The Everlasting Nappy

Today was a good day. Zachariah had so much fun at nursery seeing his friends, getting creative with the paint and messy with the sensory foam. It makes me so happy to hear about his more interactive days, days when he’s really wanted to get stuck into the activities and join in with his peers. We sang all the way home and chatted about his day, then laughed as we walked over the bumpy road round to our home. It was here that we were greeted by a big box just sitting there by the front door, staring at us. I knew instantly what this box was and immediately shut down and started to feel the strong emotions of reality flood over me. Reality that my son was going to be in nappies all of his life.

We have always had an understanding that Zachariah may never come to grips with toilet training, and even accepted it to a certain extent, but at the same time, I’ve never felt how soon it would be that we would have to face the realities of it. Having limited core strength and struggling to sit unaided it was evident that he wouldn’t be able to sit on a toilet. And having no understanding of when he needed to fill his nappy and little understanding of when he had filled it, made it clear he wouldn’t be able to grasp the idea of communicating with us when he needed to go to the bathroom. Nappies and pads were always going to be the solution to Zachariah’s continence care. So why was it such a shock to see the delivery of our first medical nappies?

I guess now we’re in the age bracket when a lot of children move from nappies to pull ups and they’re starting to explore the toilet or maybe they’re even start using the toilet, it pains me to see the largest nappy I’ve ever seen delivered to my front door instead of a potty, story books on toilet training and fancy bum wipes that I see alot of parents buy for their toddlers. There’s no reward chart stuck on the wall to tally up all the successful trips to potty and no discussion of where our poo comes from. I hear it all sounding rather ridiculous as I type this, but I really am craving that silly weewee and poopoo chat with my growing boy that I hear my friends children have with their parents. I sit and wonder how harder it will be to change him as he grows ever so quickly and how he’ll never have that independence to go to the toilet in peace by himself. I just find it odd how I have always known this was going to happen but it is only now I see the true reality of my son not being able to take himself to the bathroom.                                                                                                                                                                                                                     To end this short blog I want to just stress how much Changing Places are needed for my boy and many, many more people out there who cannot take themselves to a toilet, as this reality comes with many challenges as it is without the fear of going somewhere and having to change them on a dirty floor. Without Changing Places we are limited to what we can do to help our loved ones live exciting and adventurous lives.

 

It would make my day if everyone of you reading this would not only like and share my blog, but also, the next time you are visiting somewhere ask them if they have a Changing Place..If they do thank them for their inclusion and spread the word. If they do not, then please take 5 minutes of your time to educate them on the need to have one for those who cannot take themselves to the toilet. A Changing Place is roughly the size of a parking space proving people with disabilities with a bench and hoist to be safely changed. Together we can make a difference.

Thank you for reading! Much love. Rochelle.

 

Turning 3

When you think of birthdays, especially in the early years of life, turning 3you think about balloons, cake and celebrations. You think about party games and gifts. It’s an exciting time and a day to celebrate another year of someone’s life.

I get this, and I want nothing more than to think about all these lovely positive things on Zachariah’s Birthday. Yesterday we had cake, balloons, friends and family and a lovely trip out to the Sea Life Centre. It was a lovely day and Zachariah enjoyed it immensely, even managing to stay awake the whole time at sea life. So why does it not stop there? Why do I also have these strong, horrible feeling of grief rushing over me?

I look back to the day we found out we were having a baby, 27th October 2013, it was Tim who came to me and urged me to take a test as he believed I was late with the lady thing, and so I took a test. Positive straight away! The joy and happiness in that house that afternoon was overflowing, we were going to be parents and we couldn’t be happier in that moment. But I also look back to the day we were told our baby may not survive as he had significant abnormalities on the brain, the ventricles had too much fluid and parts of his brain were missing. Going from the joy to this dreaded news, and this overshadowing worry, was to call it a come down would be an understatement. We were told many times to suggest termination as our baby boy wouldn’t live a ‘normal’ life, and told that we may not even get to meet him. Our dream of being parents were feeling less likely to be fulfilled.

Then I look back to the day he was born, 9th June 2014 and remember the relief of us actually meeting him, and the relief of seeing him doing OK. Just for a slight moment, I forgot what the Doctors had said and enjoyed the birth of my baby boy, before being reminded that he would have to be taken away for scans and tests very soon. Here, although I wasn’t entirely sure how our lives would unfold with Zachariah, I knew that we were going to be seeing a lot more of the hospital than I would have liked. I wasn’t wrong there!

