It’s More Complicated Than That, Jasmine’s Story

  • By Tess Tallman Springible Contributor
  • Reading Time About 8 minutes
  • PostedOctober 9, 2018
  • Category

I’m Jasmine, author and blogger of Pretty Downs Blessed. I have a lovely partner Greg and three beautiful children. Ewan (9), Jenson (3) and Elliana (1).

I expect we look like a happy family of five, but it’s more complicated than that. Ewan is my stepson from Greg’s first marriage, Jenson and Elliana are ours, but Jenson has a speech delay and Sensory Processing Disorder and Elliana had a post-natal diagnosis of Down Syndrome.

We’ve had our ups and downs and when Jenson developed his behavioral difficulties we decided to not have any more children. The two boys were enough to keep us busy and we thought we were just starting to achieve a good balance. Gregory had a demanding job as a Software Consultant and I was planning to go back to my career in law. But then we fell for Elliana unexpectedly.

Elliana was born after a horrific pregnancy, I suffered from hyperemesis gravidarium and had to be frequently hospitalized for hydrating drips and drugs. I also went into labour from 22 weeks, it was a struggle to keep her inside and safe. She scared us a fair few times and we nearly lost her.

We were heavily monitored during my pregnancy, Elliana’s growth started to slow, and her movements were reduced so I was induced at 37 weeks.

Elliana’s birth was fast, our midwife stepped out for a sandwich and didn’t have time to put on her gloves before catching my little one!

I was able to hold Elliana straight away, she was put onto my chest and I looked into her eyes and I felt the sharpest tug of love. Her eyes were a deep blue and she had such a wise expression, it was almost as if she looked straight into my heart and accepted me as I was and loved me anyway. From my perspective there was no sign at this point of Downs Syndrome.

She was cold, so she was placed in a hot cot whilst I got cleaned up. Things so far had been as I had experienced with my first and were as I expected. But then things started to feel different, and you could feel the atmosphere shift in the room.

Many different medical professionals had started to come into the room and started examining my daughter. They never spoke to us or explained anything, this was frightening as we had not been moved out of the labour room and no one was consulting us.

I eventually asked one of the Junior Doctors what was going on and why they were so interested in my daughter. They replied that she had a long tongue, so they were seeking the Senior Consultant’s opinion. I was confused, why should they be concerned with a long tongue? Was she critically ill? Did she have a tongue tie? Was there something wrong with her?

I tried to ask them to clarify more but they wouldn’t answer any of my other questions or give me any more information.

Eventually the Senior Consultant came in and examined my daughter. By this time, my panic levels had spiraled, and I was on edge expecting the worst to happen. No one was telling me anything, no one was explaining anything to me. My perfect baby girl had something wrong with her, she wasn’t perfect.

The Senior Consultant came over and crouched down in front of myself and my partner and said words which still haunt me now. ‘I have examined your daughter and I believe that she has Downs Syndrome’.

My world fell apart, I had hoped that all this fuss would prove to be a storm in a tea cup, just the medical professionals being a bit too thorough. But with those words confirmed my worst fears.

In that moment, it felt like my baby had died. It is a very strange thing to grieve for a child, but to have a healthy child in your arms.  

I was filled with so much negativity, but mostly fear and guilt. I was afraid for Elliana and what her life would be and for the suffering I was sure she would face. I was afraid for my two boys at home, that I had burdened them for the rest of their lives. Mostly I was afraid for what the future held for my relationship with Gregory and for us as a family. I couldn’t see a way that we could be happy, and I felt such overwhelming guilt that I must have done something terribly wrong to have this happen to us.

I felt that I had lost my bond with Elliana and I felt useless as a Mother that I could feel this way towards my own child. I loved her, and I still cared for her, but that magical promise I had felt when she was born seemed to have died with the idea of the baby I thought she would be.

The diagnosis was confirmed a week later by blood test, and we stayed in hospital whilst this was being done so Elliana could be thoroughly checked over. I became afraid that they were going to try and take her from me, so I made sure that all tests were carried out in my presence.

All the staff were shocked, I had gotten to know most of the staff intimately as I had had my son at the hospital as well as being admitted so much during my pregnancies. Many people asked if we had had ‘the test’. Yes, we did, but our ‘risk’ was so low that we joked about it. We were so heavily monitored throughout this pregnancy that it seemed inconceivable to everyone that we were the percentage that fell through the net.

When we were released from the hospital, we went home to our other children and our families. I had made tearful phone calls from the delivery room and our families rallied around, they accepted Elliana without question and assured us she would be loved no matter what. When our families met her, they adored her instantly and loved her more fiercely because she had Downs Syndrome.

This past year has been tough, we have had to quickly learn about Downs Syndrome and conditions which can stem from it. I have had to learn the different professionals who are involved with Elliana, different therapies and techniques for her development as well as a whole new routine to make sure her fragile immune system does not become overwhelmed. We have had a couple of hospital stays, but we hope to keep those to a minimum.

But overall, surprisingly the year has been very upbeat. Jenson and Elliana had a rocky start, Jenson was very possessive of me and jealous at having to share my attention. However, through being in touch with medical professionals with Elliana we have been able to get Jenson the extra help he needed. He has shown great strength this year as he has worked to develop his speech and to learn coping strategies for when he becomes overwhelmed. He is now showing the world the cheeky little boy that was always there. Greg and I were worried Ewan may find having a disabled sibling difficult as he is older and has more understanding of the situation, but he has made us very proud by accepting Elliana without question and loving her fiercely. Both boys are now her best friends and biggest defenders and she adores the bones off of them both.

Elliana herself is a marvel, she has defied all the odds to be saying a few words, being able to sit, roll and shuffle her way around. She is the light in our family, she has an innate goodness which shines through and everyone she meets falls in love with her. She has the sweetest nature mixed with a whole lot of sass which shows me that she will be just fine.

Downs Syndrome has so much fear built around it, I am guilty of that when we first received the news. But Elliana has taught us that your family doesn’t have to be ‘normal’ to be happy. And what is normal anyway? It’s a fantasy that you are shown which in most cases will be unachievable, life has a way of surprising you. Elliana was our surprise, and she has been the best one.

Since having her I have decided to stay at home and to try and get our story out there. I am currently writing a book about our experiences, I have started a blog and I have become involved in charity work. She has helped me refocus my life and made me a better person.

I won’t ever forget how I felt when Elliana was born, but with every lovely smile and cheeky giggle she gives me, it seems less important than the reality of my daughter safe and sound in my arms. Elliana has shown me that Downs Syndrome does not define her and that is the true beauty of Downs Syndrome.  

— Jasmine Roberts, Springible Contributor