Life as an Additional Needs Mummy

Posted byFractured Faith BlogPosted inA Fractured FaithTags:, , , , , , , , , ,

I am a mummy to three amazing children one of which has additional needs and relays on me for her personal care. I love being a mum and I’m really enjoying watching my teenagers turn into young adults. I look at them with so much love and pride that sometimes I think I could cry. Don’t get me wrong there are times I look at them and I could cry because of the attitude they have but they are teenagers I was one too a long time ago and I am so thankful to God that none of them are as troublesome as I was to my parents, but that’s another story!

Our lives could be so much different today if Stephen and I had took the advice of doctors when we went for our 20 week scan with Hannah. We were told at our scan that she had spina bifida and hydrocephalus and that she would be severely disabled both physically and mentally. My heart sank, the room was spinning and Stephen almost passed out. Our image of our perfect world was crumbling to pieces and we couldn’t escape.

We were advised by doctors at that appointment to have our pregnancy terminated and because we were at 22 weeks gestation we were given 24 hours to think about it and get back to them with our decision. We both knew that that option was not on the cards for us we had been blessed with this pregnancy and we were continuing with it no matter what the outcome would be we were giving our baby the chance of life. From that day we gained the strength to fight for our baby and as I write this today almost 16 years later we still fight for her with her by our side.

My life changed forever that August morning at Hannah’s scan when we were given her diagnosis. At that time I had been working full time in a job that I loved but the people I worked with their attitude towards me changed they all felt sorry for me and I could see it in their eyes. I didn’t want people to feel sorry for me or pity me I wanted to be treated just like any other pregnant woman. I ended up starting my maternity leave early and got myself mentally prepared for what lay ahead for me.

Being a mum to a child with additional needs, in my opinion, is a very scary experience but it is also a very rewarding experience. The night before Hannah was born I was terrified of her being delivered into the world. I had made it this far with her she was safe and loved and I felt I could protect her from anything. I didn’t know what was going to happen when she was delivered; would she be able to breathe on her own, would she know me and her daddy, would she be able to walk or talk or feed. These things were all unknown to me and if I thought the last 18 weeks had been a rollercoaster of emotions I was in for a huge shock.

As soon as Hannah was born she was taken to the Neonatal Unit I didn’t get to hold her she was brought up to me to look at it then immediately put in an incubator and whisked away for medical attention. At that time I was so relieved that she was here and she was breathing – that’s my girl keep fighting you’ve only just been born and that’s two things ticked off the list that the doctors told us you wouldn’t be able to do:

1. Survive the pregnancy and birth

2. Breath on her own

For what seemed like an eternity but only an hour or so I finally got to see my beautiful girl. The nurses wheeled me up to the neonatal unit from the recovery room and there she was the youngest baby in the unit and the biggest i thought my heart was going to explode I had so much love for this tiny human and I knew there and then she was a fighter.

Hannah’s first few months were very intense our time was shared equally between hospital and home. She had countless surgeries the first one when she was just a day old and our girl never let us down she kept fighting and proving the doctors wrong she was our miracle girl.

As a mummy to a child with additional needs I have found myself at different stages along our journey grieving for a life that I thought I would have but it wasn’t to be. Life was slowly becoming lonely for me Stephen was at work all day and I was at home with two young children who were only 17 months apart in age. Most weeks had hospital appointments, doctors visits or community nurse visits. Friends had stopped asking me out because every time I was invited I had an excuse not to go. Life was never going to be the same again or so I thought.

We have faced many obstacles with Hannah and each time it has been battle which we have got through and that’s thanks to our faith and our determination to make sure that Hannah gets the best care that she requires.

Sometimes when I’m feeling a bit low I think of all of the things that Hannah has been able to do and I feel so proud of her and the young lady that she is turning into. I still continue to tick off on my mental list all the things that Hannah continues to do which defies what the doctors initially said she wouldn’t do the most recent being skiing on the dry ski slopes. Just a few weeks ago she hugged me and thanked me for not listening to the doctors and for giving her a life – that girl can melt my heart like chocolate.

Without having Hannah in our life our life would be very dull. Hannah brings us so much joy and happiness and along with Adam and Rebecca a lot of grey hairs! We don’t have a big house, two holidays a year, cars and money but what we do have money couldn’t buy. We are a family that love each other unconditionally and we support each other in everything we do. We have been riding this rollercoaster for 16 years now and right now we are enjoying the ride.

I have no idea why I have wrote this today I sat down on the sofa a few hours ago with a cup of tea picked up my phone and started typing this out so I believe that this is a message for somebody.

If you are in a situation similar to us or are a parent of a child with additional needs and would just like to chat send me an email and we can get something arranged.

