What SHOULD be Mac's 9th birthday...

I have not written on here in so long. For so many months this was my therapy. This allowed me to get out all of my emotions without having to actually vocalize them. As Mac’s 9th birthday approaches I have found myself back on here. I have so many emotions driving through me right now. I keep asking myself how one celebrates the birthday of an angel. How does one celebrate the life of one of the greatest teachers in your life when it was ripped away from you after only 7 short years? I should be spending the day baking a cake for him. I should be wrapping gifts and planning a party. Instead I find myself brought to my knees in pain and longing to just hold him one more time. To tell him how sorry I am for all the pain he had to endure. To tell him how much I miss him and love him. Tomorrow Billy, Liam and I will go to the cemetery to bring him a balloon and birthday candle. We will be forever grateful to have had him in our lives for even a short period of time. Then I will get SO angry because it was not enough. Birthdays are meant to celebrate life. We are so fortunate to be able to do that tomorrow night along with so many family and friends while raising money to honor Mac through a scholarship at St. Margaret School. As we journey through this 2nd year without Mac the reality of life without him is hitting me hard. I will never recover from his loss. I will never be able to give Liam the life he deserves because a carefree childhood for him is forever lost. I will never be the wife, mother aunt or friend I was before. Mac took a piece of my heart with him and I will never get it back. As you go through your day tomorrow please take a moment to whisper a happy birthday to Mac and ask him to send us all a little extra strength to get through it without him.

Memories of Mac

Every day this past year has been difficult without Mac. We have our memories of him, of his strength in the last 16 months of his life, and all of the special qualities that made him unique throughout his 7 years of life.

Mom, Dad and Liam have remained incredibly strong throughout the year. During holidays or other family gatherings, we talk about Mac, we laugh about things he used to do or say, and we know he is with us in a way...just not the way we'd want him to be.

As Mac's auntie and godmother, I would like to do something in remembrance and honor of him on the one-year anniversary of his passing, May 11. Could I ask for your help?

Please, by May 1, send stories, pictures, anything that you would like to share with the Connor family about Mac and how he touched your life. Whether you had the wonderful opportunity of spending time with Mac, or simply heard about him through family members and friends, please send a story.

Send all of these special memories to supermacstories@gmail.com and I'll make sure that Mom, Dad and Liam get each and every one. Please spread the word to others who may want to contribute to this remembrance book.

Thank you for your continued thoughts and prayers.

New Year

Today we said hello to the year 2014 and goodbye to 2013. As I look back on 2013 I see a year filled with more tears than I ever knew I had in me. I remember January 17, 2013 when we recognized the 1 year anniversary of Mac’s diagnosis. This was also the day that we knew meant he had lived halfway through the average lifespan of his diagnosis of 2 years. We learned his tumor was no longer responding to his treatment and scheduled his 3rd brain surgery. We also had the privilege of working with Make-A-Wish to go on our one and only trip with just the 4 of us to meet Robert Downey, Jr. His smiles from that trip will forever bring me peace. Knowing that he was able to meet the one person in the world he most wanted to fills my heart with joy and peace. We will forever be grateful to Robert Downey, Jr. and his whole team for moving so quickly and being so compassionate in fulfilling Mac’s dream. Never in my life would I have imagined starting a new year without one of my sons. Saying goodbye to Mac in 2013 was the single most devastating day of my life. I can still feel the pain in my heart as I think back to the very last kiss I was able to give him. The year of 2013 brought so many unwelcomed changes to our family. I pray for the strength and peace to keep going each day and new ways to honor Mac’s life in 2014. May you all find your new year filled with peace, love, health and happiness.

