“This is our beautiful daughter Jenna Grace Blom. Her journey with us began the day she was born, 23rd of June, 2006 and her story starts with her early birth, a month before her due date.
It was discovered there was no fluid around her so I was rushed in for an emergency C-section, this in itself was traumatic as the pregnancy had been just like my other two, nothing to report and I felt great! I remember fretting that she was going to be a prem baby and the stories I’d heard and was she going to be healthy?
That was nothing compared to the total shock an hour after she was born. I remember the nurse and midwife having a heated discussion once she’d been delivered and thought it a little strange but I was just so happy to see my little girl with 10 fingers and 10 toes!
They whisked her off to NICU and I was taken into recovery. I was euphoric, I had my little girl! I have two sons so it was such a gift to finally have the daughter I’d dreamed off, I’d already day dreamed about the girlie days, shopping, lunching…
The specialist came to visit my husband and I once I was in my room, and his words brought our world crashing down. “We believe your daughter has Trisomy 21 (Down Syndrome) we will require a blood test to confirm but I wouldn’t tell you unless I was 100% sure.”
I felt so stunned, surely this wasn’t real. This happened to other people, not me, not my family! This isn’t what we had planned. My heart ached…we felt robbed, we didn’t ring friends and family and gleefully announce the arrival of our new baby girl, we sat together and cried, I thought of my two beautiful boys and what this meant for them, what would their lives be like now? Would they suffer because my time and energy would be spent looking after a special needs child?
At birth Jenna was diagnosed with dual cataracts and an ASD, so at six weeks old her and I went off by ambulance to Greenlane Hospital where they removed the cataracts and lenses from behind her eyes and told us we would have specially made contact lenses that we would need to put into both her eyes and take out to clean once a week. If you have contacts as an adult you know the struggle now imagine a premature baby at six weeks old and trying to get tiny bits of silicone in and out of her eyes.
We seemed to have endless hospital appointments for eyes, heart, paediatricians… Some days it was overwhelming but we managed. Then the news that her ASD had grown and would need to be fixed, while waiting for the operation, our baby girl at nine months old was rushed to Starship with what I initially thought was a tummy bug only to be diagnosed type one diabetic.
I wanted to know who was testing my family and I? What had we done that our baby was to be repeatedly punished? Did she not have enough in life to deal with? So this mum with a phobia of needles had to learn all about insulin, blood sugars and what to do with lows and highs.
Type one diabetes cannot be cured. Our family runs our days around Jenna’s blood sugars and trying to maintain as normal as possible life for her. She is mainstreamed at school and we are blessed with an amazing support network of teacher aides, teaching staff and office staff that know what to look for if she’s low or high, they ring me every lunch with a blood sugar and then administer her insulin before she eats. We as a family couldn’t get by without the village of people we have that pick us up when we fall down and protect, love and adore Jenna.
At 12 months old Jenna went in for major heart surgery, so incredibly frightening to walk into PICU and see this tiny dot in the middle of a big hospital bed with wires and plugs and bleeps and beeps and IV’s coming from everywhere, not to mention the 10 doctors all standing round her bed as she was a case study – so to speak to them as it was very unusual to have a nine month old down syndrome child that had no genetic family history of diabetes. But again, we managed, and so did Jenna.
A few months after surgery clumps of Jenna’s hair started to fall out, was it the drugs from the surgery? Something to do with diabetes? What now? And this is where I learnt the word alopecia. Jenna has permanent hair loss, her hair will not grow back, we’ve had no hair for nine years now.
I relate to this so well: You thought you were going to Hawaii with all your friends, you’d packed your bags, checked out the sights online, you and all your friends were excited but you got to the airport and you were told no, you were in fact going to Iceland, but you didn’t know anything about Iceland and all your friends were going to Hawaii??? Why must you go on this journey by yourself? That’s not fair. But you got to Iceland and you LOVED it, it was different yes, but it was beautiful and exciting and you learnt so many things you never realised, and made friends you would never had made if you’d gone to Hawaii.
This is the journey of a child with Down Syndrome, it’s not the journey I chose, but I do love my little tour guide I wouldn’t change it, not in a heartbeat.
We don’t hold pity parties, we celebrate that we were given a little girl that has made us some amazing new friends we would have never met if we hadn’t of had her, we celebrate that she has taught our family empathy to others. She has taught us that through all the operations, hospital visits and pain, a smile is the best medicine in the world. Her laugh is infectious; she brings joy to all around her. She never judges anyone, she loves every person she meets and she teaches every person she meets what pure happiness is.
Our family is stronger because of this little girl, our family is more enriched because of this little girl, we are the lucky ones! We don’t look back, we look forward, we look at each day as a new day for Jenna to accomplish something different to surprise us with her mile stones and to give us her love.
Jenna is the baby sister to Tyler (21) and Kalem (17), she is a daughter to me Tracy and her daddy Darryl.”
– Darryl and Tracy, Jenna’s parents