It was not at all what they expected. Two different families. Two different towns. Two different times. But the one thing they had in common was the news the doctors presented to them, “your child will likely have multiple abnormalities and may live no longer than a couple of hours once born.”
Linda was 22 when she met her mother for the first time. As a 17 year old unwed pregnant girl, Linda’s mother was encouraged to give her baby up for adoption which Linda has never felt bitter about, but instead is grateful for life that her mother gave her.
After finding it difficult to fall pregnant and after two miscarriages, in 2001 Linda and her husband Kevin welcomed a baby girl into the world, the beautiful Alyse. The couple were so elated at her birth that they decided they were happy to have only one child and didn’t try for another.
To their surprise, they were delighted to find that, in 2005, Linda was expecting their second child. However, this pregnancy was fraught with trials as Linda has epilepsy and the medication she was on could be detrimental to their unborn child.
“The doctors strongly recommended I terminate the pregnancy,” says Linda. “They listed the things that could go wrong for her which included spina-bifida and chromosomal abnormalities. Then they told us that even if she survives the pregnancy, she would likely be stillborn or only live for a couple of hours, two days at the most.”
Although Kevin and Linda would not consider a termination, Kevin struggled with the prospect of losing another child and the emotional pain that would cause them. They decided together that whatever length of time this child had, they wanted to meet her and hold her for however long that may be.
A few months later, their baby girl, Brooke was born. She was a picture of health. She is now a beautiful healthy ten year old with a gentle heart, who loves making friends and spending time with her big sister.
“We just love her so much,” says Linda, “we couldn’t imagine life without her. If I had given into fear and done what the doctors had suggested, we would have missed out on so much. Instead, I felt a peace throughout the entire pregnancy that whatever God had planned for her was going to be perfect.”
Glen and Tracey had a similar beginning, but their story was to take a twist that would affect their lives forever, some may see it as a negative, but if you know Jemimah, you understand the blessing she has been to their family.
When Tracey was 20 weeks pregnant, they discovered that their seventh baby would have some serious problems. They knew something was wrong during the scan, as the feeling in the room was different from the scans they had had with their other children. The doctors, who were usually chatty, were silent and kept leaving the room. At the end of the visit they left Glen and Tracey by themselves for half an hour before they told them they could leave.
Knowing something was not right but not knowing what that was, Glen and Tracey decided that, instead of having the reports sent straight to the doctor, they would pick them up for themselves. When they read the report, the words ‘multiple foetal abnormalities’ cut through them like a knife, confirming the unrest that they had felt within themselves.
“It was the worst moment of our lives,” says Tracey, “we had to tell the kids straight away, as they would know something was wrong. We couldn’t hide it.”
That night Tracey couldn’t sleep so she prayed. She remembered a phrase that had come to her a couple of years earlier, ‘what we plan is our gift to God, what is unplanned is God’s gift to us’.
She wrote down many other helpful things that came to her that night, the final one being ‘although it’s not wrapped the way you expected, this is a gift to you, an awesome gift from God’. Tracey then put down her pen and slept soundly, not realising how many times she would return to her writings for strength in the days that followed.
They were able to make an appointment with their doctor the very next day which was usually very difficult to do. It was suggested that their baby would be born with Down’s syndrome, heart problems, and swelling in the ventricles of the brain.
The doctor was able to arrange for them to see some good specialists in Brisbane who were able to find out a bit more about their baby before her birth. There were many more tears and confusion in the days to come but before long, the day of Jemimah’s birth arrived.
It was touch and go there for a while. The doctors weren’t sure how long she would live, but Jemimah was a fighter and surprised them all. It wasn’t going to be an easy ride for her though.
A tiny 2kg little girl had entered the world but there were definitely no manuals to help anyone know what Jemimah’s future was going to look like.
She had been diagnosed with a duplication of the 22nd chromosome which is different to Down’s Syndrome. So different in fact, that there is unlikely to be anyone with an exact match of her duplication and each case brings different symptoms. This was going to be a learning game for Glen and Tracey and also for the doctors.
Severely deaf, Jemimah was treated on an individual basis as all of her symptoms were unique and the nature of her condition couldn’t be predicted. They didn’t know whether she would ever talk, walk or read, how much she could be expected to improve or what her life expectancy would be. It is a day by day journey and every achievement is precious.
“We have growth parties,” says Glen, “the kids love it because whenever Jemimah puts on a kilogram, we all eat pizza. It’s a great time of celebration because it takes such effort to add weight to her.”
Jemimah had to be fed through a tube for the first two and a half years of her life. Learning how to insert the tube was one of the major adjustments for Glen and Tracey who had to travel to the hospital every time it fell out, even if it was at three in the morning.
They eventually learnt how to insert the tube themselves but were very nervous, for if it was inserted incorrectly, it could be fatal. They eventually became very good at being able to tube feed Jemimah even in difficult places, which gave them the ability to travel a bit more. Even the children knew how to hold the bag in the right position to get the calories into her.
Jemimah has also had to work hard at learning to sit. It was a tremendous achievement for her. She has had a team of Physiotherapists, occupational therapists and speech pathologists who have been wonderful with her and very supportive.
“We’ve learnt not to take anything for granted,” says Tracey, “we see things differently and all of life takes on an extra glow because everything is a bit more special. We still look at her and think how amazing it is that she can sit. You don’t know at the time, if she’s ever going to be able to do it.”
Glen and Tracey have had to adjust their lives dramatically to care for Jemimah but say that they have never felt resentment or robbed, because she brings so much joy into their lives.
“What we work so hard to do, she just naturally has,” says Tracey as she casts a motherly smile towards Jemimah. “She cuts through walls that people put up, she softens hearts because she is uninhibited and hugs people. She loves to give love.”
Jemimah’s name came from the book of Job in the Bible. Job had three daughters who were the most beautiful in the land, and to Glen and Tracey, so is their Jemimah.
As Jemimah lay on the floor giggling at my shoe buckle, Tracey went on to tell me about this gift of love that they had been given. A little girl who knows how to break through barriers, who looks at you intently and reaches her arms out to hug you. A little girl who touches the hearts of strangers so much that they return with gifts for her. A little girl who has changed hearts and minds about what it is to be disabled and all without being able to speak.
“How can we say what the best plan is for our lives?” says Tracey, “She’s one of the best things that has ever happened to us.”
As one nurse sat playing with Jemimah on the floor, she asked Tracey if she had ever thought of terminating her during pregnancy. Tracey replied, “stop what you’re doing and look at her.” Then she realised what she was asking them to give up.
Blessings find themselves in the least expected of places, and it’s often the ones that surprise us that impact us the most. As one mother once said to me when faced with a similar situation, “Who are we to say this child is not good enough for our family?”
What we learn from these things cannot be manufactured or found in a book. It is in the experience of knowing someone that we find such gems. These two families are glad they took the chance and are grateful for the lives they have been given.
First published in the Goodlife Magazine, Winter 2014
(c) Rebecca Moore 2014