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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.”

Lessons learnt 

As parenting weeks go this week has been one of the toughest and full of lessons.  Adrian and Dylan were both very ill with scarlet fever and we had a borage of appointments with Matthew to top it all off. 

The first lesson we learnt was that four of us do not fit in the bed. Dylan kicks all night and Adrian keeps waking up to punch Dylan for kicking him, it’s exhausting !!  So we divided and conquered – well Gary got the spare room and I got the boys. At least one of us was sleeping!

The second thing we learnt was that I will get at least one appontment mixed up every week. It may be the wrong date or the wrong location – whatever it is it will happen to me! I cannot be left in charge of Matthews appointments so I have now purchased a diary, which I haven’t used yet. The possibility of me being lost or late or three days early for an appontment next week is pretty high.

The third thing we learnt was that Matthew has another delay. To be honest it came as a huge blow to me and I didn’t expect it. After our assessment I cried the entire way home in the car, I just wanted to get home to my wonderful husband and all my boys and lock the door. I know as a parent you are supposed to be the strong ones but sometimes it’s not that easy, Gary had to tell me to stop crying in front of Adrian and Dylan. After my mini meltdown I made a promise that I wouldn’t let them ever see me crying over their brother again. Matthew is amazing and he is going to be brilliant, I know it. We have the rest of our assessment next week and I am determined that Matthew is going to ace it! I am following him around with so many books and puzzles I think he’s getting so mobile just to get away from me! 

So this week is going to be better. Adrian and Dylan are better and back at school, I’ve got my diary and we only have 3 appointments this week, all of which we are going to fly through ! And hopefully I will arrive on the right day … 

With Every Passing Phase of Life, Remember ‘This Too Shall Pass’

  

Where do we go from here ??

I’m trying to schedule our diaries for the next two weeks and to be honest, I just need more hours in the day! 

I look at other parents and they seem to have it all together, how do they balance the time?? Both myself and Gary work, I dropped down to four days a week when we had two babies as we just couldn’t balance the time. Now we have three babies and endless appointments… We need more hours in the day !! 

We have 6 appointments this week and on top of these we have changed paediatrician. I really have had my hopes built up for our first appointment and to be honest I expected disappointment. We cued for almost an hour to get a car park space, the place was really hot and we were an hour and a half late to be seen. Thankfully, it was worth the wait. I described the doctor as being really nice and Gary corrected me and said no… she was really efficient. She was so to the point. I had a book full of questions (no joke it was a full a4 book) and she answered all my queries with ‘ I think it’s reasonable to explore this more’. She turned our ‘waiting to see what would happen’ to ‘let’s explore this further’. 

I am not a waiter, I have no patience. It has frustrated me to no end that all we are doing is waiting to see what the enlarged ventricle ramifications may be. I am so happy that we are finally doing something, even if we don’t find answers at least we can start to rule things out and stop living in this limbo. 

Matthew is progressing so well and I truly hope that after all these tests we find nothing ! He has become so naughty and opinionated he really is a joy to watch. I washed his hair tonight in the bath and he wouldn’t talk to me for half an hour as he was so cross with me! All these things are positives, but we still have a black cloud hanging over us. 

I tried to explain to my Mum that I am not looking for a diagnosis, I am looking to rule things out. I am looking to test for everything and draw a line in the sand. Yes, I am nervous that we have started down this path but I am also excited. 

Matthews journey is full of joy and amazement. He is the most wonderful child and has brought us so much joy and postivity. He has made me realise that even though you may be faced with the biggest challenges in life that you can get over them with determination. I know that sounds cliche but you should just watch Matthew for half an hour, he is such a fighter. My little fighter, my little baby , my perfection. Oh heck… Where do we go from here ?! 

Let’s start the ball rolling! 

To my fearless son from you helicopter Mother 

To my Matthew,

You are finally sleeping and I am exhausted. We have had such a great day today, you took a little step! You are so brave and amazing and I am your biggest fan. 

I have to admit that I was shouting at your father when you took that step but only because I thought he was pushing you too much and I thought you were going to fall and break your neck, but you did it! I am so so proud.

I hope that you understand why I am so overprotective of you. It’s not because I think that you can’t do it, it is that I am so scared. I am scared to push you too hard and I am going to be honest I want to wrap you in cotton wool to make sure that the world does not harm you, and I do not know how to stop! You are lucky you have your father, he does not cut you any slack and he really pushes you.

I want you to know when you are 16 and ask to go out with your friends and I say ‘can I tag along?’, it is not that I trust you any less than your brothers, it is because I fear for you. I promise I am going to try to let you have the same rules as your brothers – but I can not promise that it is going to be easy for me! There will be times that I slip up and say “no, I am going with you!” And I know you will look at me like your crazy overprotective mother – but you have to know it is because I love you. 

You have to understand that you are my miracle and I feel like I need to hold your hand every step of the way. I really know this is not healthy and I am really really going to try and not be that crazy parent who chaperons you on your 21st birthday. I am going to try, but when I see you playing hurling or rugby I am going to look at you with such pride but inside I will be making a note of every child who bumps into you and trying not to ban them from ever speaking to you again. 

I hope you read this letter when you are older and you will be able to understand your ‘helicopter ‘ Mom. It is not because I think you can not do it. I hover because I want you to do it, I want you to succeed and be the brilliant man that I know you will be.

You have exceeded every medical opinion and you have taught me to never stop charging forward. We thought we might loose you, we thought that you would never sit, that you would never crawl and that you would never take that first step and a little bit of my heart broke. If I had my way you would still be strapped to me in your baby sling, sleeping in Mom and Dads bedroom and never leaving my side. You can thank your Dad for your normality, I don’t think you got it from me! 

I am so proud of you, so in awe of you. I promise I am going to try, please know I am trying! I have stuck that broken piece of heart back on, but there is still a crack. That crack reminds me of uncertainty and sleepless nights. 

Please have patience with me, sometimes I need a minute to catch up with you, but know that I am trying to catch up with you. 

From your helicopter Mom

X

I know God won’t give me anything I can’t handle – I just wish he didn’t trust me so much ! 

I introduced somebody to Matthew recently as my ‘miracle child’, it really took me by surprise! 

Matthew is this happy little boy who is so smart and so determined. He is passive in himself but at the same time he has found his voice and will make it known when his brothers have something that he wants!  He loves to be cuddled and tickled and is mischivious in his sense of humour. I don’t know have his obstacles in life made him this determined or was he just born that way, he has found this inner drive recently that has made him unstoppable.

 My Mother said something to me recently that I was really cross about and at the time I just thought it was a totally not relevant. She told me that God would only give me these struggles if he knew that we could handle it, I was so annoyed  by it. How dare my baby be given this struggle just because I can ‘handle it’. The last two years have been filled with joy but have also been a struggle that I would not wish on anyone.

The day we got Matthews first scan I really did not know if I had the strength for both of us. I went into the bathroom in the hospital and cried my eyes out, I was so lost. Every scan was worse and every day our due date crept closer. Then Matthew came and all these unknowns were thrown at us and we were all of a sudden supposed to know what to do.

I spoke to a Mum after I first had Matthew about her experience with her sons leukaemia, she told me the only way that she got through it was to hold on to the fact that this was not going to defeat them. She explained how she became an expert on everything to do with her son and that there was just no question that they would loose this battle. I adapted that mentality with Matthew and it has allowed me to survive to this point. 

Matthew is 18months this month  and he is doing amazing. The Physio was here last week and she stood back and said she thinks he is going to be walking by Christmas, she was so impressed with how much he has achieved and that he has surpassed her expectations. I heard what she said but I just parked it in the back of my brain and continued to focus on what he wasn’t doing. 

Matthew was awake all night on Thursday night and after I was past the point of exhaustion he was lying in my arms content to be sitting up watching me and telling me where my eyes ,nose and ears were and I think I for a moment I found an inner peace. To be honest it may have been exhaustion but I looked at Matthew and thought – wow , look how far we have come! It was the first time that I stopped and I just enjoyed this amazing little boy. Matthew is my miracle, and I absolutely know that he is going to make it. 

We have this exercise at the moment that we are supposed to put things in his way for him to crawl over,he gets so annoyed he just flings them out of the way and then gives us a dirty look. So Gary has resorted to bribery and if he climbs over something he is allowed to watch peppa pig on the phone. He is just so determined to do things his own way. He also recently decided that he can walk and keeps trying to make a run for it ( unsuccessfully!) 

I know it’s not time to stop being concerned and focused but it’s nice to be able to enjoy his progress and I know that no matter what gets thrown at us, I know that we are going to be ok. 

  

Life is short – get a theme song ! 