Christmas

Christmas has arrived. I had hoped that what little Christmas spirit I had a month ago would gradually increase. That did not happen. I find myself going through the motions of wrapping gifts and baking cookies when all I really want to do is crawl under my blankets and wake up when it is all over. Nothing is the same without Mac. By this time I should have heard him sing “Santa’s coming tonight tonight. Santa’s coming tonight” at least a hundred times. It seems when I lost by son I also lost the joy and innocence this holiday should bring with it. I somehow got through wrapping Liam’s gifts last night. It is heart wrenching to see only half the number of gifts then there should be. The realization that we no longer had to write names on the gifts to tell who’s was who is yet another reminder of how much we have lost. Billy found our video camera while cleaning out one of the closets. I sat and watched Mac from Christmases past open gifts. His enthusiasm was contagious. My heart breaks into tiny pieces every time the realization hits that I will never see that smiling face with the sparkle of mischief in his eye again. I am again reminded of how perfect our life was once and that we will never feel that happiness again because someone is always missing. This year there is nothing happy about this holiday or merry about our Christmas. I am just trying to get through it. January 17th will bring the 2 year anniversary of Mac’s diagnosis. Please this year take a minute to forget about all the stuff you could not get or all the messes and fighting your children do to just be grateful for them. There are so many families hurting this holiday because of the loss of a child. Pray for us all to be able to breath and put one foot in front of the other.

A letter to my son

My beloved son, Today marks 6 months since I last held you. It has been 6 months since I held your hand as you passed from this life to the next. Six months since I felt your last heartbeat. Six months since our family has been whole. Nothing is the same without you. Our house is void of genuine joy. Where you used to be now is just loss and pain. I wake up every morning and as I open my eyes and look through my doorway, down the hall to your empty bed the pain hits again and again. I am so afraid to forget your smell, the way you felt when you would wrap your arms around me and hug me as tight as you could, and the way the sparkle in your eye would always give you away when you were up to your mischievous ways. We are each dealing in our own ways but are far from getting through this journey with an ounce of the courage you showed in your short life. I would give anything to have you back. You were the best of our family and without you we are lost. Things that used to be so easy like eating and sleeping no longer come easily. Just getting through the day is a daunting task without you here with us. I am a broken shell of a person without your physical presence to teach us how to live each day letting only the truly important things matter. I feel like our family is now a triangle trying to fit into a square peg. Nothing feels right anymore. Please watch over us and guide us through this last leg of your journey. You will forever be one of the loves of my life. I hope you can feel my love where you are and know how very blessed I am to have been chosen to be your mom. You are one of my greatest accomplishments. “I will love your forever, as long as I’m living my baby you will be.” I love you! XOXO Mom

Halloween :(

It has been a very long time since my last post. I have been putting all of my energy into putting once foot in front of the other each day and trying to just make it through the day. Some moments are easier than others but with Halloween approaching it has brought on a new level of grief. Halloween was always Mac’s favorite holiday. He was driving force behind our choice of costumes and the excitement over decorating, getting dressed up and the sheer joy on his face on Halloween morning was one of the greatest memories I have of him. I still have a hard time believing I will never see that smile again. I will never spend hours with him looking at costumes online, while he changes his mind a hundred times until finally deciding on the perfect one. I hate that this year instead of buying him a costume with all of the accessories we are buying things to put around his stone at the cemetery. I am doing my best to get excited now that Liam has finally decided to dress up, but it is so difficult with a piece of my heart missing. The physical pain of missing him some days is overwhelming. Liam has not yet decided if he wants to go trick-or-treating, but in all honesty, I am not sure I have the strength to go with him if he decides he does. Liam has been incredible. He has been the heart of our family for the past 5 months. He misses his brother and is able to talk about him, but has not yet decided he wants to talk about the pain he is feeling with me. Our family is broken and we will never again be who we used to be. Halloween marks the beginning of our first holiday season with Mac. The pain and anxiety over the anticipation of Halloween, Thanksgiving, and Christmas without him is unbearable. I would give anything for just one more day with him to hold him, tell him how proud I am of him, and how much I love him.

Back to School

It has been a long time since I have posted on the blog. I am hoping that if I post some of my feelings over the past couple of weeks it will help to get me out of the funk I am in. I have been so emotional the past couple of weeks, breaking down into tears several times a day. It has been so hard to go the “back to school” shopping with only 1 supply list, one person to buy new sneakers for, and one person to talk up the new school year to. I came across the photo I had taken of the boys last year on their first day of school. They both looked so happy. I guess I always knew in the back of my mind that it was possible that it would be Mac’s last day of school, but had no idea of the heartbreak that would accompany the start of a new school year without him. Each day that brings us closer to Liam’s first day of school, I get deeper and deeper into this dark place I find myself. I am so exhausted at the end of every day. I wake up and for a split second and feel ok. Then it hits. Mac is gone. I spend the rest of the day trying to put the million pieces of my heart back together, knowing one piece will never be found, while at the same time trying to pretend that I can actually handle this life. I know that Mac is now out of pain and in a far more wonderful place than I could ever imagine, but I miss him so much and he took with him his smile, his laugh, and his mischievous grin that can never be replaced. I thought the hardest think I would ever have to do was to tell Mac that it was ok for him to go, that when the angels came for him to take him home to go. I am now finding that living without him his by far the most excruciatingly painful experience.