I look at him now, in the present, and although I see his smiles, I see his struggle with severe reflux, and watch him, helplessly face nasty seizures. I hear him cry out with pain, pain he cannot tell me about, I play the guessing game in hope I can settle him once more. I witness the confusion when the room goes quiet and the surprise on his face when he hears an unexpected loud noise. In the back of my mind I am on edge, looking for ways to avoid anything that may trigger a seizure or chest infection, that may lead him to hospital and put his life at risk.

Finally, I look to the future to see and feel grief, I vision myself with tears of loss over my baby boy. I see a son taken away from his parents too soon. And in this heartbreaking vision I feel nothing but numbness that another year has gone by so quickly, when time is so precious. As you are reading this, I can imagine the confusion you are experiencing, as you all know that Zachariah is very much alive, yet his mummy is grieving over the loss of him. I understand that it may sound daft or even ungrateful, as I too struggle to comprehend such thoughts. The reality is however, Zachariah was given a number, the number 7, that’s 7 years of life that the Doctors had given him to live. He was then given another number, the number 10, from another Doctor. These numbers are permanently tattooed to my mind. They will not go away and whenever I celebrate how far Zachariah has come these numbers pop in my mind and try to pinch away the joy I am feeling.

So you can see here, that a birthday is not just a celebration of another year it’s a heartbreak of stepping one step closer to those numbers.

Because it’s always been important to me to be as positive as I can, I really struggle with these negative thoughts and try so hard to look away from them and direct my focus on the miracle that I see in Zachariah. Doctors spoke termination over my son, they spoke words of negativity and told his parents he wouldn’t lead a normal life. Well since they said these things, Zachariah has created a new definition of normal, he’s lived to 3 years old and he’s accomplished more than was ever expected. He smiles, babbles, drums, holds objects, giggles, manipulated his mummy and is learning to sit unaided. These are just a few of Zachariah’s talents but you can see how he is winning and he is proving the impossible. These are the thoughts I would like to enjoy and the things I would like to concentrate on. Zachariah is a miracle. Zachariah is very much here and I need to enjoy him whilst I have him rather than thinking about a time when he is not here.

This is just snipturning 3.pet into the mind of a mummy of a little boy with a life limiting condition. Lissencephaly is a rare, and very much under researched brain condition which affects so much of a child’s health and development. It comes with a number, it can come with epilepsy, respiratory issues, feeding struggles and significant developmental delays. In Zachariahs case of type 2, epilepsy is such a huge challenge and cannot be controlled, even by medication. This comes with a higher risk of life threatening seizures. Every day we count our blessings and hope that epilepsy will be defeated, but we also live with a little bit of fear of when the next seizure will strike and how much damage it will do. Zachariah does incredibly well in dealing with all the challenges he faces and I am so, so proud of him. It pains me to be so dull when he is so full of beautiful smiles, I try every day to be happy and enjoy precious moments.

Really hope you have read this in a way that you can understand where I am coming from, it’s raw and honest, and was very difficult to share with you all.

If you can relate to this, I urge you to be true to the feelings, be kind to yourself, and  lift up your spirits by balancing your emotions and thoughts, to avoid getting too caught up in the what ifs and the fears. I also reach out to you and pray for comfort and strength for you and your family.

 

Happy Birthday to My Daily Miracle, Zachariah!

1 Whole Year!

 

1 Whole Year

My Timehop has kindly reminded me this week that it has been a whole year since I published my first ever blog to Firefly and almost a year since I set up the ‘My Daily Miracle’ page on Facebook. It’s been such an incredible and emotional journey sharing, not only the ups but also the difficult times with all our beautiful, supportive followers. It’s so special to know that you are on this journey with us, and not only celebrate the achievements with us, but also support us through those times that may seem impossible to overcome.

Writing has never been something I have been very good at, and not really been much of an interest of mine, but none of that seems to matter anymore, as its so very therapeutic and healing. Writing has become something very natural and organic. Along the way there have been numerous spelling mistakes but it has all been real and honest. There has been lots of jumbled sentences along the way too, but those sentences have come straight from the heart.

Reading back on that first blog has brought up many emotions and I can see how far we have all come as a family since that blog. But can also see that being a parent is always going to have lots of trials and errors along the way. We’re always going to be learning and evaluating, we are going to make mistakes and we are going to celebrate triumphs. But all that is OK!

Zachariah gives me so much hope daily, and has inspired me to use that hope and write it down, sharing it with all of you. I have always wanted to be a positive speaker, and what better way to do that than speak about my gorgeous boy who proves every day that miracles do exist.

I hope that you all continue to read, enjoy and share my posts, and take something away from them to help you in your life.

Much love,

Rochelle x