Harper’s Story
Kimberley shares the story of her daughter Harper who was born with an unknown life limiting illness. Harper is now 20 months old and her mother shares advice on how she coped in the early days of unknown illness and what her family do to make precious memories and embrace every moment with Harper.
I will never forget the moment we were told that our perfect little daughter only had months to live. I was frozen, numb and in complete shock. It was the last thing we ever expected her doctors to tell us.
Harper was born at full-term on the 1st of July 2019 after a perfect easy pregnancy. Due to her quick entrance, we stayed in the Neonatal Intensive Care Unit (NICU) for a week after she was born. When we finally got to take Harper home, our lives were so full of love and happiness. We were in absolute bliss and over the moon to be first-time parents.
Fighting for Harper
At around two months old, we started noticing that Harper wasn’t meeting her milestones. She was extremely floppy and was screaming and crying all day and night. We kept taking her to the GP insisting that something was must be wrong but were constantly told not to worry as every baby develops differently and crying is normal.
We finally got to see a paediatrician when Harper was four months old. As soon as she saw Harper she was instantly concerned and immediately organised a week-long stay at Queensland Children’s Hospital in order to run tests and hopefully get some answers. During our stay there, frustratingly, every new specialist we met told us the same, that she was perfect, and nothing was wrong.
A reason that raised more questions than answers
The final test was an MRI. When the doctors came in to give us the results, we knew by the looks on their faces that it wasn’t good news. The MRI showed that Harper’s brain was slightly smaller than it should be. This was the reason why her movements were slow; her vision was impaired, and her abilities were regressing. The doctors said that while it was not life-threatening, she would need a lot of assistance throughout her life. Although we finally had a reason, it did not give us any answers.
We constantly found ourselves on Google, asking questions without answers. For example, asking ‘how to encourage my child to bring her hands to her mouth’ and instead finding ways to do the exact opposite.
The news was devastating. We were heartbroken for our beautiful, perfect little Harper. During this dark time, I was truly grateful and appreciative of the support from the doctors. They reassured us that we had not done anything wrong, and that it could not have been prevented. We left with a plan to further test Harper’s DNA to find answers, a follow-up MRI in six months, and a beautiful poem called “Welcome to Holland” about embracing the new path that we would travel.
During the next six months, we focused on building Harper’s strength and abilities, in any way that we could. There were countless appointments with physiotherapists, speech and occupational therapists. We quickly realised there were no parenting books or advice that we could follow. We had to learn and discover new ways to interact, communicate and play.
We constantly found ourselves on Google, asking questions without answers. For example, asking ‘how to encourage my child to bring her hands to her mouth’ and instead finding ways to do the exact opposite. It was very clear that Harper was writing her own set of rules, and the answers would not be so easily available.
I took our perfect little Harper home and didn’t let her out of my arms for the next two weeks.
Trying to fit in left us more isolated than ever
As Harper grew, we looked for normal activities that she could participate in with her peers. This is where we began to encounter the struggles and judgements that come with having a child with different abilities. I wanted to take Harper to swimming lessons because other kids her age were enrolling in classes too. We found a local swim school and took Harper to her first lesson. I was not prepared for what happened there. It was the first time I truly felt excluded.
The other parents looked at us like we were terrible parents because our daughter was behind developmentally. Harper was looked at like she was less-than all the other babies there. This was beyond disheartening. Unable to find inclusive activities or places and not knowing any other families going through a similar journey, we felt isolated. In the end, the six months was spent mainly keeping to ourselves and our family.
Life changing news
Harper was changing drastically with the passing of time, both positively and negatively. While she seemed to be getting stronger and slowly progressing with her abilities, at 10 months old, she started having tonic-clonic seizures and was struggling more to eat and drink. Even through these changes, we were hopeful ahead of our second meeting with her doctors.
The follow-up MRI showed that Harper’s brain had atrophied, becoming much smaller, in a short period of time. The prognosis now was that she had months to live. We were in disbelief, utter shock and sadness. Not only were we facing the unthinkable, but the doctors were not able to give us any advice or roadmap as to what to expect in the coming days or months.
The cause of her condition was still unknown as all of her DNA and other testing was returning normal results. All we could do was accept a referral for palliative care and try to make the most of every day, focusing on making memories. I took our perfect little Harper home and didn’t let her out of my arms for the next two weeks.
We agreed that there will be time to grieve one day, but while Harper is still here with us, we want to be present and make sure the only thing she knows in life is love and happiness.
While trying to come to terms with our new reality, my husband and I spent the first couple of weeks allowing ourselves to go through the feelings of shock and sadness. After that, we decided together that, as hard as it would be, we would not grieve while she was still alive. We agreed that there will be time to grieve one day, but while Harper is still here with us, we want to be present and make sure the only thing she knows in life is love and happiness.
From sadness to making memories
- We booked our first family holiday and then went on many family adventures
- We got family photos taken
- We took Harper to visit to all our special places like where we got married and our favourite beaches
- We took her on a helicopter ride
- We made casts of her hands and feet
We changed our approach and mindset. Harper’s development was not the main goal anymore, instead we had fun, and cherished the simple things like watching Disney movies and cuddling together on the couch. These little moments became the big moments.
Harper is now 20 months old and approaching her second birthday. She still tries hard but has regressed in many ways. She is predominantly fed through her nasogastric tube, takes multiple medications to help control seizures and secretions and continues with various ongoing therapies to help with her muscles and movement.
Even though she is small, Harper has had a big impact on everyone she has met. She has taught us patience, kindness and the value of inclusivity.
Hope and inclusion do exist
Over time, we were eventually able to find inclusive communities that welcomed our family with open arms. This was life changing for us and helped us in many ways. We no longer felt isolated.
Harper attends a weekly playgroup at Narbethong Special School, a school for children with vision impairment. She can play freely with kids her age and participate in fun activities. This playgroup was the first place we truly felt welcomed. I will always be so grateful for the beautiful people there. Through our stay at the Hummingbird House, Queensland’s only children’s hospice, we have also met many families on a similar path. Harper has taught us so much including the importance of having inclusive community support.
Even though she is small, Harper has had a big impact on everyone she has met. She has taught us patience, kindness and the value of inclusivity. We no longer get upset over the sleepless nights, because we appreciate the extra time we get to spend with her.
We don’t get frustrated when she won’t sleep in her cot, because we cherish the cuddles and closeness of letting her sleep on top of us.
We aren’t craving that five-minute break to ourselves, because all we want is to spend as much time together as a family as we can. For us, the future is unknown. We still don’t have any answers as to why this is happening to Harper. What gets us through the tough days are her cheeky little smiles and knowing that all she knows in life is love and happiness.
Finding other people who were going through similar situations helped us out a lot as it made us feel a lot less isolated and like we weren’t the only ones going through this situation.