Sometimes you've got to dig deep inside...

Recent experiences have prompted me to write this blog post, as after all I began this page to help other people like me. Those going through the ups and downs of raising a child with a disability. Over the last few months my emotions have somewhat spiralled and then last week I saw an instagram post by a lovely mum who also has a son with dwarfism.

She mentioned a lecture on ‘how parents of children with special needs experience cyclical periods of grief’ and this got me thinking.. is that what I have been going through? My understanding of this is that you generally feel fine and can see the positive in your situation, and everything seems to be going ok, however there will be periods of time where things don’t go smoothly and this can unintentionally reset the grieving process. It could be issues with doctors, struggling to create a successful work life balance or developmental roadblocks to name just a few, when you find yourself grieving all over again… and this spoke absolute volumes to me. Some of you may know that Callum’s last appointment left us feeling kind of shell shocked. We received the results from his first sleep study and after believing that they would be positive, we found out this wasn't the case.

There were times when his sats dipped but they came straight back up, and nothing further was said at the time. Plus his clinic appointment was two and a half months after his sleep study so naturally we thought if there were any problems we would have been called in sooner, but it seems we were wrong. Instead we were told that Callum has both obstructive and central sleep apnea. He has physical obstruction - possible from his tonsils/adenoids, and central apnea where his brain isn't effectively instructing his body to breath when he is asleep. We we’re told he would be referred to the ENT department for further checks and it was possible his tonsils and/or adenoids would be scheduled for removal. He will also have a second MRI and another sleep study - and if the results don’t improve there is a possibility for decompression surgery to widen the gap at the base of his skull where his brain and spinal cord meet.

On a separate topic we were also told that his kyphosis (curvature of the spine which previously didn’t appear to be a problem) may need operating on should it not pull back in once he is walking. Understandably that was a lot to take in but I felt like I needed to be strong. Strong for Callum, for Damion, for our families, and for myself. I couldn’t hit the panic button and so I shelved the feelings and told myself let’s take it a day at a time and see what the ENT referral brings. But it wasn't that straight forward. Weeks went by and no referral was received. We then received an appointment for April - five months after his clinic appointment and seven months after his sleep study. I was shocked and annoyed. I had been told that my son struggles to breath when he sleeps and yet we would have to wait seven months just to see how big his tonsils and adenoids were, let alone operate to remove them. We needed this appointment to happen so that his MRI and sleep study could be scheduled before his next clinic in June/July so naturally I pushed for an earlier appointment and we now have one in February, which is a little better at least. On top of this his first orthopaedic appointment was cancelled and rescheduled four times - bouncing back and forth from January to March, and I was unsuccessfully attempting to get a more supportive chair to protect his kyphosis. We were referred to two more clinic, opcare for shoes and speech and language, and I felt like everything was spiralling out of my control.

We also moved house which only added to the stress, and I was trying to do everything in my power to provide Callum with the support he needed but nothing I did felt adequate. To add to this I was also worried about my job. After returning from maternity leave I was using my annual leave to go to Callum’s appointments and I knew as we approached the new year I wouldn’t be able to continue this way. My work life balance was completely out of sync and I felt like I was constantly treading water trying to please everyone. I was getting bug after bug, with a mouth infection that lasted over a month, and my hair was starting to fall out from the stress. I was unpredictably emotional and the cracks were certainly starting to show. I knew something had to stop. I had to remind myself that Callum was happy and, as far as I knew, he was healthy and I had to start being kinder to myself. I am not superwoman. The Christmas break helped me to reset and recharge and as we entered January I felt refreshed and ready to tackle it all head on. Then I saw that post and it all seemed to click into place. I understood that I had simply been reacting to all of those things. Issues with the doctors, my work life balance and development roadblocks. The important thing that I want to stress to you all is that all of this is completely normal and part of the grieving process. It always sounds so weird to say I'm grieving when my son is very much alive, but it’s not him that I am grieving. It’s the feeling of upset at the difficulty he faces now and in the future and the loss of normalcy and the expectation of what's to come. To take care of Callum, I must first take care of myself. I tell everyone that will listen that the community I have found myself in is absolutely amazing and I am so thankful to be surrounded by such incredible people. I am grateful for the people that I have met, in the flesh and online, and the support I receive on an ongoing basis. The road ahead is going to be rocky, and I'm sure our path will go both up and down, but whilst my face may be brave the fight inside is burning.