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Matthews Miracle

”Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.”

Our Story

This is our story of ups and downs, of ventriculomegaly and hypotonia. I hope it might give some parents a bit of insight into our lives and what a joy our perfect little boy is.

”Aerodynamically, the bumble bee shouldn’t be able to fly,

but the bumble bee doesn’t know it so it goes on flying anyway.” 

We all have a story, I suppose I shall start with ours! I am a mother of three boys and a wife of one wonderful husband. We began our unexpected and unplanned journey of parenthood with out first wonderful son who was a joy as a baby, he slept through the night at 6 weeks and we thought this parenting thing is easy!! So we were blessed with our second son two years later. He didn’t sleep for the first two years of his life and to say that he is a spirited little boy is an understatement!! So we decided… no more children!!

In 2013 we were very surprised to find out we were expecting our third bundle of joy! I was so huge at 12 weeks I was convinced I was having twins so we had our first scan and just one big baby! The pregnancy was going well and we were excited to go for our 20 week scan. At this scan we heard the words that every parent dreads – there’s something wrong. To be honest it was one of the scariest moments in our lives, our little babies ventricle was measuring larger than it should be. What did this mean ?? We heard words like ventriculomegaly, hydrocephalus –  I had no idea what these meant – the sonographer urged me not to google it but obviously I did. Google filled my head with images of babies with giants head, hydrocephalus and every parents scariest dreams.

Around Christmas time we got another scan and it confirmed the enlarged ventricle, so we were sent for an MRI and an amniocentesis. All these came back fine but the ventricle was still enlarged and growing, nobody could tell us what this would mean for our baby. We tried to focus on the positives but with endless scans and doctors appointments it was really hard.

The day came for me to be induced, and our little baby did not want to come out… after a very long 15 hours our little boy arrived at 23:55 – not breathing. It was the longest 8 minutes of our lives. Sirens went off doctors ran in, and still there was no crying. The faintest little murmer’s started to come from this little bundle of joy, but there were still concerns. He had such low muscle tone, he wasn’t feeding and obviously his enlarged ventricle still hung over us.

After three days we were discharged with this lovely passive little boy who loved cuddles and kisses, but what were we to expect for his future?

This is Matthews story…

Featured post

Two worlds

I exist in two very different worlds. In my safe world at home I have this beautiful loving boy who loves fire engines, hugs, kicking the ball and playing hide and seek. We laugh often and our world is full of hope and possibility. We celebrate the smallest milestones and we find joy in every moment. 

Once I leave these four walls and enter into the outside world, our days are full of questions, paperwork and missed milestones. We are full of unknowns and constant concerns. I spend my days meeting with experts who only want to focus on the negatives. We focus on what Matthew can’t do and what he is behind on. We write it in a form and make sure we highlight the worst points. I tell them despite all this we are full of hope and determination for his future, they say that’s just a little too positive so we don’t put it in the assessment. 

When we leave our four walls we seldom visit friends. Matthew won’t leave my side and to be honest sometimes I just don’t like answering people’s questions. Anything Matthew does I see friends give me a knowing nod like is this because of his ‘condition’. I smile and say no, you are a stranger and he is acting like a normal three year old. I won’t lie – he then usually makes a run for the front door and runs down the road screaming “no running, no running” – this is perhaps not normal behaviour ! 🙂  But in our cosy walls I can control the situations and life is normal. Matthew is happy to play with his brothers and sing and dance just like any other little boy. It has become easy to stay at home, to close our doors and control our environment. The outside world reminds me of all our unknowns and life becomes hard. At home we can manage anything!

I have a weekly conference call with work that I do from home – I have become an expert ninja mother at managing this! I make sure all the doors are locked ( in case Matthew decides to make a run for it), I make sure there are no objects on the kitchen table that he can fling anywhere, the microwave is turned off at the plug, I hide the step on top of the fridge, I make sure all the taps in bathrooms and kitchen are screwed tight so he can’t flood the bathroom (again), I put on the Tv, one biscuit, one juice and gently close the sitting room door. I set up my computer and phone and instantly put myself on mute so no one can hear Matthew if he cries. If Matthew comes in I throw the phone and laptop under the table cloth, if he sees the phone I have lost the battle! When the call is over a sigh a huge sense of relief and then … go and assess the damage. First, I take him off what ever table he is standing on. I then go to each of the toilets and retrieve any toys he has decided needed to go for a swim. I make sure he hasn’t tried to microwave anything and that he still has ten fingers and ten toes. Successs – at least 50% of the time ! Then we sit down and have some tea together as I feel like I have ran a marathon. 

