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The latest news about Harriet
5 minutes reading time (929 words)

Harriet Eleanor Gregory reaches her Milestone 5th Birthday

Harriet Eleanor Gregory reaches her Milestone 5th Birthday

If someone had told me 5 years ago, that I would be writing a blog to mark Harriet`s 5th Birthday, I would have said that it would not have been possible. All the consultant`s, doctors and nurses were telling us that Harriet had a life limiting disease and to make the most of our short time with her.

Harriet has been through so much in such a short space of time, the difficult choices we have had to make to keep Harriet alive and give her the best possible life we can, has been very difficult for us to deal with.

To see Harriet in pain on a daily basis is also extremely difficult to accept as a parent, as no child should ever, have to go through the sort of pain Harriet has to endure, over the last 5 years.

Harriet may be an extremely disabled little girl, but she is our little girl, we love her so much and would do anything to keep her safe and well. She is part of our family and although she may have allot of medical problems and disabilities, we try to do as much as we can as a family.

In the run up to Harriet`s 5th birthday, we wanted to go away for a few days, Harriet had been to Center Parcs in 2012 and seemed to really enjoy to peace and quiet.

We were able to book a short holiday at Center Parcs,  from May 23rd - 26th, which would lead into Harriet`s birthday.

It was always a scary thing to take Harriet anywhere, that did not have the same hospital type environment, that we had at home, so we basically had to take plan for every eventuality and would have to pack all Harriet`s life saving equipment.

The disabled lodge we stayed in had an electric bed for Harriet, we set up all the medical equipment around the bed and then tried to make the bed and the room look as close to Harriet`s bedroom at home as we could, as Harriet needed to feel settled.

The weather was not great at times, our other children were able to go out and enjoy some of the activities in the forest, but Harriet had to wait until the weather improved.

Harriet did make friends with one of the Swans at Center Parcs, who came to see her on her wedge every day, see the Youtube video below:

When the sun did finally come out, we took full advantage of this and went for walks with Harriet around Center Parcs. Harriet loved the trees and seemed to come to life, as the sun shone through the leaves, which made it all worthwhile.

Harriet struggles with to cope with too many people in one place and especially loud noises, so to be able to go from noise to peacefulness in a few seconds is very comforting for Harriet.

The lodge was also set next to the lake, which was again very quiet and peaceful, Harriet loved to watch the little animals come up to the windows in the lodge, she became very vocal and excited.

It was an extremely nice break for Harriet and all the family and would like to thank Rays of Sunshine, for helping us with this.

Today was May 26th 2014 - it was Harriet`s 5th Birthday, a day that none of us thought we would ever see, but none the less a day we were very thankful of.

When people think of children`s  birthdays, they instinctively think of parties and children waking up excited about opening present`s . Having other children this is what we would also think of, but this all changed when Harriet was born.

Harriet is unable to move her arms, her legs, swallow, smile and do all the things that normal children can do. She can`t tell us that she loves us, or that she is excited about anything that is happening to her, so we really have to think how best we can celebrate Harriet`s birthday with her.

The day started off with Lesley opening all Harriet`s present`s for her and then trying to interact with Harriet and the presents.

Harriet was tired and at times became quiet upset and just wanted to go and be somewhere quiet.

To see Harriet cry on her birthday, really upset me, but I had to stay strong for Harriet and try and make her enjoy, her special day.

The weather was still not great, but we wanted to try and do something nice for Harriet and decided to set up a gazebo, just outside Harriet`s bedroom. We hung lots of banners and balloons from the gazebo, had some chilled out music, together with soft lights and the bubble machine.

Harriet seemed to enjoy this at times, but still got upset when things became too much for her and therefore just let Harriet guide us as to what she wanted to do.

Trying to find a balance of doing something really nice for Harriet, but at the same time not pushing things too much, was always going to be hard to achieve.

I think at times Harriet was able to feel special in her own way and that she did enjoy the interaction with us as a family.

Harriet is a very special girl that is not only loved by me, but also by her mother Lesley, her brothers sisters and wider family and friends.

Harriet you have taught our family so much and we feel blessed to have you in our lives .

Jason

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