My world: an outpouring to those who will listen…

Posted on by 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!

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21 responses to “My world: an outpouring to those who will listen…”

  1. Sending lots of prayers, happy, healing energy and thoughts. You guys will get through this, and you are not alone…..

  2. Keith, you and your family were created for a reason – created for a purpose. You have been dealt a tough hand, no doubt about that. But that will make your story so inspirational as you overcome each trial that comes your way! We don’t know why these things happen, but every time you overcome one of life’s challenges, let that be an inspiration to you. Let that motivate you to share with someone else who will be going through similar challenges. The fact that you don’t wallow in your misery, but take the time to help others with charity is already a testament to the kindness in your heart. Keep up the great work, and don’t let these things get you down. You were made for a reason – created for a purpose! Inspire others with what you have lived through yourselves. Take care!

    • Thank you Matt,
      It was for those very reasons I created this blog. I would hate to think that there may be single parents out there who are doing it alone with no family support to help them either. I am very fortunate that my family is so strong and we will take it slowly and we will eventually get where we need to be. Thanks for your encouragement, it means a lot to me 😀

  3. I can only imagine the disappointment and loss you must be feeling, Keith. I am so sorry!
    I will be praying for all of you.
    One thing Pretzel has going for her is an intensely loving family. She lives bathed in that and in a beauty unique to her.

    • Hi Gina,
      Thank you for your lovely and kind words. She indeed is fortunate to have a family like ours who love her regardless of anything else she has difficulty with. She has made me and my family better people through so many different ways which makes me love and appreciate her even more.

  4. So sorry you are having a rough time of it Keith – So hopeful you are able to bear up under it all and will be praying for you all. We received similar news about our guys and it was so shocking at the time. {{hugs}}

    • Thanks Katrina,
      It was a big shock and something we half expected but not to the extent that it turned out to be. It won’t change our day to day care life for her but it does throw up so many more questions about the future for her.

  5. Oh, Keith. I wish I could come up with some wonderfully wise words to make it all feel better. I definitely feel for you, and I’m sending healing hugs your way.

    I may not have known you for long, but I can say with all confidence that you and your wonderful family will get through this. You may have to stop now and then to remind yourself how strong you are, but you can do it.

    • Thank you for your kind words Melissa,
      We are coming to terms with the news and we have started to formulate our questions and write them down to get some answers. We are strong enough to get through it but it will take a step-by-step approach to get there.
      It is so nice to see all of the support that we have 😀

  6. Hi Keith,

    Thanks for posting, I was wondering how you were doing. You’ve had a tough time it sounds like; sorry.

    I think working for charity and celebrating all the small victories shows your true character, something we all admire.

    How is school? Have you started; been able to keep up? Can’t wait to see your work!

    I am sure others have thought it but didn’t say it; would love to see a birthday pic or two, does your family bake a cake? Did you cook? Just curious…

    Mark L.

    • By the way, I still love the new format, your blog looks great with the various fonts and headers and color scheme. One of the best looking and easily read blogs I have found! You made all the right changes!

      Thanks again,
      ML

    • Hi Mark,
      Thanks for being so kind 🙂 I haven’t started the photography class just yet, it starts on Tuesday and I can’t wait to see what they will teach me. It is only a short course but it should be a good introduction though. I did buy myself a new camera to get started with a tripod and case to keep it in. I plan to take it everywhere with me and it is a nice 32GB card so plenty of photos to be taken!
      I do have some birthday photos around but I will have to check as they contain my daughter’s friends and their parents may not want them posted. I will make a note to take ones that can be used for future reference though.
      Normally we would bake a cake as I love to cook, especially as my Carrot Cake and my Chocolate Cake is famous in our family. I even cook an eggless cake for my sister-in-law who has an allergy to them! This year my daughter wanted Waffles though as they are her favourite. So we bought some buttermilk and had a go at making American style pancakes. She loved them so all went well 😀

  7. Life can be tough and seems so overwhelming at times – prayers coming your way. Taking one day at a time may help. Nothing happens in God’s world by mistake. Perhaps this is your destiny so that you can go out into the world and help others in the same situation. Stay strong and lots of love xxx

    • Thanks Sara,
      It has definitely focused our attention back on to getting the message spread about undiagnosed genetic conditions and how families like ours cope with the unknown day to day. It is nice to know we have the support of everyone here and also that everyone is wishing us well.

  8. Just sending you and your family a great big hug. I look at the photos you’ve put up of Pretzel and you know she has such a twinkle in her eyes, that girl is here for a reason. She and all of you have been dealt such an awfully hard hand. She may not drive a car or various other things but there is so so much life to live that I sincerely hope she will have other different and otherwise amazing things. Not least a family who love her so much, which is not to be taken for granted. I hope that tomorrow is a gentler day for you, and the one after that even more so.

    • Hi Mama Dragon,
      Thank you for your kind words. Pretzel is a lovely little girl and amazes us each and every day with the things that she can do.
      She may not be able to communicate with people in any way they can understand but when she smiles she could melt the heart of anyone.
      Thank you for taking the time to read and comment, it means an awful lot to me and my family.

  9. It takes a lot of strength to share your toughest feelings with people who you may not know personally and I must appreciate your effort in doing so Keith.
    You have reminded me once again that life should be lived one day at a time and we must make the most of that day and time. Even though everybody has to go through their share of troubles and problems but I agree that some of them have to face a lot. You may be one of them but remember; only the strongest can face the most tiring situations. What’s great about you is that you’ve come to be become a more humble person because of your situation rather than getting bitter.
    This phase shall pass very soon and good times are only a few steps away. You’ll emerge as a winner and I’ll pray for you and everyone you love and care about.

    • Hi Katie,
      Thank you for your support and kind words. It has taken a little time to get to grips with what we are facing but we have no other choice but to keep on going.
      The support and well wished from everyone who reads about my family helps steady us and keeps us strong to get through any situation.
      Thank you for taking the time to read and comment, it means an awful lot to us.