At the end of my last blog “10 Benefits to these *BLOODY* Boots’n’Bar” I wrote; “Maybe next time, I’ll post my top ten challenges with clubfoot.” A few parents replied with “yes please”, so here I am.
I urge you to consider this a 2-part-article.
The challenges blog must be read in conjunction with the benefits blog!
Right. Here we go…
1. The sometimes overwhelming fear of relapse. The thought that we will do everything we can to be the most compliant of compliant families, but that Zach will still end up in that very small percentage of people who need ongoing treatment for life.
2. Finding the balance between Clubfoot not being what defines Zach (or me as a Mummy), but being open and honest about his treatment. Zach cannot be described only as a child born with clubfoot, for he is soo much more than that. But to truly appreciate who he is, his Clubfeet – and the highs and lows that come with it – must be acknowledged.
3. Learning to take down my “mask”. I am comfortable talking about the endless positives we have gained and how well Zach does, but I have often felt uneasy admitting to the struggles. The irony of writing this blog, and in fact writing my book, is not lost on me. It has all been part of the process.
4. Oooh the nights. Yeah, they can be yucky. I often wonder if we might all get a little bit extra sleep when we’re done with these boots. Getting the boots on, for a start, can at times be downright exhausting – both physically and emotionally – and quite frankly, at times pretty difficult. The way he takes all the blankets off himself when he rolls over so that he wakes up cold time and time again, to objecting to wearing a sleeping bag (no idea where that came from?). Not to mention the frustration he seems to feel as he tries to shake his Boots’n’Bar loose, only half-awake in the middle of the night, which can be heart-breaking to witness. These evoke those “just chuck them in the bin moments” (By the way, they also evoke some of the deepest feelings of resilience and perseverance that I have ever experienced).
5. How inflexible I feel about our afternoon/evening routine. I am incredibly grateful to Sydney Children’s Hospital, who offer us the highest standard of treatment. This means pursuing 14-16 hours of wear every 24 hours. However, this also means making a choice every day about what part of Zach’s awake time is going to be booted. To my hubby, this means compromising running around barefoot on the lawn after dinner.
Either the boots go on early so they can come off early (e.g. on by 5pm, off at 7am or ideally 9am), which means I need to be home at a reasonable time in the afternoon so he can wash before his boots go on.
Or, he has the late afternoon and evening boot-free, but wears them late the next day (e.g. on at 7pm, off at 9am or ideally 11am), which can lead to a difficult morning the next day – see number 6!
6. Reduced mobility. There is no denying that we are fortunate with how super-mobile Zach is in his boots. Our hospital even have photos of him jumping while wearing his boots, to show other parents what is possible! But, it’s not a quick trip out with a 3 year old wearing Boots’n’Bar. You either carry him, use a pram (double in our case, with a younger sibling) or walk veeeery slowly. I guess it’s a little like having twins, except one is much too big (& independent) for the carrying stage!
7. Those long, hot days and nights that reach 40 Degrees Celsius + here in Sydney, when all I feel like doing is sleeping naked under a fan, but I have to layer my son’s feet in socks and then tightly fastened boots.
8. Earlier in the journey I found the lingering looks from passer-by’s confronting at times. This was almost entirely dependent on my mind-set in those moments. When Zach was having a tough time, I became very conscious. I remember hurrying through the mall one afternoon, Zach’s shrill, new-born cry reaching people all around me. I was holding him in one hand in an attempt to calm him, and trying to push the pram loaded up with shopping with the other, as “everyone” stared at his boots. Not one of my most composed strolls around the shops.
9. The task of figuring out which “standard” parenting advice needs to be calibrated to suit caring for a new-born wearing cast(s) or Boots’n’Bar. Settling, feeding, clothing, socks and even the practicality of high-chairs need to be considered.
10. When he looks up at me with pleading eyes and says “Boots off please Mama?” and I have to reply with “not yet mate”, or he is throwing a toddler scale tantrum when it is not yet time to take them off. On those days it can be extremely trying to stay firm with our resolve to maintain his hours. The funny thing is, I often feel conflicted about his boots being off. Who knew I would be quietly waiting for the time to get his feet snugly back into those miraculous little boots!
What springs to mind for you as you read this? Are any of your Top 10 Challenges the same as mine?
No matter how different the process can be from one family to the next, I believe we can all support each other. Our end goal is, after all, exactly the same – for our children’s strong, straight, treated feet to be just one chapter in the story of their lives.
Now please – head back to that benefits blog!
Love Lans xo
PS Please remember this blog is our families story, and in no way a prediction of what might be ahead for you if you are beginning this adventure!