It is Ramadan, sadly another year that I cannot fast. I have to take my anti rejection medicines on time and really there is no messing about with them. I have also been told to drink plenty of water, at least 3 litres to make sure my kidneys are healthy as one of the side effects from the medications are kidney failure. So if you see me eating outside, then please do not judge and think how greedy I am or how I am not modest. I had diabetes straight after surgery and I was on insulin 4 times a day. Luckily for me the diabetes was resolved while I was in hospital but still if I do not eat on time then my sugar level does tend to come down quite quickly. I find myself hungry quite often! I miss Ramadan tremendously. The unity we have as Muslims during this month is so magical. Millions or billions of Muslims are fasting throughout this month and it makes it so beautiful. We have the same targets, the same love and affection for our Lord. We are all praying for each other too which is so beautiful.
Today I was listening to a lecture by Nouman Ali Khan and he talked about sufferings and trials. I just felt so overwhelmed the way he interpreted himself and linked it back to the Quran. It made me feel really happy but also quite speechless. I know that we are given tests in this life and all the tests that are given to us mounts up to how much we can bare and handle. We are never given more than or less than we can handle and there is always, always ease after every trial in our life. But today Nouman Ali Khan explained it even more beautifully than I could have imagined. He said that, every suffering or trial is custom made for us according to our capability. We should embrace these trials and believe we could persevere through it. I sometimes find myself saying how tiring I find it looking after my 8 year old daughter who needs a lot of physical help but also a lot of mental help. Recently I have been feeling exhausted by it all and I sometimes I wish she didn’t have to go through some of the problems that she goes through. As a mother, I find it really painful. But I push these thoughts out of my mind only for them to resurface a bit later.
Let me tell you a little about my beautiful girl. I had a lot of complications with her when I was expecting. Specialists couldn’t find anything wrong during the scans and not even after she was born. The day she was born, my grandfather passed away. It was such a bittersweet moment. However, every time I looked at her, I could sense something. I didn’t find her features typical. It's hard to explain this part because she was my first child but every time I held her, that horrible feeling was there. We bought her home and she would only drink a very small amount of milk every few hours -15mls every 2 hours. She cried quite a bit but the midwives kept saying that some children take a while to pick up and because the birth was quite long and then it turned out to be a C-section that it affected feeding. After 10 days my daughter had lost a lot of weight and was dehydrated. She was hospitalised in the children’s ward and from there on, we started seeing her going downhill. She couldn’t keep 60mls of formula down and she would projectile vomit. It was horrendous the way she would vomit, it would just come gushing out like a hose pipe and it would be all over the room. This didn’t just happen once a day but it happened every half an hour! Then NG tube feeding was introduced with high calorie formula until they tried to find out what exactly was happening and why. We slowly found out that Aleena had abnormal heart defects, low muscle tone – she was very floppy. She had loose lax skin and her facial features were very distinctive. Luckily a geneticist had come to see Aleena and she had worked with or diagnosed a few children with Costello syndrome. She showed us pictures of many other children with these similar features but also discussed the symptoms. I can’t even tell you how lost and in denial me and my husband felt at that time. Our time of joy was turned into this never ending emotional roller coaster. I was fighting an infection from the surgery but also having to stay in the children’s ward but come home to wash the endless amounts of clothes that accumulated each day from Aleena’s severe gastro oesophegul reflux. We had to learn this new way of feeding Aleena via ng tube that required a lot of preparation each feed time which only resulted in her throwing it all back out. She cried, cried all night and day without a moments break. She was in pain from this horrible reflux. We were also trying to come to terms with that she belonged to a group where children had similar features and similar problems and deal with the sadness that Aleena wouldn’t grow up to be a typically healthy child. She was born very large but due to failure to thrive she never really kept up with her growth chart. It was so difficult to take in so much information. This syndrome is very rare that there are only a handful of children in the UK with Costello syndrome. So the next battle was trying to find out more and then we were educating the specialists because they knew so little. Eventually after 3.5 years Aleena's reflux got better but she was fed over night via a pump. That pump was so annoying. Apart from Aleena not letting me sleep for the first 3 years, the pump would always be there to break whatever minimal sleep I got because of its bleeping sounds! She’s had such a great team of therapists who supported us and still keep in touch with us. When I fell ill, they called and messaged. When my son was born they came to visit him and hugged me with tears of joy for experiencing happiness which we couldn’t enjoy with Aleena because of all the medical problems. But here we are after 8 years! We managed to get her off the bump at the age of 4.5 years. That was a journey that required so much patience. It took me a whole year to get her to eat and understand what hunger was. Some days I felt hopeless and other days hopeful! Her speech therapist guided me all throughout and encouraged me with so much positivity. She felt I should have written a journal to help other parents but that time I was so busy that I never got round to it.
All those feelings and thoughts I had when she was first diagnosed, they all slowly disappeared. I found myself loving every day with my daughter even though it was tough. I eventually realised that she had her own personality even if some of her features and problems were categorised by Costello syndrome. I realised she is actually a mini me. She is vocal and her speech is great although not clear and most of the things I can only understand! She finds it hard to walk without her special shoes and splints and has so many other problems and cancer risk but overall, this little madam has achieved so much more than I probably have in my life. She has taught us patience and has taught us to always have hope. Her personality shines through. Anyone that has come across my daughter, they’ll know that she is such a kind, caring, sharing, empathetic, compassionate and happy child. She is so wise and never says anything hurtful to a soul. When my son was born, there was no transition. She accepted him as if he was part of our life forever. She is so in love with her little brother.
So today when I heard what Nouman Ali Khan said about trials and suffering, I could relate to it instantly and it bought some comfort to my heart. I never would have thought I’d be able to go through such a huge trial as a young adult. Tube feeding a child with Costello syndrome? You must be kidding me. But I did. Allah knows what we are capable of. He knows that each and every one of us have a deeper side to us and even we do not know this side or dimension exists in us. We have no idea how much we are capable of handling emotionally and physically until we are not in this situation. Life will be hard for everyone and for some it will be harder but know that you will be able to manage it. Just believe that God has a better understanding of your abilities than you do yourself.
I thought Aleena would be my biggest trial and achievement in this life but when I fell ill, I felt shaken to the core. At that point, I really didn’t think that I was going to be able to handle any of this. I felt once I was out of hospital, I’d never live a fulfilling life. I was scared this experience would scar me for life which it has but in a good way. It is a reminder for me that I may plan so much in my life but only God plans for us and only He will help and support us in our time of need.
Here I am, looking after my children, being a mum and living my life happily. I am doing things differently from before but I’m appreciating everything which I probably did not earlier. Just starting a new day is a gift for me. I’m here for my children and this thought gets me through until my next day. However, now I will always remember Nouman Ali Khan's words and embrace every trial and believe I am capable of whatever sadness or happiness I am given.
It was a bit of a long post and maybe a bit spiritual but we all need to hear it at times! Here is a link to the Costello syndrome website if you are intrigued by it. There was so much more we went through and it would require many posts to tell you all about it! www.costellokids.com
Below are quite a few snapshots of Aleena. Enjoy looking through them.