Then the guilt sets in, what could I have been doing with him in that half an hour when he was watching TV? Maybe I’m not doing enough ? What more could we be doing ? Maybe I should be bringing him to swimming? Craniosacrial therapy? Should he be gluten free ? Dairy free ? I don’t know…


I have taken an unexpected turn and have become a stay at home Mom, and I have learnt to love it. I love being the person my boys run to and I love being the one who does their homework with them. But … I also love to work. I have an inner workaholic inside me that I have tried to suffocate whilst I have been at home , it’s not going so well ! By suffocating her I have now become a soccer coach, a scout leader, I am doing a Masters and I also work part time. These distractions allow me to not focus on the black cloud that follows us and to keep life normal, but some days are harder than others. I am thankful for every hug and cuddle I get from this wonderful boy. When I say goodnight to him I hug him that bit longer so he knows that he is so loved. I stare at him when he is sleeping and I wonder what his life will be like, will he grow to be a doctor, a lawyer – what will be on his path.

These cosy walls are filled with endless love, hope and happiness. 

Finding the river bank

My little warrior turned three today. The house has been decorated, presents laid out on the table, and my heart is heavy. I struggle with Matthews birthdays. I see the milestones that have passed us by and I wonder where we will be in another 12 months. I know he has come so far, further than many believed he would, but he has so much further to go. 

The last 12 months have been life altering for all of us. We have all had to change our paths to focus on getting Matthew to achieve his very best. I have taken a break from work for a while and become a stay at home mom. We have all had to adjust to bringing sign language into the house, having a closed door policy and above all that life is busy. When I started my career the idea of being a stay at home Mom horrified me. We welcomed our first son Adrian into the world eight years ago and as much as it pained me to leave him we were able to juggle things. Then came Dylan who refused to take a bottle or sleep and although it pained me , I did eventually go back to work. Life became a little bit harder but we were still able to keep juggling. Then Matthew arrived and with endless appointments and the two boys in school juggling became impossible.

Being a stay at home Mom is a role that I never thought I would take, but one that I have enjoyed evolving into. I won’t lie, it has been a challenge, but one with countless rewards. (Just this week Matthew started saying little sentences and there is such excitement in the house! )

What I have struggled with the most is that I have become, in so many circumstances, ‘Matthews Mom’ and I have wrestled with that identity. I don’t know when it happened, that moment, that moment when I stopped becoming a wife, a daughter, a friend and all I became was ‘Matthews Mom’. 

I am like every parent, I spend every day trying my best for my children and every moment wondering is it enough. No more so than when you have a child that requires you to work extra hard. It consumes your every moment and it doesn’t really allow for anything else. I have to try so hard to make sure that all my boys get enough from me so that they never for a moment think that I am just ‘Matthews Mom’. Finding that balance is so hard. I am trying not to use Matthews appointments as the reason why we don’t do some things,while still pretending to be Batgirl, when I am really trying to make sure that Matthew doesn’t make a run for it outside! But sometimes it’s not enough, last week Adrian told me that he thinks I love Matthew more than him. I said of course not I love all my boys just the same – and then he said he thought our baby was broken, and my heart broke into a million pieces. I tried to explain that Matthew is just taking his time learning how to run and talk and that he was so lucky to have such a great big brother. I couldn’t sleep that night – I thought I had been doing a good job keeping things all together? How do people balance it all ? 

Matthews name means ‘a gift from God’ and there is not one day that I don’t believe it. He may have thrown our lives upside down and turned our plans around, but he is one of our biggest blessings. I have grown a love and determination that I never knew I was capable of. A family love that is limitless, that is based on protection, giggles and unlimited faith. Faith that our road is not going to suddenly stop. That despite the hills and mountains put in our way, there has to be a good end to this story, a peace and a moment of attainment.

