We celebrated Alan's 71st birthday yesterday! Both girls helped to make his cake (a very messy but fun time). Ailsa picked red for the frosting but once I put some food dye in and she saw a pretty dark pink colour, she wanted me to leave it that way. So we celebrated Zoe and Ailsa style with a pretty pink cake with pink candles :)
Zoe continues to have a lot of junk in her lungs. She has been doing great this winter with fighting things off and staying out of hospital. We continue to do daily chest physio that loosens up some of that gunk so she can cough it out. People with low muscle tone have a hard time clearing the mucus from their lungs which is why they end up with pneumonias. And the pneumonias usually take a while to clear up. Now that Zoe is a little stronger, she has what they call a productive cough- she can clear some of that mucus out of her lungs. She does not like chest physio but she knows she feels better afterwards and when I said, "Do we give you chest physio because we are mean?" She said "No". "Is it because we love you and we want to help your body stay as healthy as it can?" She said, "Yes." Zoe fights us less than she used to now that she understands why we are smacking her back for 5 mins straight on each side.
It Takes a Village- More Thoughts
I have been thinking more about this new nurse coming in to our lives. We have accepted that it takes many people to care for Zoe in a way that allows her to participate fully in her life. With everything going on in our lives these past two years we have needed a lot of extra help. I wish we were at a place where we could say, "Thanks for the help, we are ok to do it on our own now." However, anyone with children know how exhausting caring for another person is. And anyone with a child like Zoe knows there is no way to take care of her on your own for very long. You need help. We accept this fact.
What Happens When the People are Constantly in Flux?
I begin to worry about the long term effect having people constantly coming and going has on Zoe and Ailsa. Yes, change is a constant in life. Teachers change at school, friends change as years go by, etc. However, we try to provide a stable and safe place for the girls at home. Since our life has been full of change, we try to maintain some impression of stability. We try to make sure the girls know the home is always a safe place, we are always here to take care of them, they can be/feel any way they need/want at home. But how do you maintain this feeling of acceptance, peace and stability if we have to have people in our home who may not always care for the children the way we do? With respite workers, we interview and chose who we want to be a part of our lives. With nurses, we don't have as much choice. If a nurse is definitely not going to work out (and we have had our fair share of these) then we can ask for a new nurse. However, if a nurse is ok and will get the job done, we find ourselves integrating a new person in to our lives. Sometimes this is a smooth transition, sometimes it takes some adjustments over time.
We have had some wonderful people come in to our home. And some others have not been a great experience (nurses who insist on treating Zoe like a baby and not allowing her the independence she deserves, a nurse who stole from us, a nurse who told me we should not allow Zoe to go outside because children like her should stay hidden away). We always explain to Zoe why that person was wrong and that they are not returning to our home. Zoe is pretty easy going and takes it all in stride. But this time, both girls are reacting in a way that says, "Not again. Can't we just have more family time?" We, as parents, are put in a spot of deciding whether to say no thank you to help and possibly lose the funding or putting up with another person who may not be a perfect fit. Losing the funding is not an option- we need this support. We are not sure whether Gavin will relapse with meningitis again. I continue to have medical issues. Thankfully Alan/Grandad is always willing to help out. However, we want him to have time just to be a grandad. To play with and spoil the girls like a grandparent should. So we try not to put him in the role of caregiver too much.
At this point in time we will try out this new nurse a few more times and see how the fit is. We wish the great nurses that come in to our life could just stay in this job forever. But people need to grow and change and do what is best for them.
We Are Lucky
Just to be clear, I recognise how incredibly lucky we are to have so much support. I see many parents struggle because they do not get enough support from their government, insurance companies, family, etc. Most people who have a child with special needs has a limited amount of money to spend on the many things these children need. And so a parent is forced to choose between medications, therapy, medical equipment, or respite. Usually, respite is the first thing to go.
It is only because things have been calm (meaning no one has been in hospital for the past month) that we even have the luxury of having these thoughts. When one of us is sick, we take whatever help we can get. I just want to be sure that we have the big picture in mind when making these every day decisions. We want the girls to be as independent, confident, sensitive, caring, strong and wonderful as they can be and we want to surround ourselves with people who support us.
Burial at Sea
2 weeks ago