Hard to have them here

Since Noah was 12 weeks old I have been a member of an internet support group for hydranencephaly.  With over two hundred members on the group, there are many children each year who pass away, and with each child passing away I would cry for them, for their families and also for myself, wondering when it was going to be Noah.

Before Noah even passed away I always heard lots of advice about what it is going to be like to deal with grief, from other people on the group and also from other friends and family who have lost a loved one.  When you have a child with a life threatening condition, death is just something that you talk about because you wonder what it will be like for your child, how it will happen, when it will happen, and how you are going to deal with it yourself.

I had heard from others before about how hard it can be to have to sort through their things.   I've heard lots of advice such as 'take as much time as you need to' and I always thought that I would leave it for months, but as we woke up each day and saw Noah's things everywhere, the harder it was.   Aaron and I both talked about how we were keen to hold onto Noah's wheelchair and bed for a while because those things to us were a part of Noah.  His other equipment he used a lot, but we didn't feel the attachment to those things as much as his chair and bed.

The week of his funeral we decided that together Aaron and I wanted to start taking some of his equipment back, as we weren't sure how long Aaron was going to have off work at that time, and I didn't want to be doing it on my own. I grabbed his suction machine and thought I'd better give it a good clean before we took it back. I unzipped it and took it into the kitchen to give it a wash out and straight away I saw that there was a little bit of blood in the suction tubing.

That was it.   I just stood at the kitchen sink and sobbed and sobbed.  Just before we had taken him to hospital he was needing so much suctioning as he wasn't well, and when you do a lot of nasal suctioning he would sometimes get a blood nose.  I felt so sad seeing the blood in there knowing it was Noah's, and felt even worse tipping it down the sink as I knew that it was his blood and it was going, just like he had.  After a good cry, Aaron and I loaded up his equipment and headed to the hospital and the Community Equipment Scheme which is where we loaned all of his equipment from each year.

Kobe kept asking 'why we taking this Mum!?' and I would tell him that Noah didn't need it anymore to which he would ask 'why Mum!'.  I would then remind him that Noah died and is with Heavenly Father and doesn't need it anymore and he would be okay with that answer....for at least a minute.  Then it would start all over again....'why we taking this Mum!?'. 

We went to the nutrition department first to drop off his feeding pump and I wasn't anxious about actually dropping it off, but more anxious about saying the words 'my son passed away, so I don't need this anymore'.  As we walked in my heart was racing and I looked at the poor girl at the desk and said the words really quick, hoping it would make it easier to say.   She looked at me and said she was very sorry and then said 'Noah?' as she had obviously already heard. I told her it was him and she said she would sort it out for us.

We then went to the Community Equipment Scheme and I said the same thing to the lady there and she said 'Noah King? We were expecting you to come by sometime. I actually have a list of his things ready'.  I was glad that she already knew, but also kind of shocked that they were all prepared for us with a list and all, which she started ticking off as we brought the stuff in. I guess that's their job and they need to keep track of where their equipment is as it's worth thousands of dollars, but it's also hard to hear when your son has just passed away a couple of weeks before.

After taking back the bigger pieces of equipment, I decided I was ready to start going through all his other things that we used every day such as nappies, blueys, mouth swabs, syringes, suction tubing, suction catheters, and gauze. A third of our hallway cupboard was taken up with Noah's supplies, so it took half the day to go through it all and work out who we could give what to.

I actually found it a lot harder going through all of his supplies, rather than the bigger pieces of equipment as it was things we used all day, every day.   They were also things we had to order regularly and pay for ourselves.  All of the supplies we used regularly cost us a lot of money every month.  During the last 6 months or so I had finally found the courage and energy to speak up and talk to the politicians about how difficult it was to have to buy all of these things all the time, especially without any financial assistance to do so.

That is a whole other blog post and story and one day I may go more into it, but a lot had happened in the six months before Noah passed away, and I finally felt like people (politicians) were starting to listen to me about how terrible the whole system was.  I feel sad that I had finally had the courage to speak up and it is too late for us, but I hope to continue speaking up until the system is changed, so that families who care for those with disabilities aren't disadvantaged because of the choices they make to care for their own children.

Kobe and I loaded all of Noah's supplies into the car and went and dropped them off at two of Noah's friends houses - Elly and Charlotte.   While driving there I felt sad knowing that Noah wasn't able to use these things anymore, but then as I was driving I started to think about how good it also is that he doesn't have to use it anymore.  He is no longer in his body full of restrictions and I'm sure he is loving that after ten years.   I also thought about how happy Noah would be that we were able to share his things with his friends.  Noah had a friend Courtney who we had met in hospital many years ago, and after she passed away her grandparents gave Noah all of her equipment and supplies. I will never forget that day - how sad we were that Courtney was no longer here, but how grateful we were that they would want to give Noah all of her things.   When we dropped off Noah's supplies, Elly's Mum was the same - sad that we didn't get to use them ourselves, but also very grateful that we could share them. We joked how it was like Christmas as it's always very exciting getting a heap of supplies (it's the 'small' things that excite parents of children with disabilities in more ways than one :)

It probably took another week before Aaron said that he was finding it hard having Noah's bed and wheelchair in the house.  We first of all felt like wanted to hold onto them for at least a few months, but each day it got harder and harder seeing them in the house, knowing Noah wasn't here to use them.  Noah's wheelchair used to live in the hallway, but after we arrived home from Hobart the day after he passed away, we put it in the garage.  Every time we went into the garage it was sitting right there (our laundry is in the garage so I was out there many times a day).


I think the worst thing was seeing the hospital label sticker that was still on it saying 'ICU'.  When he went into Emergency and then up to theatre to be put on the ventilator, they left his wheelchair in Emergency and labelled it so they knew he had been transferred up to ICU.  The whole week we were in Hobart his chair was sitting empty in our van as we had decided to leave it in the van and take it to Hobart, hoping that he would eventually be well enough to spend some time sitting up in it at hospital at least, and also of course that he would get well and come home in it.

Aaron and I talked about it for a few days, and then decided we felt like it was time to take his wheelchair back as well.  Kobe and I took it to St Giles and although I felt sad dropping it off, it wasn't as hard as I thought it would be. 

They promised to take off his Hawthorn back for us, so that we can keep it :)

Seeing Noah's empty bed each night was really hard, especially as his bed is in our bedroom, so we decided that it would probably be easier if we also sorted it out.  We packed it up and took it around to the Weeden's for Charlotte to keep.   We are so happy that she gets to use it.  It was actually Courtney's bed and we have had it for about 6 years and loved it.  It is an automatic hospital bed and it was wonderful to be able to raise or lower his head during the night if we needed to with the touch of a button.

We felt a big burden had been lifted once we finished sorting out all of his things and returning them or dropping them off places.  People have been asking if it's hard not seeing his things around, but I think it was actually harder having them here without him.   Those things helped Noah's life, but they weren't his life.  His life was with us and we will forever have photos, videos, blog posts (thank goodness I started all those years ago!), all of his special things and memories that we will never get rid of.