The First Chapter with Ellie

The first chapter with Ellie is something I’ve wanted to write for a long time but it’s not a happy story to begin with and I’ve debated with myself often but have decided it is always best to be open and honest, so please do continue if you really want to hear the truth.

I was 33 when I got pregnant with Ellie, I thought I was young but understood my biological clock was ticking. I had the regular 12 and 20 week scan which were ‘normal’ and I think I was asked about a blood test (it’s vague) but was reassured it’s unusual for someone to have any problems, therefore I declined.

After a very short labour I was delighted, I have a baby girl ( we knew due to the scan) and we had a name already picked out, Eleanor. I recall, whilst being stitched, texting my friends the good news. I also remember vividly Jason (my husband) pointing out that she had a ‘flat head’, my mum reassured me it was nothing and I tried to breastfeed but it wasn’t happening. A few hours passed and I went to have a shower.

Upon return there was a pediatrician with a trainee examining our baby. I sat watching with Jason, as they appeared to be going through a checklist. Every few seconds, the pediatrician would turn to his trainee and, pointing to something on Eleanor, would declare “mongoloid”. Mongoloid, mongoloid, mongoloid, mongoloid, again and again and again, purely for the benefit of the trainee’s training, this eventually reduced Jason to tears, I knew something was wrong. After an eternity, the pediatrician turned to me and simply stated “Your child has Down Syndrome. Normal child is strong. Your child all floppy”. I looked bewildered, I had never heard of Down Syndrome and at this point Jason was sobbing so I knew it wasn’t good. I sobbed with him and all I could think of was this must be some type of a disability; I had a disabled child.

The nurses were polite and asked did we want to go onto the ward or have a private room. I asked for a private room. I won’t lie the next few hours involved lots of crying and actually realising I did not know what we were going to deal with. The only thing I do remember is everyone asking ‘Did you not have the blood test?’ I felt it really was all my fault.

After several hours a nurse asked if we had fed the baby, we hadn’t and she hadn’t even cried. We were advised how best to provide the bottle due to Ellie’s large tongue, Jason fed her as at this point as unfortunately, at that point, I felt no attachment. Jason was in charge of telling the family who were very supportive which made me cry even harder. I did not want a child with a disability. Without knowing and in hindsight I had a stereotype mindset of what a child with a disability was and the picture wasn’t a good one. I didn’t know if we could cope.

For three days we were in hospital to ensure Ellie, her new name, was feeding well. We had decided on day 2 to change her name as we felt that the journey we thought we were going on had vanished and were now on a new pathway. On this day, I asked for some literature about Down Syndrome so I could get my head around what I was dealing with. It wasn’t nice, it was an outdated literature that explained practically how many issues Ellie was going to have to deal with from heart issues to sight, hearing to name a few. I continued to cry.

By day three I had chatted to Jason about our options, what could we do, we discussed adoption and we discussed doing our best. We knew deep down we couldn’t do anything but have Ellie in our life even though it wasn’t what we had planned. Friends were supportive and some family members said ‘She doesn’t even look like she’s got it’.
We had to give blood tests at the hospital to confirm the diagnosis and I remember 100% the trainee taking the bloods saying ‘It could be 50/50 this’ and I clung to that hope.

By day three I was ready to go home, but we couldn’t unless Ellie had drank 50 ounces of milk. She finally did. Hooray! Jason picked us up and in the car I felt scared and alone, I had never had a baby, let alone one with Down Syndrome.

We were told we would get the results from the blood test on Friday, first thing that morning I was on the phone thinking ‘It could be a mistake, it might be Mosaic Down Syndrome’ ( which means there’s a mixture of cells affected by trisomy 21 ) and after several hours of anxiously waiting we finally got the call; the blood tests proved, Ellie has Down Syndrome.
I sobbed.

I tell this from truth and from memory. I had never heard of Down Syndrome. I was never given any positivity towards the disability. Jason had only seen a home from his early child hood days where people with Down Syndrome were kept away from society and he remembered it well. The future looked bleak but it isn’t.
Ten years on and Ellie is Ellie, she is my super hero and my pain in the bum. I certainly wish I had known back then what I know now. I wish the professionals had been more positive. I wish I had known and understood that people with Down Syndrome today are educated and included within society a lot more than they were back in the 1960s. I truly wish I could have celebrated Ellie’s birth way more than I did and that is why we go all out each and every birthday.

