Well, we were just finishing up with half term and it has been a very exhausting but fun packed week with my family. I visited my family in Cardiff for a few says as my father is very unwell and is slowly deteriorating. This is a very difficult time for my family. However, I am trying to visit him often as I can as making the most of time is important in life. I do not like wasting this precious time that o have been gifted with because of a lovely donor and their family.
We visited a local farm with the children which was lovely. Although when I walk too much my sciatic pain gets quite difficult to manage. However it was amazing to see my son so taken by animals. He fed the sheep’s and goat and just really enjoyed himself but my daughter wasn't so pleased. She was too preoccupied about visiting the gift shop! She definitely is my daughter because I love souvenir shops even if it is just visiting the local farm.
We also managed a trip to Cheshire and visited the ice cream farm there. I really loved it. If you haven’t been, you really should visit this place with children. It is like a little hidden treasure and the children will love it. It has a beautiful play area which is free, a huge ice cream parlour with so many flavours, you can also pay for other rides like the JCB diggers and golfing. The weather was perfect and it was amazing.
We celebrated my husband's birthday. My daughter had instructed me to make a cheese cake for her dad whilst she was at school. I made the cake with my son and then my daughter helped me decorate it.
We also celebrated my niece’s birthday and that meant more cake and more fun! Aleena loves my niece and is always excited to spend time with her older cousins.
Finally, today we had family friends over and the children enjoyed themselves playing in the garden and sharing their toys. I had a lovely time catching up with friends and it was a lovely end to our half term.
These are the simple things I missed last year when I was unwell. You appreciate all these little things in life that are worth celebrating. It is important to take time out and appreciate all people in our lives who help us and support us in our happy times and sad times. It is hard not to fall into sadness when we go through huge tests in our lives and believe me, I still have bad times. However overall, I try to enjoy my time with family and especially my in laws as they live closer to me so I see them more often. I’m glad we always have a good time and that we always make time to laugh and appreciate one another.
I had my clinic a few weeks ago and that went well too. I’m still on quite high doses of anti rejection and I’m still going through quite a few strange side effects which I’m hoping one day will leave me. It isn’t so bad as I’m getting used to it but isn’t it amazing how long it takes to recover from a transplant? It is hard to believe that even after a whole year, my surgical wound still hurts a lot. I feel a lot of tingly sensations as the nerves are slowly healing. I still cannot get up from the lying down position to upright like I used to, I need to hold onto something for support which makes it a little less painless. Apart from that, I’m doing good. I think sometimes I overdo everything as it feels exciting that I can do more and more. Some days though, I still find it hard to get out of bed and face the day as I’m so exhausted but it is difficult to rest!
I tried potty training my son but that was an epic fail! Instead of potty training him, I hurt my back by carrying him and that pain lasted for a month. I’m hoping to try again soon and hopefully this time I’ll be successful!
Life can be tough and not many people will know how hard it is for me. Lately, I’ve been physically finding it difficult and tiring to look after my daughter who is a special needs child. She’s over 8 years and we have to look after all her personal needs. We are waiting on some news from the occupational therapist to come and give us some tips on how to bathe her easily without injuring our backs. I have to look after my health as well as my daughter’s and it is hard.
It annoys me when people call me lazy when I have to hand over some of the care to my husband. People really think once you’ve had a transplant that you’ve had this miraculous cure and that physically you are able to do everything and anything. For a healthy parent it is a challenge to look after their child that has disabilities so can you imagine how hard this is for me? Me and my daughter have found ways to make life safer and easier for us and sometimes I really have to hand over the care to my husband because if I overdo it, I will only end up making life harder for everyone.
My daughter does make it worth it though as she is the most sociable, friendly and caring little child that I’ve ever come across. She has come on leaps and bounds and we are hoping this summer we can try and get her out of night time nappies. This will mean though, lots of night time trips to the bathroom half way through the night as she cannot get herself onto the loo. But it will be worth it! She’s ready to give it a try and so am I!
I hope the weather keeps on staying this way and we get to enjoy more days out and enjoy experiencing fun times with the children. Enjoy looking at the snaps below and I’m hoping to write up some future blogs on ramadan which is starting on Monday and sadly it is another year that I cannot fast. I will miss out on the excitement! I may also write up a blog post on our journey with my daughter Aleena and share some cute pictures of my daughter.
Enjoy the weather and hope those who are waiting for a transplant that your wait comes to an end and you are given the gift of life.
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