Natalie and I have returned home from our respite stay in Lomdon, as has George from his respite stay at Hope House.
We have picked off exactly where we left off, infact less likely than 12 hours in and it's like we have never been away. Sleep is once again a distant memory, a precious commodity saved only for the privileged it seems. It really does highlight the importance of the Hospice respite stays.
George has had an especially difficult night, Natalie and I were able to share the responsibility of trying to calm him with the hope of us both getting to bed with a nice settled baby. Unfortunately we had to throw in the towel at 1am just to ensure each of us were afforded 3-4 hours in bed to try to get some
sleep without losing our days together.
Our day time hours are even more important now with the introduction of George's Lands End to John O'Groats challenge. We have so much to fit into a day. We are determined not to sit back and accept the specialists opinion of George's prognosis. We are not naive enough to think that George will achieve the same things that a healthy child will but we are adamant that we will make him the best version of himself that he can be.
Our milestones are significantly smaller and measured in inches, but each achievement is very special and we will cherish them.
It takes a lot of hard work to help George with his development, especially with the complexities of his conditions in addition to the usual baby issues.
Natalie and I have had to learn quickly how to manage and care for George, we often feel more like medical practitioners than parents, but George requires a certain amount of drugs to be administered throughout the day just to keep him comfortable. He is also connected to his feeding pump for pretty much the whole of the day due to his continous feeding regime. I refer to it as his ball and chain because it is so restricting. It hampers nappy changes, car journeys, physio sessions, hydrotherapy sessions infact pretty much everything.
This brings me back to exactly how busy our days with George are.
He starts his feed around 5am and his first drugs of the day are administered. This feed then continues until pretty much 11pm when he has his last drugs of the day.
We give him short breaks which allows us to try and conduct some of his therapies.
We complete a daily physio regime with him. We have sensory play offering him light and touch stimulants.
We try to provide him with at least 3 hydrotherapy sessions per week, which we are struggling with at the moment. The warm weather is making the water to hot. It's as high as 41 degrees some days even though the pool is only set to 35.
A by product of a hydrotherapy session ia that George requires a higher volume of water to ensure he remains hydrated. Guess what?, the ball and chain stays connected later into the night and we are trying to wean him.
Earlier in the month we decided to take on the virtual challenge of completing the trek from Lands End to John O'Groats. There were lots of challenges to chose from but this seemed the most relevant and challenging for us. Some of the "challenges" were as short as 50 miles, and we would probably complete it within a week.
As dog owners, walking has formed part of our daily routine for many years but now more than ever, it is proving essential to our mental health. We both suffer from good days and bad days, but we help each other through the tough times. Neither of us could imagine this journey without a wingman, and no matter how much you try to explain to people the only people that will truly understand our daily struggles are ourselves. Our lives have changed forever and it's difficult to accept at times. We will continue to adapt as we go. We have to, George is our little boy and we will continue to do our upmost for him.
Our little trip to London last week was the first time that I've felt truely human since becoming a Dad. We were able to enjoy simple things in life. A meal in a restaurant, a drink in a pub, sightseeing around our capital city. We had a lovely time and it was much needed but emotionally I felt the lowest and saddest that I have since becoming a Dad. What a crazy juxtaposition! I was living life again. Enjoying some much needed time free of responsibilities, but it highlighted just how difficult it is going to be to share certain experiences with George.
We can't wait to get out and about with him but there are so many things we hoped and planed to do that we won't be able to which is saddening.
George's challenge though, is forcing us to go that bit further with him when walking. As we tick off the miles virtual post cards are opened and we can talk to him about the various places that he arrives at on his virtual adventure. It is a positive experience, it is a challenge, and hopefully we can give a little back to Hope House. It will provide a lasting memory of something special that the 3 of us achieved together.
We didn't pay for a single meal last week in London as it was an all inclusive stay, but how strange does it feel to walk out of a restaurant having been fed Michelin quality food, waited on hand and foot throughout and not paid a single penny for the service? It doesn't feel right.
This is exactly how it feels with the hospice. George is provided with the best care possible and we are made to feel as if he is the only child there. The professionalism of the staff is amazing but they are still able humanise a difficult situation. They really do support the whole family. Their situational awareness enables them to be professional required, but also to have a laugh and a joke when the time is right. They make you feel so at ease and comfortable around them that they do feel like extended family. If I needed caring for, I would want it to be carried out by the Hope House staff.
The work that they carry out is absolutely priceless. You couldn't pay them enough in my eyes, but it actually is priceless to Natalie and I. We don't pay a penny.
The reality is that it is an expensive place to run and that the majority of the finances come from charitable donations and fundraising.
This is why it means so much to Natalie and I that we raise as much as we can with George's challenge. Our £1084 target wouldn't even cover the cost of 1 night of George's 5 night stay!
We are hoping that completing what is a big challenge for us will enable us to far surpass our target.
Yesterday we faced our first major challenge in my eyes. It wasn't physical, it was emotional. We went out on our walk as planned and stopped half way for a "pit stop". We had planned to stop at the pub for a drink and to carry out George's admin with regards to nappy, feeds and drugs. We were like a walking pharmacy.
We have only experienced a pub with George once, when he was much younger and fortunately it went well.
It was during this pit stop that I found it so hard to bite my lip and my head wanted to explode, Natalie was feeling much the same way.
We would both be first to admit that we were those people that would eyeball the young family with the baby getting on the plane, hoping and praying that they weren't sat next to us. We were young and child free and probably a little naive to the challenges parenting presents and the difficulties babies face growing up.
Shortly after arriving back from the bar, George had what we refer to as a George moment. Without experiencing it first hand it is difficult to explain, but a HIE baby's cry just hits differently. If you've seen one of his crying videos on his instagram you will have an idea.
Prior to George having his moment. Natalie had wheeled his buggy up to the table where we sat. It was adorned with hope house signage and she had proceeded to set up his feed under the watchful eye of the people on the table next to us.
Firstly it's not every day you see a buggy with signage attached to the front and for most people the sight of a baby being fed through an NG tube is alien, it certainly was for me until I found myself the other end of a syringe carrying out the feed.
The intrigue though soon turned into anger as glares were passed over the shoulder followed by the tilt of the head and a tut every time George screamed or cried.
I did feel uncomfortable that George was loud and it's not nice, but Natalie was trying her hardest to comfort him whilst I administered drugs under their watchful gaze. Believe me, Natalie and I don't want George to be screaming but we face endless hours of it daily and I'm sure George would much rather not being uncomfortable enough to be screaming.
I was more shocked that they were reluctant to show empathy due to the fact that they had 2 buggies with them, both children were much older that George and both were being babysat by a tablet.
We drank our drinks quick time and made our escape, we wanted to get George home and to comfort him the best we could.
For us to complete this challenge we are going to have to plan breaks inorder to carry out George's admin, he needs feed bottles replenishing, nappy changes and drugs administering, but do we need to rethink where we stop? I don't know? We don't want to disturb people and we made our move as soon as we practically could for everyone's sake. We have been dealt a really difficult hand and we are playing it the best we can, but maybe if you do see a crying child, just think, there could be more than meets the eye. Life is tough, but for some it's even tougher. Please show a little respect and empathy. Nobody, no matter how young or old really wants to be crying do they!
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