Welcome to the club…

One day in a waiting room a couple waited anxiously for the doctor to tell them that their baby was going to be just fine. The doctor looked down and shook her head and told them their baby wasn’t perfect. They wondered were they to blame, they already loved this baby so much they could not make the choice, they knew they would never give up on this child. They would give this child every chance, no matter what the price. On that day, unbeknownst to them, they joined a secret club of parents who had all sat in these chairs before them waiting to hear their news. 

Once they joined this unwanted club they forgot about who they were and who they were supposed to be.  Their days were filled with battles and uncertainties, with therapies and waiting rooms. As time passed they realised that this fight was here to stay. But one thing is for sure, they learnt the club survival tip number one – how  to say that things were just fine. Some days they felt a mess and on the verge of crying, but you would still see them smile and say ‘thank you, we are all fine’. 

On the days when they spent hours ringing three doctors to be told he’s “on the list”, they learnt that persistence is a virtue that comes with this club membership. They learnt that persistence and patience were two great membership gifts and so they kept ringing until their baby was at the top of that waiting list. 

They became fixated with the future, what will lie ahead for this little soul? They wondered what Gods plans were and where this path will lead. Then one day they realised that today there was no fix, today they could not change things, today was just for play. So that day they simply messed around and were grateful for each day, as although each day brought more questions they also brought more love. And on that day they learnt another club lesson, something’s just can’t be changed and there is always time for play.

Their days filled with appointments, and weariness followed, for they realised that staying strong was not the only thing.  Some days are long and some days are hard and the work is never done,and so they learnt the next club lesson that on days like these it’s ok to fall apart.

They could not rewrite his story, they could not fix what was broken. And so one day they learnt the final lesson, that although each day will be an unknown, that they were no alone, they had joined a club full of warriors. They had been chosen for this baby and someone must have known just how much they would cherish this little blue eyed boy and that they  would never stop the fight. 

Today I lost my way 

Matthews speech has been lagging behind the last few months and it has been a worry. He understands everything and can communicate what he wants, but his words just aren’t coming. This week his speech therapist decided it was time to put a communication system in place, it was difficult to hear, but I knew it was a decision that had to be made. 

She decided on combining both Lamh ( sign language) and PECS ( picture exchange communication system). She went through how to introduce them and explained how to involve the whole family and that the signs are here to aid speech development and not replace. Before she left she said to me that she had seen parents gets consumed with speech and that sometimes the words just don’t come, she said to make sure that I don’t get lost down this hole. I nodded and agreed with her knowing deep down that I would be fully immersing myself into getting Matthew to talk and that I just didn’t have room in my heart for an ounce of doubt. That this next journey would undoubtedly become my new obsession. 

I have spent the last four days googling and pinteresting everything I could. I have put pictures up of the words we are signing all over the house. I have sat down with the kids and explained what we are doing and have reminded them at every opportunity to do the signs. I have screamed at Gary ( more than once!) for not using the signs and for not letting me spend €150 on a PECS board that is clearly a necessity ( a white board with some Velcro strips). I have told everyone in Matthews day to day life to make sure they are using the signs. I have prepared, we are ready, we will make this work, he will talk. 

Yesterday Gary was throwing Matthew up in the air and I was shouting at him for not using the sign ‘up’. Gary looked at me quizzically and he said ‘but he’s saying the word’…  Well that was a surprise …. ‘Up up up’ he kept saying. I hadn’t really prepared myself for that to be honest!

I have become an expert on all things speech but it seems along the way I think I forgot to involve Matthew in the process. So I sat down with Matthew and rolled the ball for half an hour, and I forgot about using the sign for ball 150 times and we just played. I would be lying if I said my focus was still not 100% on Matthews speech. I still have no room for doubt, but perhaps it’s possible to enjoy the little victories while still concentrating on conquering the next mountain.

Words

Over the last two years I have processed the words that were given to us for Matthew, ‘ventriculomegaly’ and ‘hypotonia’. I understand these words, I have researched them and connected with people all over the world who have the same words. I feel like I am somewhat in control of these words.

