Charlotte’s Story - Part 2

It's been 2 years since I wrote our first post on Miracle Moon. A lot as happened, and yet, not much has happened too. Charlotte is now almost 3 years old and is weighing 13.5kg. She is at the brink of going into 3-4 year clothing and that blows my mind!

With Charlotte getting older, we are facing difficulty with accessibility. She is becoming too heavy to just lift anywhere, baby changing tables are becoming too small and if there are stairs- well, forget it. We now have an adapted pram, which is incredibly heavy. Even getting through doorways can be a struggle if we have the oxygen with us. It feels like the world is getting smaller and less accessible already. Hoists and WAVs are in the not too distant future.

As we pass further milestones with little progress towards them, we have had a standing frame and postural support seating introduced. We are supposed to use them daily but realistically, we use them every few days maybe. It's another thing to consider when travelling for a long time. Charlotte's cerebral palsy means she is at risk of contractures, scoliosis and hip dislocation and supporting her posturally can help prevent or improve this going forward.

Another big step is coming up next year, with her first school year. We know she will need to go to a specialist school, in fact, we are going to keep her at the conductive education school she is at. A bittersweet moment for most parents, I am SO excited to get her into a uniform and off to school. A moment we never even knew could be ours. But, it is a year away, and let's not jinx it.

A lot of our life lately has been preoccupied with anticipatory grief, seeing so many beautiful little souls leaving this earth too soon. The battles we face now are mental, guilt that we are not doing enough therapies and helping Charlotte physically, and the knowledge that when the time comes, who cares about therapy, memories and experiences are far more important to us.

We have had some wonderful progress too recently, with Charlotte's vision improving a lot, her responses becoming consistent and her communication attempts. Although nowhere near an eye gaze standard or even BSL or makaton, she does now lift her hand to say hello and vocalises to make choices.

Health wise, she is doing okay. We had PEG surgery last year and that helped a lot with her chest. She is also on CPAP overnight to help her airways. She has a floppy airway (not uncommon with her condition) and mild obstructive apnea. She has very large tonsils now though which also need removed. The tracheostomy conversation has almost started a couple times, but our respiratory consultant said she wouldn't be a candidate he would consider because her quality of life isn't good enough. This has obviously led to a bit of contention and a bit more focus on who gets to decide. As much as we trust and love our medical team, the longer you are within this life, the more you see, the less you trust. I think that's common amongst medical parents. That being said though, we have people we do trust and it's important to work on that connection. You will find people who will talk at you till you agree without explaining anything but there are others (nurses!) Who will listen and help you advocate so always speak up and if you're upset or worried then tell someone.

We had an emergency health care plan drawn up too to let people know if we would want Charlotte resuscitated or not. That was horrible. Although we are lucky that since birth, she has not needed resuscitated or intubated again. Another part of complex medical life is making decisions about your child's best interests and maybe one day, we will need to make another decision. But it is not today.

Mentally, I am doing much better. I take things day by day and most of the time I don't bother with "what ifs". That isn't my life, this is. We still need to make bigger efforts to do things, but they're worth doing.

I've been carving out a lot of time for me, playing music, doing exercise classes and every couple of months I book a weekend away, alone, to hike and read. We have supportive family too and my MIL has learned how to take care of Charlotte so my fiance and I can have date nights occasionally which is lovely.

Most people have been lovely too. We have a lot of people telling us about their family member with complex needs and it's clear how loved they are. Some people do still ask us "what's wrong with her?" But I know it comes from a place of wanting to learn so I don't get offended. As she gets older it's more obvious she is disabled and we don't shy away from it. It's part of who she is and part of our lives. I've learned so much from Charlotte and so much from our friends experiences too and I would never change a thing about it. Some days are hard but overall, I see the joy in life and in the things I now get to do because I'm not in a lab all day. Every day is different and when Charlotte is well we get out as much as possible. I get to spend all day every day with my children and I will cherish that time as long as it lasts.

I think past Jen still had a lot to learn, to find her voice and really discuss how she feels. It can be difficult to find yourself again once you've been thrust into a sea of medical jargon and complex needs but it can be done. I've worked a lot on my finding my values and following them in life, no matter what way it goes or how far away from my "plan" it is.

Speaking to other medical parents has helped immensely too. They just get it.

In the future I'm hoping to start bringing Charlotte on more adventures, and continuing to not let disability keep us behind closed doors.