From the moment that myself and Gary had our first scan with Matthew we decided to focus on the positives and concentrate on what needed to be done. So far, it has worked for us. We have been so blessed that all the work we do with Matthew has been extremely progressive and he is defying all expectations, he is one determined little guy! 

Despite all this positivity I have been in a funk lately and I have been struggling to keep going forward. When I start to focus on the negatives, I usually put on my running shoes and hit the road, it clears my mind and I feel on top of the world. It didn’t work this week, I was unmotivated and just couldn’t focus on moving forward. My mind was foggy and I just couldn’t find the fight in me. I went out running for the second time this week and I was lost in maybes and what ifs when I remembered a time when I used to share a house with my sister. We used to crank up the music and dance around the house to get ready to hit the town. So I turned to my trusty spotify and found that old song and raced home with my head held high – I had found my theme song. I really wish that it was something a little bit cooler, maybe a Bob Dylan song or maybe a Beatles song but my song is working for me so I don’t care! I turned on the Destinys Childs greatest hits and found I’m a Survivor,  it’s a cliche song but I don’t care – it snapped me out of my fog and I raced home. 

When I got home I turned up the volume of the radio and me and the kids danced around the house, I think Gary thought I had gone crazy but the boys thought Mommy was super fun ( usually I’m the strict one!!) , we fell around the floor laughing in exhaustion. And then it came to me, we are Matthews champions and teachers but most of all we are his family. We laugh and have fun and dance around the kitchen like crazy people and that’s ok, because sometimes it’s ok for me to just be his Mom. He has paediatricians, play therapists, occupational therapists, physiotherapists and dieticians – what he needs from us is to give him his childhood back and to make him know that he can conquer the world just being himself.

  
So now I’m working on Matthews theme song, the two boys have chosen theirs – Everything is Awesome from the Lego movie, but so far Gary hasn’t approved any of the ones I have picked for Matthew. Watch Me ( whip/ nea nae ) by Silento or Mark Ronson, Uptown Funk. I do think that Gary thinks I may have lost it completely, but I’ve got my groove back and we’re ready to climb Everest because we have a house full of super heroes!

  

You are the anchor…

To my Husband….

Life brings us challenges and days that are harder than others and the last few months we have faced our fair share. People don’t lie when they say that being a parent is hard, and we could never have foreseen what joys and worries our amazing third child has brought us. We seem to have survived to tell the tale and have come out a stronger team.

When we had our first scan with Matthew I know you hid your worries to make sure that I didn’t totally freak out. Every scan, procedure and MRI you stood by us and pretended that everything was totally normal, without that anchor I think I would have crumbled. When Matthew finally arrived and he was whisked away from us you held my hand and told me everything was going to be ok, and I could see the worry in your face but you stood tall and calm. 

You know what I’m like, I am a worrier and you calm me. I insisted on checking us out of the hospital and you smiled and nodded and agreed with my bad judgement. 

Then the real work started when we came home. We have so many appointments and home visits, its exhausting, but you have been amazing. I think you have better coping mechanisms than I do!! When I haven’t slept for four days and I am screaming at everyone, you smile at me, pry the baby from my grip and tell me to go for a sleep, and I storm upstairs so cross with you in that moment and so grateful that I get to sleep for an hour. 

We have hours of Physio to do with Matthew a day, and you know what I am like. I want to wrap him up in cotton wool to make sure the world doesn’t harm him. So you push him and I get so annoyed with you for pushing him so hard, but I know you are right. His progress has been down to your determination and commitment – but I’m still mad that you push him so much !

When he doesn’t sleep and you leave him crying, I barge past you to save him. And I know you are right, but I just don’t want to hear him cry 😦  and I am sorry that he owns so much of me right now but you know the reason, deep down I am so scared. 

I am scared to treat him normally, I am scared to leave him down, I am scared incase he gets too tired, I am scared he finds things too difficult. You are our anchor to normality, You throw him up in the air, you don’t make life easy for him and he is this determined little boy because of you. 

I insist on buying Matthew play houses and slides and silly tummy time dogs! And you smile at me and say ‘ do we really need that’ and I say ‘ yes we do its for his development’! I don’t know how you haven’t killed me yet! ( on reflection … Is this the reason why you haven’t replaced my lost credit card??!) 

I am so proud of the father that you have become and the husband that you have always been. I have loved you from the moment you showed me the stars and you are so much more than you think you are.

