Overwhelmed

I started writing this blog as something to keep, like a diary entry if you like. It’s messy, no structure etc, but after reading through it, I thought it might help somebody or someone may relate to it. So forgive me for the chaos, but I thought I’d give you the key to my mind and see a typical day through my eyes.

This morning Zachariah and I got in the car and headed out for an early physio appointment. I caught eye of Zachariah looking so happy in the back of the car as he laughed, danced and sang the whole journey. He was content, happy and loving life. I smiled. I took in the moment as it fixed some of the broken pieces in my heart and distracted me from the fear I had built up for today’s therapy session. My ultimate goals for Zachariah are to be happy. To be healthy. To receive countless opportunities. To be included. Looking at him in the little moment, his goals were being achieved. He couldn’t have smiled wider if he tried, he couldn’t have giggled harder, nor sang any louder. Zachariah was good!

Arriving at physio, we were both in good spirits. Yes my brain was working 100 miles an hour like always, but that moment in the car had given me a break, I was able to switch off and smile. I was able to feel the blessings rather than have them clouded with worries and anxieties. His therapist started to check Zachariah’s range and straight away noticed how tight he was, particularly in the ankle. Now, I am a realist, I know that Zachariah is extremely complex and has countless difficulties and issues, I know that his muscles are tight but there’s nothing like hearing it all out loud to bring you back, out of your bubble. That reality was that his splints aren’t meeting his needs, they need adjustments, the medication had failed due to reaction and the exercises weren’t happening as much as they should due to busy lifestyle. Professionals had left us with this struggle (not his therapist), and so it was forgotten almost that there was such a huge need that wasn’t being entirely met. I had chased said professionals and got nowhere. But due to the overload of things to get done and chase I had also let things slide. So together, the therapist and I worked out a plan forward. Amazing! But also overwhelming.

The amount of pressure we feel as parent /carers is just enormous! It’s unbearable most of the time. My mind began filing all the new information in, tried the reason with it and plan how to action it all. I started to doubt my previous decisions, wondered how my son had deteriorated so much. We seemed to be going backwards. Then his therapist started to tell me how we’d done everything, that I was doing an amazing job, and assured me that priorities aren’t always going to be physio, it is just a small piece of a picture picture. That was it. The tears came falling down. I was overwhelmed once again. Her words were too kind, I didn’t feel worthy of them. But also pointed out to me, just like the spinal appointment, that my son is so complex that whatever we do, he’s still going to struggle. I started to wonder what the point was. Why listen to him scream whilst I do his daily physio when Zachariah is most happy just chilling in the back of the car or in the garden. Isn’t that what I should prioritise? But his therapist reminded me that without it, he would be so much worse. But of course I couldn’t see how he could get any worse, when everything seemed so bad. Hips are dislocating, Scoliosis is worsening, reflux is still bad, epilepsy is uncontrolled, vision isn’t improving. And so it got to the point where I thought this just isn’t enough. I need to find out if there is more help out there. I want a full MOT done, going right back to the beginning to see if something more can be done to help him. Botox was mentioned, I started to think about second opinions.

My mind began suctioning all the information in until I became overwhelmed again! Where do I begin? Who do I start with? Who will support me? These questions ran loose in my mind. I then began to deflate. It’s all gotten too much again. Why is it the tools we put into place to keep on track fall down as soon as we hit a barrier? Why do we find ourselves lost, confused and hopeless once again? I feel we are let down by services not working together, by things taking so long to the point where the parent is chasing, things are missed, funding cuts mean that therapy isn’t given as much as the child needs. But that’s a whole other story. It becomes draining having the up and down approach to parenting. I can’t keep up with my emotions, so who knows how my husband copes with me! My reasoning had disappeared as I found myself falling low again and unable to breathe.

Being a parent/carer to a child with complex needs is such a huge role. It’s parenting with extra roles, such as carer, advocacy, nursing, organiser etc. I feel my mental health has been effected so much that there’s a fine line between happiness and sadness. I am losing myself. I feel unable to commit to things and have become very indecisive when making simple choices in life.Friends especially are left confused by my quick mood changes and last minute plan changes. I am so overwhelmed every single day with a long to do list, appointments, therapy with the rest of my responsibilities, such as running the house that it robs me from truly enjoying life with my son. I want to fix things, I want to do a million and one things at once, I want more control over the care he receives. It’s frustrating knowing exactly what your son needs and not getting it, and then knowing that it may only help a little bit, but that little bit is your hope.

Now I won’t say that this one therapist session brought all this on, it was a build up. Have I taken on too much again? Or was it reasonable to have had this blip today? You see how many questions I ask myself? Questioning my every move and doubting myself all over again.

As the day was almost over, Zachariah was still smiling, he was getting excited watching his Cbeebies as we settled down for bedtime. I looked over at him and entered back into that moment we had experienced in the car. I saw my beautiful, happy boy once again. He was content. I promised him I will never stop fighting for him, nor will I stop trying to make his life easier. I told him that mummy will have overwhelming days, but she will get through them. He laughed. No one knows what he understands, but I know for sure that he knows mummy’s presence and her mood. Being back in this moment connected us once again. There is time for fighting, worrying, fixing, being sad. But there is even more time for happy moments that need your 100% attendance. Today I want to celebrate the happy moments within the overwhelming chaos and worries of life. I want a fresh start and will continue fresh starts for as long as they are needed, as I know that there will be more days like today, days which feel too hard to get through. I will come out of them stronger and more feisty to ensure my son gets the best out of his life.

Much love,

Rochelle

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 YearMy 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