our financial ducks are finally lining up in that row they’ve been running away from! We haven’t dotted our I`s eyes or crossed our `T’s yet so still and perpetually praying...
Thank you all so much for your friendship, love and support of any and all kinds. I am eternally grateful. If we attain self sufficiency my prayers will have been answered but I know better than to count on it. Things change all the time when you are waiting for a transplant and living with a toddler!! I wish you all a happy healthy holiday season. Thanks for listening. xox
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