Finding her ‘brave’

“Living with pulmonary hypertension is hard and we know that supporting a child to live their best life with PH is even harder.  Every normal routine is affected and trying to keep to time is near impossible. 

Ask any of us; it feels like we are living in organised chaos every day and we wish we had the ars of an octopus.  But we never stop trying, fighting, supporting and encouraging to make sure our children live a near-to-normal, happy life.

We have been on our PH journey since 2018 with our five-year-old daughter Abbie, and it has been a bit of a rollercoaster since her diagnosis.  She also lives with severe scoliosis, lung disease and delayed physical development – to name a few. 

We still don’t know why she has the degree of PH that she does and since 2018 she has undertaken countless tests and scans to find a cause, but to no avail.  This means it could be a genetic cause and it also means that her PH will progress, get tricker to manage as she gets older, and could be life limiting.

We have locked that devastation in a little box in the back of our minds and now focus all our attention on hope for the future and making sure Abbie and her two older brothers are happy in their present lives – that they feel supported, and that Abbie has the emotional resilience to tackle what challenges life will bring her. 

We value our home life and the stability and safety net it gives to her, and we encourage the boys to join in with activities and clubs for their own wellbeing.  School, church and community youth and sports groups are all good influences in their lives.

So, she goes to mainstream school every day.  This is important to her and something we have valued as a great achievement. 

Our morning routine is unlike many doing the school run as she needs to be supported to get dressed, refasten her spinal body brace, toileted, medication given and encouraged to eat breakfast.  It all takes longer than normal as she needs to do everything at her pace. 

She also arrives at school with what feels like everything but the kitchen sink.  She brings with her school bags, medical bag, walking frame and powered wheelchair.  She is greeted by a teacher from her class when we arrive who gives her a welcoming ‘hello’ and she is helped into school, barely waving goodbye to me as she goes in. 

In school she also has a supportive chair, oxygen concentrator and access to an inclusive nurture room for when she gets a bit fatigued.  They also know to give me a call when she is struggling to manage so she never ends her day feeling like it was too much.  Her mental health is good because she has positive relationships with adults and children around her, she is encouraged to talk about how she feels, and takes part in school life as much as possible.

Attending many hospital appointments has just become another part of life. Abbie does find them upsetting and her fight mode will kick in despite the wonderful work of the doctors, nurses and play-therapists who try to make the experience easier for her.  She is well known in many hospitals in North Yorkshire and of course at Great Ormond Street.

We often look for our ‘brave’ before we step through the doors. We try to talk about being brave as something normal, something that we all have but sometimes we forget where we put it, so we have to go looking for it, like hide and seek.  She finds it funny when it was in her pocket the whole time!

On weekends and during holidays we try to keep our family experiences as normal as possible and are creative in how we figure out access for her.  We like to be out in the fresh air, so we go to places that are outdoors or that are accessible activities; places that we know she feels able to enjoy because it is familiar.

We take things with us, so she is able to rest and watch her brother Joey play football or cricket with Daddy, or enjoy the natural world around her.  Family time is important for us all, as we all do our share in helping Abbie to thrive, so we take the little wins as big celebrations and enjoy them.

Making sure her brothers get quality time is important too, so they often do things with Daddy like adventure walks, fishing or garden camping.  Looking after our wellbeing as a family is essential; although it can be difficult at times we remember to reflect in her strength and keep going.

Evenings are much the same as the mornings: time consuming and a little like military precision.  She takes nine different medications between teatime and bedtime, and she takes overnight oxygen to give her a boost for the next day. 

She needs help to get into the house, put her school things away, and read her book. She is helped to rest, encouraged to eat at teatime, carried up the stairs, supported in the bath and helped get ready for bed. 

Her big brother Freddie has taken on helping her brush her teeth for a school ‘toothbrush challenge’ and it has been a joy to watch them together.  Evenings can often get swept away with the routines, so when Abbie is finally in bed, we like to simply get comfy on the sofas together for a chat, a bedtime read or a sneaky bit of TV.  Friday nights are a more relaxed time, so we often play family charades which is one of Abbie’s favourite games.  She can do a great chicken impression!

We try to balance everything in our daily life, keeping up with appointments and managing her health needs; attending school and doing homework; prioritising family time and not being hard on ourselves if something doesn’t work out.  We are together on this journey; the up and the downs, for Abbie, because she is our little PHighter. When she smiles because she has managed to do something she didn’t think she could do, the world just seems to light up.  She is finding her brave.”