A diagnosis like this during pregnancy doesn’t mean it’s the end it can be the beginning of an amazing journey with many bumps along the way but the rewards are priceless and are something that money can’t buy.

Published by Fractured Faith Blog

We are Stephen and Fionnuala and this is our story. We live in Northern Ireland, have been married for 17 years and have three kids - Adam, Hannah and Rebecca. We hope that our story will inspire and encourage others. We have walked a rocky road yet here we are today, together and stronger than ever. We are far from perfect and our faith has been battered and bruised. But an untested faith is a pointless faith. Just as a fractured faith is better than none at all. We hope you enjoy the blog.

38 thoughts on “Life as an Additional Needs Mummy”

  11. I can’t imagine what that is like.
    My youngest daughter was born two full months early and whisked into an incubator… but she was OK. She came home in the following week. It never even occurred to me how lucky we were.
    At six months (four months in size) she had meningitis. She came through that. Later we discovered she was dyslexic, and her particular style of dyslexia leads me to believe it was a result of meningitis, but one little lad at her playschool emerged blind and deaf from the disease.
    We were lucky.
    After leaving university (unthought of before we discovered her dyslexia), she traveled. In Australia she picked up a bug which led to a serious lung infection. Her boyfriend called us one morning at 7am to tell us she had been in surgery for three hours while they cleared gunk from her lungs.
    she survived that and is running again. She’s a survivor.
    Now, at 34, she has ovarian cancer (discovered when she was being treated by a fertility clinic for endometriosis). It has proved resistant to chemo and reached her lymph nodes. She is on hormone therapy. She’ll never have the child she was trying for, but she’s accepted that and remains positive and cheerful.
    Your daughter sounds like a survivor too, with the challenges she and you have, and will have to face. I can’t imagine it but they deal with it.
    Here’s to the survivors, and here’s hoping they continue to survive and thrive.
    Well done for meeting the challenge. I’m not sure I could have.

    Liked by 1 person

    Reply

    1. Thanks Cathy I’m really sorry to hear about your daughters current battle I will most definitely keep her in my prayers. Your daughter is the kind of person that I look up to and admire they are the real heroes in this world who take on whatever is thrown at them and fight it head on they don’t fall to pieces and give in. Thank you for reading and sharing with us ❤️

      Liked by 1 person

      Reply

  15. Thank you for sharing your beautiful story. It is a story of love, hope, faith, and family… all of which the world needs much more of. Blessings to all of you as you continue your journey.

    Liked by 1 person

    Reply

  18. Thank you so much for sharing your journey. It is wonderfully amazing. It brought to mind the conversations my wife and I had during pregnancies. As older parents, we were considered at risk by the medical community. We were a bit naive regarding the plans and decisions we would be asked to make if testing showed our baby less than perfect. We decided that if God blessed us with a special needs child, he would also bless us with the wisdom, patience and love required. It is great to read and feel the love your family has for one another. May God continue to bless the Black family.

    Liked by 1 person

    Reply

  19. I feel like this was meant for me. Reading it pulled on the emotional baggage I have been weighed down with lately. But for my story, it isn’t the uplifting tale of a parent who found blissful fulfilledness with accepting the courage to take on a child that was more special in ways. For me the connection to your tale comes in the loneliness you felt when your whole life became about your family. When the outside world faded away and all that you knew were the people you were responsible to care for.

    I am in the midst of that loneliness now. I don’t agree with the state of the world and the effect that it has on my psyche. I have cut out FB, I have cut out reading any news, I don’t have friends to hang out with, I don’t have people to talk to apart from my husband and my children. I am alone. And yet not alone in my fight for happiness because my lonely feeling is being the mother in a group of six and feeling the weight that comes with it. While I am not alone, I am solitary in my role and I am completely cut off from everyone who could talk with me about it.

    I’m a recluse and I’m going a little stir crazy from the lack of connection and communication that exists with those not caring to talk about the weather but rather have deep and meaningful and time consuming conversations.

    Thank you for taking the time to share your tale. It is one I will remember for always because it is another tale of a mother who gave up everything for her family. As we always seem to do.

    Like

    Reply

  20. This is so beautiful and I’m grateful you opened up and shared. I’ve heard similar stories from other mothers, not knowing, but fighting, and how their baby, kid, teen, even adult continues to astound them with what they can accomplish.

    Like

    Reply

Leave a Reply

Please log in using one of these methods to post your comment:

Gravatar
WordPress.com Logo

You are commenting using your WordPress.com account. ( Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. ( Log Out /  Change )

Cancel

Connecting to %s

%d bloggers like this: