Laurie & Beccy
Caring for two “zebras”
Who are we?
We have 2 daughters – gorgeous, fun, interesting, smart and each deficient in a range of antibodies. They both have a primary immune deficiency, meaning they and us have lived the life of sick kids since the beginning. Laurie has CVID, meaning her body doesn’t make many antibodies, and Beccy has an (at this stage) unconfirmable diagnosis where she is low in some and ok in others. After months of bloods and waiting, the decision is “immune deficiency”. Beccy isn’t eligible for much with her “beccy-itis” diagnosis, living on prophylactic antibiotics at the moment. Laurie is on SCIG, weekly “goblin” replacement.
They both get sick, they both get fatigued, they both need days off school. Being PID kids they don’t take one day to get over something, we are talking 1-2 weeks each time. Many, many times a term.
We are their parents, so we are a bit the same, juggling autoimmune conditions of our own. This is another story, for another day.
What does it mean to care for these two nearly teenagers?
As parents who run a business and both work more than full time, the caring role takes priority. We spend the last day of school holidays working out who can work from home on what day so there is always a “plan A” for staying home when someone wakes up ill.
Our term starts with independent learning plan meetings scheduled for both girls – life is hard when you are in year 7 and had up to 6 weeks off school sick by Term 3. We spend loads of time talking with the extra-curricular staff too (Yes, I know your kids get sick too, but this is a little different!).
We have a roster with the local pharmacy for medication delivery.
Weekends are infusion for a few hours.
When this is organized we can then schedule in the specialists, the GP, therapists who help etc etc etc with school and planned absences.
Don’t forget the monthly run to the local hospital to pick up the plasma.
Oh, there is also the remote learning day on Thursdays because a whole working week is a lot when your body is constantly fighting a bug that no-one else has noticed….
What does it mean to care for children with PID?– parenting plus more, more often.
What helps?
- People around us understanding – life is ok often and tough sometimes.
- Enough money for take out sometimes, a cleaner, medicines and loads of panadol.
- We need people to look past the craft on the floor and unfolded laundry when they come over.
- We will miss events because someone is sick or tired or both – we need people to understand. This includes the ones we organized and are supposed to be at our house and cancelled at 4pm because someone became unwell.
- We need responsibility around us – don’t come to work or school if you are sick. Don’t come to us if you are sick ever.
- Oh, and home deliver your groceries.
- Have hobbies which can be done at home. An awesome TV and subscriptions to all of the online streaming options. Shall I tell you one day about our trivia knowledge of Disney? And our LEGO collection, who knew how big the shelves needed to be to hold the Expert Build Harry Potter Castle and the Disney Castle and the Ferris Wheel……
- Books, gaming devices, time as a family, cooking, gardening. Cats, dog. Fluffy blankets. Huge pyjama collection.
- All of the things you can do when you are home and resting and recovering and loving each other. Celebrate when everyone is well and enjoy.