July

July has proven to be much more of a roller coaster of emotions than I ever expected. I knew the 4th of July would be difficult. It was the first major holiday without Mac. We got up early and I drove Liam and Billy to drop them off for the parade in town Liam was participating in. As soon as I drove away the tears started. I found myself kneeling at Mac’s grave sobbing loudly. This past Saturday we finally had the birthday party Liam has been patiently waiting for since last April. I was so busy getting ready for it I thought I was managing my emotions. That was until I found myself alone in my car running an errand. The tears came uncontrollably again. I have begun to recognize some of my triggers but know I will never know all of them. At a recent wedding I was having a great time. They started the father- daughter dance and suddenly I found myself on the verge of an anxiety attack. I went out to get some air knowing what came next. I would never be able to stand there and watch a mother –son dance without having a complete meltdown. We are on a new journey now, but much like Mac’s journey with cancer this one does not come with a roadmap either. Mac’s birthday is next Monday. He should be turning 8 years old. Instead of singing happy birthday and buying him presents we will be sending him balloons in heaven. I believe in my heart that Mac is in a better place. I know I will see him again and until that moment I have decided to get up every morning with 2 goals for myself for the day. The first is to get through the day so that at the end of it I can feel like Mac is looking down on me proud to say I am his mom. The second is to get through the day without Liam ever feeling for one minute like he is not enough. I get up each day and continue moving forward. Some days are easier than others, but I have no choice. I have 2 boys that need their mother. On July 22nd please try to take one moment to think of both Liam and Mac. Say a quiet happy birthday to Mac and ask that he watch over his brother as we struggle to get through the first birthday without him.

07/01/2013

It has been awhile since I have posted on here. The truth is I am not really sure what to write anymore now that I have no updates to post about Mac. We are adjusting to life without him, and with the start of July so many emotions have begun to flood through me. July is the month we have always taken our family vacation, Mac has always loved the 4th of July, and on the 22nd we will celebrate what would have been his 8th birthday. When I say I miss him terribly it does not begin to describe how much I ache to hug him, here is voice and kiss him while he rolls his eyes at me. I have accepted that my heart is broken and will be forever. I am so blessed to have so many amazing friends who allow be to talk about Mac while they listen and share their own stories. I am blessed to have Liam who has shown me what true faith is about. I will continue to talk to Mac each day; I just wish he were here to answer me. I know he is with me, watching out for me. I draw my strength from that knowledge, but there are days I would give anything to have one more moment with him. I believe there was a reason he was chosen to carry such a big burden on his little shoulders and I believe he is happy hanging out with his Papa now, because the truth is if I didn’t all of the pain we are feeling right now would be for nothing and that is just not something I could live with.

06/11/2013

I cannot believe a whole month has gone by since I last held and kissed my baby. When he was diagnosed I tried so hard to only cry when I was alone so as not to scare either of the boys. I know he is with me when I cry now. Especially during those times when I lay on his bed clutching his favorite Iron Man sweatshirt in one hand and the radiation mask he wore that is molded in the shape of his face in the other, crying so hard I lose my breath and feel sick to my stomach. I know he hears me when through sobs I cry out for help to have the strength to not only go on without him but live in a way he would be proud to say I am his mom. The last month seems so long I cannot imagine what a lifetime of missing him will feel like. I am so grateful to have such an amazing group of friends and family who would give up their Sunday to walk in his honor, donate in his memory, and most importantly not only allow me to keep talking about him but to have never stopped saying his name in front of me. For that I can never thank you enough and because of that I know I will get through this and come out the other side forever changed but not forever bitter. The world has continued to go on regardless of our grief but to have so many people surround us who stop and drop everything and allow their world to pause for a moment to hold me up when I am falling and hug me even when I push them away is a gift I can never repay. Thank you to all of you who have accepted the “new me” with open arms and have helped us to honor Mac over the last month and hopefully will continue to over the many years to come.

