05/22/2013

I cannot believe it has already been a week since we said our final good bye to Mac. I miss him every day, think of him every minute, and love him every second of every day. I would give anything to just be able to hold him one more time. There are moments in the day when I feel motivated to continue the work he started of living every moment of every day seeing the joy and love in it. Then there are moments when I walk into his room and can still smell him and feel him. Every day for the split second when I wake up, before I remember the last month, I think he is still here with us. Then I become crippled with fear for a future without him and pain for what we have lost. I know he is flying around up in heaven in his Iron Man costume doing all of the things cancer robbed him of doing in the last 16 months of his life. I just wish I could hear him tell me he is happy and that the choices we made for him were the right ones. I never expected to feel all of the guilt that comes with child loss. Guilt over lost moments that phones and computers could have been put down to watch SpongeBob, guilt over not being able to pick myself up at times to show Liam we will be ok, and guilt over trying to put together a life without him. Mac is the first person I talk to every morning and the last person every night. He is the person who completed our family and showed us all the true meaning of being a hero. I miss him so much it is unbearable at times, but the time we had with him was a gift that I would not trade for anything in the world.

05/17/2013

I have started to write a new post many times over the last several days but after two or three sentences I find I cannot continue. I have nothing to say. There are no words to explain the feelings we are all going through here. Heartbroken doesn’t seem quite right because it almost implies that someday our hearts will be repaired. I feel like my heart has been shattered into a million pieces. Over the next several months and years I will work to gather up all the pieces and put them back together. The only problem is one of the pieces will be missing. My heart will never be the same. I will never be the same. My family will never be the same. Someday I hope to be able to think back at all the good times with Mac and look at his pictures without bursting into tears. That day is not today or anytime in the near future. I know it will take time but the thought of living so many moments without him is excruciating. So today I will try to pick myself up and get through the day that seems so long while pretending I am ok.

05/12/13

I want to thank you all for the many prayers send on our behalf. Mac passed away last night surrounded by love. I hope at some point this will bring me comfort. We will all now try to move on while thinking of Mac every day, missing him every hour and loving him every second. From this day forward I will try to take the many lessons of courage, strength and love that Mac has taught me to become a better person and fill the hollowness I now feel. We are devastated by the loss and ask that you continue to pray for our family.

05/11/2013

Thank you to all of you for the continued love and support. Mac took a turn for the worse on Wednesday night and his hydration was stopped. When the hospice nurse came on Thursday morning she advised us that all signs pointed to him passing at some point during the day. It is now Saturday and Mac is still fighting on. We have had a couple of incidences where we thought it was his time, but he came back to us both times. I have no idea what is keeping him here. I had been praying for peace for Mac when his time came but quickly learned there is nothing peaceful about watching your child die from cancer. With each passing moment it gets more and more difficult to see him in this state. His coloring has turned blue, he has sores all over his body from being in bed for so long, he has lost a lot of weight and although his body is here still fighting, Mac, our Mac, left us a while ago. I am trying to come to terms with the fact that I will never see him smile again, never hear his voice, never watch him roll his eyes at me. I would give anything to change places with him. I would give anything to have 1 more day before he got sick to spend together as a family before knowing all we know now. I am forever changed by the many lessons Mac has taught me and feel so privileged to have been chosen to be his mom. As Mother’s Day approaches think about all the moms who have lost their children and spend some quality time with the children in your life.

05/06/2013

Mac is still hanging on. I don’t know why I am continuously surprised by the sheer strength and determination of such a little person. We have had to significantly increase the number and dosage of his pain medications. Even the smallest of movements cause him to moan in pain. Today we had oxygen delivered since his numbers were down. The nurse advised me this would not prolong things, just keep him more comfortable. I thought when the decision to bring him home on hospice was made that it was the most difficult thing I had ever done. Now as I sit next to him, holding his hand, watching him struggle to breath, wither away to nothing and cry in pain I realize THIS is the hardest thing I have ever done. The scariest part of knowing that is the realization that this is NOTHING compared to having to learn to live without him here with us every day. Liam was the first person to teach me what unconditional love felt like. Mac was the one who taught me how to just enjoy every moment of life, regardless of who was watching. He would break out into a dance anywhere and everywhere, he wore costumes year round and he pushed every button in me at one point or another just because he knew he could. To see him so lifeless and unable to communicate is breaking my heart more and more with each day. I pray for a peaceful transition for him and the ability to make it through this devastating experience and come out the other side with the ability to still be a good mom for Liam.