X

RC Belle

In a Fog

I am in a fog the last few days and my heart is heavy. I am trying to pick myself up, but today it seems the fog is thick and today I am tired.

My week started off on a high, our Physio has been away for the last few weeks and I could not wait to see her to tell her Matthew was crawling. I had spoken to her on the phone during the week and she was so excited to see his progress. Myself and Gary walked into our appointment like two of the proudest parents, Matthew preformed on que and crawled around the entire room and then coasted all along the furniture, he did us proud. We all looked at him like he was the most amazing child in the world, and the Physio clapped in excitement and said he was brilliant, I was on cloud nine.

I don’t know what I expected her to say, maybe that he was cured? I really don’t know. She said six months ago she didnt think that he might walk, that she had had serious concerns, that today she thinks he will walk… but this is just one hurdle. She said his core is week, his back is arched, his feet aren’t grounded. She said he’s brilliant, that he’s working so hard but there was much more work to do. I had been so excited about seeing the Physio, maybe I hyped it up too much, today I am in a fog,

We have been so focused on one goal, to get him crawling, and we are there! I can’t tell you how at peace I have been the last few weeks. But I think I forgot that crawling was just one hurdle, one step closer and we have so much more work to do.

We are Matthews champions, every step of the way we will fight for him, encourage him, drive him and teach him. I can hear the advice in my head ‘ Crystel, this is just one goal, take each step as it comes, put realistic goals in place’. But today I am tired, today I want a miracle, today I want peace.

Tomorrow is almost upon us and tomorrow I will get up and get dressed, I will put my makeup on to cover the dark circles under my eyes, I will put a smile on my face and go to work. Tomorrow we have a new goal, getting from kneeling to standing and I don’t have time for this fog, I don’t have time to be tired as we have mountains to climb.

To the expectant mother who has been told there is something wrong

I know this is not the journey that you had planned, but you are here. You are here in this moment filled with uncertainty and fear, with joy and expectation – you are here. 

This road is going to be long and you need to prepare yourself.

Once you have made the decision to continue with this little life, there’s no going back, you need to start looking ahead. 

The hardest part of the next few months is the realisation that there is nothing that you can do to change this journey that you are on. Until your baby is born there isn’t much you can do other than wait.

Be strong and breathe; you’re job is  to remain focused on being the best Mom that you can be and right now you need to be the anchor for your family.

You are going to be seeing endless doctors and consultants – ask questions, as many as you can! If you don’t understand keep asking until you do. This is your little life so don’t feel bad for asking basic questions.

Google is not your friend ! Google will fill your mind with nightmares. Google the words once and then put the keyboard down! Ask the doctor and ignore Google !! 

If you are fortunate to have a partner on this journey, let them in. You are a team and whatever you are feeling your partner is feeling the same. You need each other so take the time to become each other’s biggest supporters. 

You will not stop worrying until your baby is born, I’d love to tell you different ! Take the time to enjoy just being pregnant, shut the world out and celebrate this little life that is growing inside you. Amongst all the unknowns there is one thing for sure, your baby is being born into love. 

When your baby arrives, this is it. Put aside your fears because you’ve got work to do. This is when your real journey starts. 

If there is one parting piece of advice I can give you, it’s put on your running shoes. You need to be at your best, if it’s only for 15 minutes a day just take the time for yourself. It’s so important to keep your mind healthy.

Your road is starting and it won’t be easy, keep your mind strong and your family strong. You are going to be ok ! 

Believing ? 

People that I meet and who I talk to about Matthew they all react in a different way. Some give me a knowing nod of sympathy, others tell me don’t worry everything will be ok but one thing seems to be consistent – they all tell me to just ‘believe’.

This concept of ‘believing’ is starting to bother me. What exactly does it mean? I think I am a positive person and I do think positive thoughts breeds positivity but there has to be more to life than just believing ? 

As you begin your journey into parenthood I think your perspective changes, believing that everything is going to be fine is not enough. We sacrifice for the good of our children so that we can celebrate their futures. You no longer get to hold on to your fears as you need to be the anchor. 

I do believe that Matthew will overcome all his obstacles and become the best that he can be in all things, but our journey will not be easy – and that’s ok! By accepting our road it does not mean that I don’t ‘believe’ any less, it means I’m willing to put in the work to achieve that belief. 

We will take joy in our inches and miles on this road. When we all look back at all the hard work and time that we have invested we will take a breath and know that all our hard work was so worth it and that our celebrations were epic along the way! 

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