Tonic–clonic seizure | Sleepless In Newcastle

Hey folks, sorry I haven’t done my regular posts this week but I have been in a very dark place in the world lately and I am struggling in many different ways.

The state of the world we live in….

My binge eating disorder has been testing me so much over the past month it has drained a lot of my energy trying to keep on top of it and I exhausted almost all of my coping strategies to try and stop heading down a very steep slope again. I am winning the battle up to now but I really could use those positive thoughts from you if you can spare them.

Zanna and I have been working so hard trying to get things done for our charity work and things seem to be going well. We have been organising a Halloween Party, Christmas Party, Christmas Fair, Pantomime Tickets, looking for donations for raffle prizes and organising a sponsored ghost hunt. I have been doing a sponsored weight loss and over the past 2 months I have lost 17 lbs which (if all gets collected) has raised around £230.

We were at an award ceremony this evening for my 11…ooops 12 year old daughter, Manga. She was awarded the Headmaster’s award from her Primary School for her contributions to the school. We could not have been more proud of her as she works so hard in circumstances that most kids would struggle with. She does so much for her little sister, Pretzel, without so much as a word of complaint and she truly astounds me with what she is capable of. I know that she is going to be an astounding young lady and excel at whatever she puts her mind to. It was her birthday today as well which made the evening even more special for us and for her.

The world’s plan conspires against us….

Unfortunately, whatever power that drives this Earth that we live on decided we had been a little too happy and a little too complacent and hit us with a sucker punch today. We had the results of an MRI that was done on Pretzel in February and the results shocked us back to reality. It showed that she has parts of her brain missing and other parts that are underdeveloped. There is also some parts which are over-sized which all adds up to a big mess of everything. The thing is we were never told about these things when she had her first one done when she was 8 months old. To say it took the wind out of us is a little bit of an understatement.

The world our family lives in……

From the beginning of her life, Pretzel has been a bit of a conundrum for the medical profession. This is nothing that a lot of my ‘family’ over at SWAN UK have not heard before as it seems to be a common theme among our children. We just about managed to deal with the fact that she was resuscitated at birth after a traumatic labour for Zanna. We just about coped with the fact that she was admitted 2 hours after being discharged from maternity with low blood sugars and low Oxygen in her blood. We even just about managed to cope with the West Syndrome (Infantile Spasms) which is a rare form of seizure in children. It took many months to get her seizures under control and at a level where she could function day-to-day but by God we got there. We even managed to come to terms with the Grand Mal seizures she had that almost took her life on more than one occasion.

Pretzel has worked so hard along with us to try and overcome physical deformities, mental obstacles and so many other factors that no parent would want their child to go through. Developmentally she is still at the 18 month old level in a 9 year old’s body but she can walk around the house on her own, she can play with the toys that she wants, she has a stubborn determination to do what she wants, when she wants and she can hum ‘twinkle, twinkle’ like a champion. We are so proud of her for being able to do even that. We always held an inner hope that at some point in the future she would be at a level where she may be able to do things for herself a little more but after today’s news that has been snatched away from us and it has been snatched away from her too. I feel cheated……..not for me, for her. She deserves so much more than what she has. She has fought everything that this life has thrown at her and excelled through the worst of circumstances, but yet I feel saddened by the many things she will not get to experience.

She has been robbed of the chance to experience the joys of having a loving relationship either with us, her family, or with another person. She will never have children of her own. She won’t ever get to drive a car, go to work or have a social life that other teenagers enjoy. I think some parents take for granted that their child will walk, talk, grow and experience the world without a second thought that things could be so very different. I know this because I was the same with my other two daughters but Pretzel changed all of that. She has fought and struggled to do everything that she has achieved so far and it has taken hundreds of hours of therapy from Zanna, myself, Manga, Jaffa and the many teams of support staff that have known her. All of that work has managed to get her to the very basic level that she is at today.

The world of a father in pain……

So here I sit, like a knife has been wedged into my heart, bleeding and in pain trying to cope with it the only way I now know how………writing it down to get a message across about what my family lives each day. If I had the chance I would trade my existence for my daughter to have a life where she could experience the beauty of this world and some of the people in it. I wouldn’t hesitate to trade places if I thought she would be able to achieve on a level that everyone else does because her determination and perseverance through some of the toughest situations means that she would do something really great. I won’t get that chance though so we have to go on the only way we know how. We pick ourselves up off the floor, slap on some sticky plasters and bandages and prepare to head back out into the blinding, swirling storm of uncertainty. We live our lives day by day wondering what life will throw at us next. Will it be good? Will it be bad? Will we get through it and tough out the rough times? I don’t know what the answer is to that but I do know one thing…… We will go down fighting as one hell of a strong family that nothing could ever tear apart.

I ask of you one thing though folks, please, please don’t ever take anything in your life for granted. Live your life being as happy and content as you possibly can be. Appreciate everything that is truly wonderful in the world and sped your life surrounded by those whom you love and who make you happy.

That is all I can deal with writing for now folks, sorry if it did put you on a downer but it had to come out of my head and my heart to give me the room to grow in strength and determination to carry on once more.

Until next time folks, Stay Safe and Keep Smiling!