At the Francis H Burr Proton Centre I sit once more, back to the routine I have grown accustomed to over the past 4 weeks. It was a bittersweet visit last week with Declan, Lynkon and Josh. Amazing to see them but also a reminder of everything we have already lost. They arrived at around 2:30-3am on Wednesday, Josh said the drive was not to bad and the kids slept most of the way. Lynkon played shy when he first saw me which was a stab in the heart but I had prepare myself that this might happen. Declan on the other hand was an animal and it took quite a bit to get him to settle snuggled in bed with me for the rest of the night. I woke up at 6am to head over to Spaulding (only the second time I slept not in hospital beside Aiden so I wanted to be there before he woke). I got Aiden ready for his rehabilitation class at 7 am. After Aiden was off to his therapy I went back to the Home-Away-Boston Apartment to help get the other boys ready too. As soon as I opened the door Lynkon came right to me with arms up for a hug. Then the tears really fell, I scooped him up and my heart felt the same flutter as when he was born. Once the boys were ready we brought them over to Spaulding and the tears and smiles flowed! Aiden was so happy to see his little brothers. It was not long that Aiden had to go MGH for his Proton Radiation, so I took the boys back to the apartment and Josh went with Aiden. When they had returned that night we all went over again and the boys cuddled up on his bed and watched Scooby-Doo (Well Lynkon crawled all over them and got in their way of the TV but that is just like home).
The timing for the visit was great because it was the American Thanksgiving so Aiden did not have radiation Thursday or Friday AND he was allowed to go to the Apartment! I got him ready and after medication and instructions Aiden and I headed over around 9:30am. They sent a syringe with us so every hour we could push 60 cc of water through his G tube to help him stay hydrated so he could stay out longer. At this point he was not cleared for anything by mouth. This was a huge step for us as a family. Having Aiden out of the hospital but also a glimps into what it would look like when we got home. Having to feed through a feeding tube. Aiden is already a very sensitive kid and HATES when his tube is touched so we really had to explaine to him that if he did not let us give him water through it then he would have to go back to hospital. That he needed to work with us and help because we all just want to be together and this was good practice for when we get to go home and so that we can go home! The day went by pretty fast. We watched a movie, played “guns” (were declan put on a force field). The hardest times of the day revolved around meals/snacks. I never realized how much of our life revolves around food. Declan saying he is hungry so he has a sandwich, or a plate of dinner, or a candy but how do I tell him no even though I see it in Aidens face how much we wishes he could eat and how hard it is for him. We did give the kids freezes and Aiden was able to hold it and have some but even that was incredibly hard for him. I think of the hundred of freezes he had over the summer…. I had offered him a yogurt when the other kids were eating (which i had seen him eat no problem before) but he did not even want to try. Something that use to be so easy was so difficult now. Something he see’s his little brothers eating no problem but he is struggling to hold the spoon. I can not even begin to imagine how hard this is for him but I know it is. Josh took Aiden back to Spaulding around 6pm overall it was an amazing day with more laughs then tears.
Saturday morning we went to Target to pickup a couple items. Declan saw a gingerbread house and wanted to do it. I was a little skeptical at the time but I knew Aiden had good arm control with his right and thought it might be worth trying to put the candy on. Later that night we all went to the Family room, Declan super excited for the house and Aiden was full of smiles as well. I had Aiden open the packages and pour into cups which he did AWESOME! There was lots of smiles and joking around. You can see some of the photos below. What the photos do not show is Aiden breaking down and grabbing the house to smash it as the frustration built in him. The photos do not show me grabbing his arms to restrain him and yelling at him “just because you are frustrated you still can not break stuff!” The photos do not show me leaving the room so no one would see be breakdown crying.I finally composed myself and returned. Aiden had calmed down, Josh was distracting him with something else and I finished the house with Declan who was still beaming with excitement. And we were once again smiles and jokes, even if at times I felt like I could have won an academy award for acting happy as my mind tried to pull me into darkness.
Sunday we were given ticket to the Boston Bruins Game from Home-Away-Boston (Ronald McDonald Charity). It would be the first time Lynk and Declan would see a NHL game. We told Declan not to say we were going to the hockey game in front of Aiden and explained that it was hard because there was still alot of stuff Aiden can’t do now but he will be able to do again eventually. I told him that we don’t need to lie to Aiden but we don’t want to brag that we are doing something without him. I can not even imagine what is going on in Declan head. I question if I am doing this right, saying the right things… Trying to balance a normal life for Declan while sugar coating the world for Aiden it is extremely difficult. We told Aiden we would be gone for the afternoon and let the nurses know we would be gone for a couple hours. We took the shuttle to the rink and Declan beamed with excitement. Lynkon was so excited he fell asleep. We followed the crowd and found our seats, stopping at the shop to get Declan a foam bear head he picked out and Lynkon a Bruins Touque. The game was great as we traded off Declan and Lynkon sitting with each of us. I do not know why we needed four seats because the other two were seldom used. Saying I am not a big Hockey watcher could be the understatement of the year so it was comical me trying to explain to Declan what was going on and why penalties were being called but we had fun watching the puck and all cheered when “The Bear” team got a goal. We had drinks and candy and lots of fun.
Monday back to routine, the Boys and Josh would be heading home the next day. Josh did the routine with Aiden, 7am PT, 8am OT, 9am Speach then off to MGH for Proton not getting back to close to 4pm. A long day but consistent everyday. I hung out with the boys, went for a walk, played board game with Declan, chased Lynkon trying to wipe his snotty nose. I also took Declan for a haircut at a real Barber Shop then we went to the mall to see Santa. (I was trying to cram in as much as possible, I even gave Lynk a haircut myself because I could not not being there for his first cut which was desperately needed) This would be Lynkons first visit to Santa I could not imagine missing it. This was also difficult though… I asked the “elfs” if the boys could do separate photos and was told no (even though there was no one in-line behind us). The tears formed, as I tried to explaine my one son was in hospitals so I could not do a group shot without him. The tears streaming at this point as I started to argue with the elves who seemed clueless to what I was asking (yes I know I must have looked crazy and not being totally rational) Finally, Santa stepped in and said it was fine, I think for fear that I would start tramatizing the other mall children seeing a mother crying as kids visit Santa. I thanked him and Declan headed up to sit on his lap. Asking for Pie in the Face (but he wants to do cake so it is Cake in the face) Click, Click. Next little Lynkon dressed in his christmas sweater, first real photo with Santa. Click Click. I can’t fight the tears as I write this thinking of all the Sanata photos we have of Aiden. The tradition of a new photo ornament yearly of the boys on the big guys lap, together. The photos turned out great but once again do not show the tears and me arguing with elves in the middle of a busy mall. We retuned back to the apartment exhausted. Having the other boys here was such a different routine, tiring in a different way.
Aiden seemed to be very agitated that evening and still is (Friday), things we was doing before he does not want to try. Like eating or brushing his teeth I feel like we are at ground zero again. I have talked to the doctors and psychologists and it hard to say why. The last week consisted of losing all his hair, going off mood stabilizing drugs, seeing dad and brothers, and also into the fourth weeks of radiation and the effects that come with that. We did decided to put him back on mood stabilizer drugs as it was getting dangerous that he might hurt himself when the nurses are trying todo basic care. Today is Friday as I write this and I have had a couple more meetings with the doctors since the boys and Josh left but I will leave for another post. So now Aiden and I continue to check off the calendar – 2 weeks and the Boys and Dad will be back….then back to Canada!