Recently we got new words and I do not have space in my brain for these words. We have our two words and they make sense to me and I understand every corner of the boxes they fit into. These new words are different, they don’t fit into just one box. These new words I am afraid of. 

I like to be in control and I like to research and understand what the doctors are saying. I am an expert on all things hypotonia and ventriculomegaly related. Gary is better with words than I am, he just doesn’t think they mean anything. For me, they resonate in my brain and I worry. I wish I could be like Gary. He’s right, these words don’t change things, they are just information.

I tell myself that words are just labels… But these labels make me worry, they rob peaceful sleep from me, these words I am afraid of.

My wonderful Matthew, he is so precious. So headstrong and heedless, so smart and mischievous. I wish he didn’t have these words in his little life. 

So what do we do with these words ? I don’t know…. can I put them in a box and ignore them for now? I am not going to lie that is what I want to do! I don’t want these words to consume us and dictate our course. So perhaps I can file them away for the moment and try not to obsess? 

Nobody can prepare you for not being able to fix all the obstacles that are placed infront of your child. Nobody can understand the uncertainty that takes over your heart. Nobody can see the constant worry that follows you everyday.  No one can understand what lengths you will go to help your children. You will try anything at the off chance it will help delete the words. 

Clearing my news feed 

I have this obsession for information when it comes to Matthew. Every result we get leaves doors half opened, never totally shut and never totally open. The minute we get a result I spend my days and nights on Facebook and forums and googling every possible combination. When I check my Facebook, my feed is flooded with stories of other people’s journeys. I imagine walking a mile in their shoes and I wonder will this be the walk we will take with Matthew. 

We never get a straight answer from the doctors, every answer we get is – we just don’t know. We don’t know what his future will hold; they explain the worst situation and then say this is just one possibility maybe it won’t affect him at all!! In some ways I wish we could get a clear answer, in other ways I am glad we don’t have the limitation. I have to believe what I know to be true, that Matthew will be great. 

This weekend I have been in a fog, my head has been filled with other people’s journeys and my heart has been heavy. I hate when I get like this I just can’t focus on the positives. We had a workout on Saturday and it really cleared my head, in fact half way through the session my trainer laughed at me and said ‘slow down super woman!’I had a lot of anger to work through! It gave me clarity.

I went home that night I unfollowed, unfriended and deleted every group that was clogging up my news feed. ( if you survived the cut it means that I value your outlook on life, you survived as well as the Dalai Lama!) 

Sometimes we can be so obsessed with information and forgot about what is right infront of us. This little boy who is so happy and giggles so much when we chase him down the road, who grabs my head to kiss me when he’s not happy, who sticks one thumb in his mouth and the other in mine because he is tired. This is our road of uncertainty and bumps and information can only get us so far. Living will get us the rest of the way. 

I hope you survived the cut !! 
  

A new chapter 

I love watching the boys sleep, when I put them to bed I take an extra minute to look at their sleepy faces and wonder what dreams they might have. I wonder what they will be like when they are older, will they be teachers or doctors or maybe an engineer like their Grampa. In those little minutes after a stressful day I think of how I have been blessed. 

Matthew turns two this month and I can’t believe how time has flown. Our lives changed so much when Matthew arrived and after two years I can finally say I think we have finally found some calm.

Last month we started a new chapter, I have significantly reduced my hours in work so that I could focus more on Matthew and the boys. These early moments in their little lives are so important and laying the ground work now is so vital. I have had such mixed reactions from people when I tell them I am staying at home, it seems that opting to stay at home now is no longer an obvious choice for a woman. I find myself justifying my decision by saying the decision was all about Matthew and not permanent, this usually makes people more comfortable! I feel like I am betraying all woman by saying that I’m enjoying my moments at home. It’s peaceful, and for the first time in a long time I feel like we are finally in control. Matthews appointments are easier to organise and I no longer feel like I am permanently juggling. Control Is a very calming feeling.