We really wouldn’t be without Ellie these days, she is our daughter, she teaches us so much each and every day. She is not a blessing; she is a young girl with her own mind and just needs a little extra help with her extra chromosome. Ellie has not only changed our lives but everyone she meets, we have been included in an extra special community that I did not know existed. I personally have learnt so much in these last ten years than I ever would have done without Ellie.

To Ellie, if you ever read this, I wanted to be honest to other parents to show them that all feelings, good and bad are human and allowable.
We love you more than you will ever know and go show the world what a truly extra special person you are.
Love mum & dad 🙂

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Comments

August 17, 2019 at 7:15 pm

It takes a very strong and brave person to be so honest. Thank you for sharing your story. Xx



August 17, 2019 at 7:26 pm

Ellie sounds just like her Mum, strong, passionate and she looks incredibly beautiful. Thank you for such an honest account of your first days with Your daughter xxx



August 17, 2019 at 8:17 pm

This is such a beautiful post. It must have been so hard to write, but not as hard as it was to process in the first place. I think even now, a lot of education needs to be done in terms of downs syndrome. Your little Ellie is just gorg 🙂



    SharonCrowley
    August 28, 2019 at 5:13 pm

    Thank you Lisa and you are correct, more needs doing and a lot of people, including myself are trying our hardest to help 🙂



August 17, 2019 at 8:40 pm

I can’t believe that your experience was like this ten years ago, I imagined that professionals would have been dealing with it so much better by then, this is how I imagined it would have been 20 or 30 years ago. You are so right that every emotional is allowable, you found out very suddenly that your parenting journey wouldn’t be how you expected and that would take anyone time to adjust to. Xx



Maxine Waith
August 24, 2019 at 7:06 am

My first memory of you was at Caths Bury DS fund raiser night. I could see just how emotional you were to this new world, has you danced with your friends, but also has the night went on… from the tears I could see your smiles and strength emerge and your hope for a bright future for Ellie has you danced with Amy a young adult with DS.
Your a strong passionate mummy bear it’s a pleasure to know you and your family xx



    SharonCrowley
    August 28, 2019 at 5:10 pm

    I remember the night well Maxine and thank you for taking the time to both read & comment and I truly appreciate your kind words xx



August 24, 2019 at 6:43 pm

Well done for sharing your story so bravely and honestly. It’s such a shame the doctors didn’t guide you on your new journey with more sensitivity, but at least your words are now helping others on their way. Xx



    SharonCrowley
    August 28, 2019 at 5:09 pm

    Thank you Anita and I appreciate your comments. There definitely needs to be more done from the medical profession but some are taking notice and making those changes which is great xx



August 28, 2019 at 10:59 pm

Beautifully written Sharon.

While I don’t know you other than your social media pages, I love following yours and Ellie’s story.
As a family unit you have pulled together and that is what any child needs. Ellie is blessed to have you in her corner and I can’t wait to see how her story unfolds. Xx



Marie
September 5, 2019 at 10:23 am

I have a 6 year old daughter with Down Syndrome and my experience is almost identical, from the ‘she doesn’t look like she’s got it’ comments, clinging onto hope with the blood test and that awful negative book to name a few. Thank you for sharing. Ellie is beautiful xx



September 27, 2019 at 2:03 am

I know this if off topic but I’m looking into starting my
own blog and was wondering what all is needed to get
setup? I’m assuming having a blog like yours would cost a pretty penny?
I’m not very internet smart so I’m not 100% positive.

Any suggestions or advice would be greatly appreciated.
Many thanks



Mandy Worsley
October 25, 2019 at 6:32 pm

One amazing mama with an amazing daughter changing the worlds perception of DS. Well done to you both for being amazing and sharing your world with us all so we can all have a better understanding.



sarah harrison
October 26, 2019 at 12:43 am

Sharon, From the first time i spoke to you nearly three years ago, I knew you were a honest person. The fact that you have decided to tell your story truthfully and without sticking the rose tinted glasses on can, and im sure will, help other parents with down syndrome children.
Ellie is a credit to you and Jason. I used to love watching her when she joined you on your FM training videos. I love how confident she is and that has to come down to how you and Jason are with her.
Keep doing what you are doing. Congratulations on all that you have achieved these last few months.
xxx



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