It frustrates me to this day that no amount of cuddles, kisses, wishes and feeding will change what Harrison has, but I hope it helps. I feel helpless on an almost daily basis to be unable to "make it right". I know though that Harrison needs me and in that sense, it feels like I am helping him.
I remember watching Steel Magnolias just after Harrison was diagnosed, Sally Field plays the mother role in this movie. When she is at her daughters funeral she suddenly screams in rage, "I want to know why?"
... That about sums it up for me.Why are the other 3 kids so healthy and my baby so sick, did I cause this to happen, why him and not me, why, why, why ? And I still ask why - even when I have all the answers. The truth is some days life's just not fair. So instead of screaming why?, I put on a smile and live for the day, as every day with Harrison is a blessing.
Life on the ward, what can you say. Because of Harrison's lack of immunity, my daily dressing includes gowning and masking. Not much can be expressed with the eyes and eyebrows alone. I can tell now though when someone smiles at me - just by the crease of the eyes, and the light that comes into someones eyes when they give you a smile.
Initially we had hot, sticky, plastic yellow gowns to be wearing, and masks that made it uncomfortable to breathe. If you've ever worn a face mask you'll understand, because they are the most unpleasant thing. It makes me very thankful to have tic tacs, cause it can get pretty woofy under the mask without them!!
One of the things I used to forget was to take the mask off when I walked out of the room. I often found myself walking down the hall to the parents room to grab a coffee and lunch, would smile at a nurse or another mum and would think, gosh they didn't smile back?? Then I'd realise - Oops - left the mask on again!
The other problem I found with that was that Harrison couldn't really see faces, and I often thought, how will he learn to smile if he can't see people smiling at him? So every so often, I would sneak the mask down to my chin - as per the photo, and smile at Harrison, just so he could see my face for a time. I also changed from the hot yellow gowns to surgical gowns, as the yellow ones made breastfeeding rather difficult.
I guess for me this hospitalisation has been the hardest thing to come to grips with - being away from home, at a hospital far away from family and friends and being in isolation room away from people in general. I have a new found appreciation of what it would be like to live life in a gold-fish bowl. People walking past the window staring into your room, tapping on the glass and pointing and talking about you, even though you can see they are there and talking!
It is also one of the lonliest places to be. Me and Harrison - mostly, with the exception of Scott and the odd Doctor or nurse coming in. Because we live so far away, I stay at the hospital with Harrison, 24 hours a day 7 days a week. Since our transfer to Westmead hospital I have not been home, and have only had one night where I didn't sleep on the ward.
That night the children and I stayed at Ronald McDonald House while mum slept in with Harrison. I can tell you it was not enough. One night with the kids and I was more homesick than ever. But I continued on, because I couldn't leave Harrison by himself, and felt guilty even leaving him in the room alone while I went to grab a bite to eat. Eventually we got a hostel room, where the kids could come and stay and play. But I still only got down there a few times a week for a hot shower and to change over clothes and do more washing. My mind never truly leaves Harrison's room though.
I am extremely grateful for the little things. My cousin Jenna came to the hospital daily for the first 2 weeks, bringing me in hot dinners every night and being so wonderful in general. It was Jenna who was here when I fell apart, and she just stood there and hugged me while I cried and cried, not knowing why. She bought me food, coffee, magazines and the DVD player. My sanity. I watched funny movies that made me forget, albeit temporarily, how sick Harrison was. I can never thank Jen enough for her help and love and support, because there were days that I felt I could no longer cope, and after her visits I always felt renewed. She still continues to bring me lovely soups, coffees and chocolates from the Starbucks down stairs!
Then there is the ward granny, Lyn. She comes a couple of times a week (since the beginning of July) and is trained to sit with kids who have cancer and had BMT. She allows me the space to get out - spend time with the kids, do food shopping and go to my room for a sleep catchup and clothes wash session. More recently I even ventured out to get a hair cut and colour - and I tell you the saying "a change is good as a holiday", so true!
Time seems to just vanish, and privacy is a non existent thing- refer to the Gold fish bowl bit!!. Even when you pull the curtains, someone still walks in.
I do love though - that even though it is forced, I have really had a wonderful time getting to know Harrison. It is like being a first time mum again. I love to read to him, sing to him - luckily I know the words to the Wiggles Big Red Car - as that has gotten me out of many a jam! It must have looked funny, me bouncing Harrison around the room while singing to him from behind the mask... I tended to forget people could see in through the glass!! Lol
And I love how close I am to him. I know when I am away from the room when he is waking up, I love the special us time we get with breastfeeding, and I was devastated when I was told I couldn't feed him anymore. Outwardly I smiled and said - "whatever is best for my baby" but inside I felt like screaming. Even now that I am breastfeeding him again, it still brings tears to my eyes.
Its like when the doctors came to me on that Monday morning, telling me he has ADA SCID and he'd need a bone marrow transplant to save his life. Being here on my own most of the time has meant I have had to be the first one to hear the bad news, to deal with the decisions and sign the forms for yet another General Anaesthetic and lumbar punch, to hold Harrison down for the umpteenth time that week for a blood test to be taken, and to settle him back to sleep when he is awoken by a nurse or doctor just as soon as he has fallen asleep.
Most of all I miss home, I miss my kids, I miss being able to feed Harrison and cuddle up to one of the kids on the lounge at the same time, to even just read them a book. But I am also so very truly thankful. We have amazing technology that allows me to Video call the kids and bid them goodnight, and computer access so that I could research every new term the doctors gave me and to email all of our family and friends with updates. I must have nearly driven the medical staff mad with my questions that arose from my research!! Also without the wonderful help and support and care at Westmead Children's Hospital, Harrison may not be here now, and that is the most important thing. For without him life would not be complete.
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