06/06/2013

Well, Tuesday will mark the 1 month of life without Mac. I miss him more and more with each passing moment. It truly has been a roller coaster of emotions. I go from fully functioning to being unable to breath from sobbing so hard to back to functioning in a matter of moments. Our house is so different without him here. I have been busy trying to make plans to keep Liam busy all summer so that the loss of his best friend and confidant is not apparent every moment of every day, but that is like putting a Band-Aid on a broken bone. We are walking in the Floating Hospital Harbor Walk on Sunday. I am overwhelmed by the number of people who have signed up to walk with us in honor of Mac. I am not quite sure how I will feel that day though; seeing so many of the people who have become integral parts of our lives throughout Mac’s treatment but we no longer see. Last year we walked as a family. Mac was right out of inpatient chemo, but we were together. This year I know Mac will be with us, but I miss his physical presence. I hope he sees how many people are there walking to honor him and the way he lived is life. I hope he sees how very proud I am to have been chosen to be his mom. Most importantly, I hope he knows that even with all the hurt and heartache I feel now, if given the choice to do it all over again, knowing how painful it would hurt in the end, I would say yes in a heartbeat because every moment with him was worth it. There is still time to join the Super Mac Attacks on Sunday or make a donation. 100% of all donations will go to the Pediatric Hematology/Oncology Clinic. The link is below: http://www.harborwalkrun.org/faf/search/searchTeamPart.asp?ievent=1059496&lis=1&kntae1059496=C84098F6D61B4371A5CAECC6624D8F03&team=5447416

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.

04/23/2013

I wanted to take a quick minute to thank everyone for the overwhelming support and kind words we have received over the last week. We will continue to need your help and support during the last days of Mac’s life and even more in the years to come when we need to learn how to live in a world without him. He has always been the final piece in the puzzle of our family. I will never understand why Mac was chosen to take this journey or how we got so blessed as to have him in our family. We seem to have gotten control over his seizures and a good schedule for his medications to keep him as comfortable as possible. He was able to open his eyes yesterday for a couple of minutes and played a few rounds of thumb wrestling. Liam has been very quiet this past week. We have talked with him about what is going on but I think that he is trying to be the rock of the family and be strong for us all. I hope he will be able to talk to someone soon about his feelings but don’t know how to get him there yet. His social worker is coming Thursday so she may be able to get him to open up. I will try to keep everyone updated as best I can, but I am physically and emotionally exhausted and find it takes all my strength just to get through each day. I am struggling to even understand the emotions of fear, pain, and anger I feel and am at a loss for words as to describe our current world.

Mac is still resting. He had another seizure this morning. According to the hospice nurse she estimates his time here on earth to be only a few more days to a week. We have talked with Liam, but I am not sure how much he really understands, because to be honest, as an adult I don’t understand how this happens. Never would I have ever dreamed that on my 37th birthday that I would be calling our priest to arrange the sacrament of Anointing of the Sick or calling a funeral home to make final arrangements for my 7 year old son. I don't even know how to wrap my mind around the knowledge that Mac will never turn 8. The decision to bring Mac home the single most difficult decision we have ever had to make. In my heart I believe it is the right thing for him. The last 2 weeks Mac has not been himself. He has been weak, tired and unstable on his feet. Even before that he started getting very upset at the thought of going to see the doctors. He had had enough. The MRI on Wednesday showed regrowth of the 3 tumors he had surgery on last month, the original tumor is still there, and at least 3 new tumors have started since last month. He is in and out of consciousness so we continue to be able to tell him how much we love him. We have decided that continuing to pump poison into him because we were not ready to let go yet would not be in his best interest. Thank you all for the overwhelming words and acts of support and comfort during the start of our most difficult days. We will continue to need them over the next years because soon our family will be broken in a way that can never be fixed.

Heavy heart

It is with a very heavy heart that I update all of you. Mac will be discharged tomorrow and be brought home on hospice. We are going to try to make his little time left as comfortable as possible. Please pray for peace for Mac and strength for all of us during this incredibly difficult time.

HARBOR WALK & RUN

We have started putting together a team of walkers and runners for the Tufts Medical Center 2013 Harbor Walk & Run. Our team name is the Super Mac Attacks. Anyone interested in donating can follow the link to our team page. Any and all support is greatly appreciated!

Super Mac Team Page