This time last year I was distraught when Matthew turned one and I really struggled, he was behind on everything and I could not breathe or see any light. With Matthews upcoming birthday I finally feel such relief. He is finally walking, he’s found his little voice and I can see the light. I feel like all our hard work is eventually paying off and I know for sure he is going to be ok. 

I would be lying if I said that somewhere in the back of my mind I wasn’t still concerned, of course I am, we are still waiting on results for genetics and brain scans and metabolic testing, but I am not stressing about it. This is a definite step forward for me!

 I know that everyday may not be good but with three amazing little boys by my side there is always something good in everyday ! 

  
 

Who will be our voice ?? 

I would not say that I am politically affiliated with anyone, but I love politics. I love the strategic game and theatre of it. I cannot claim to be left or right, I would say I am in the middle. I believe in fairness, common sense and work. I think we should protect our most vulnerable and reward people for entrepreneurship and hard work.

This month sees the start of our election 2016 and for this election it has been the first one that I have a cause that I am passionate about, and I cannot believe how few politicians care! This election I have been asking canvassers about their policy on early intervention and caring for children with extra needs. Most have looked back at me with blank faces and talked about caring for the elderly. 

I have asked them:

  • What is their policy on raising the age of early intervention until 12? Clare have a great service but once kids turn 6 the lack of resources is outstanding and I am fearful what will happen when Matthew no longer qualifies for early intervention.
  • Lack of children’s services not only in the mid west but in the entire country eg I will be waiting 8 months for an mri for Matthew and I was waiting 7 months to be referred for the western health board to the mid western health board. These are months that have been robbed from my sons development.
  • Why is there no joint application for discretionary medical cards, domiciliary carers allowance , carers allowance and incapcitated Childs tax credit ? If this was dealt with by one single agency and or application would this not save money in the long run? There is also a total inconsistency with rulings and the waiting list is ridiculously long.
  • There seems to be no emphasis put on carers for younger children, it seems we only care for caring for elderly. What is are the candidates position on this ? I know caring for the elderly is popular at the moment and in the news and extremely important but there are thousands of children who need extra help and we just need someone to represent our needs

There have been startling cases in the news recently of children waiting three years for an appropriate wheel chair, not being given feeding tubes and waiting months and months for services. Who in this country would begrudge a child getting their fundamental needs??  Early Intervention for children is so vital to ensure that they reach their full potential. 
Even if politicians cannot empathise with the plight of a parent let’s look at it economically. The more time invested in children at a young age ensures the more independent these children will be going forward thus costing the state less in the long term. 

I cannot believe the lack of representation and empathy from all the canvassers that have come to my door. These children need a voice, a person who will champion their equality, but it seems their are more important issues out their than the future of our most vulnerable.

It takes a village to raise a child

We present ourselves as the perfect family, boys all dressed in matching clothes and Mom and Dad dressed in their Sunday best. We are well educated and have good jobs and people look at us and think we have it all together and we seldom allow the village to help.

I have gone through two beautiful babies who didn’t sleep at all. My beautiful Dylan hated the world except for mommy and did not sleep more than 20 minutes at a time, he almost broke me! But we still smiled and said no to help and dressed in our Sunday best never missing a step – the village seemed very far away when I was suffering from extreme exhaustion !

My Matthew came next and turned us upside down, I paced the floor with him for hours while he screamed and refused sleep. We faced new concerns and worries and this time I couldn’t hide the cracks that sleepless nights were making, this time I said Gary I’m so tired I need to sleep! It was a strange feeling to allow people to help. It started with a birthday party when I was going into hyperdrive and couldn’t see how I could get everything done – my sister asked me did I need her help and instead of saying that I was ok I said, yes I really need help!  

As parents starting out we live in this beautiful bubble, we look at our babies and believe that we will protect them from everything that the world can throw at them. But what happens when you can’t protect them? 
I have found through this journey ( I hate that word!) that some people can actually help.  I have to admit that some people have a lot of opinions that I don’t want to hear ! But some people have words of widsdom to whisper.

Over time I have realised its not the village that raises the child. We have grown with the support and advice that we have received from friends and family.

So I have revised that old saying – it does not take a village to raise a child, it takes a village to raise its parents. 

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