On a recent Wednesday night we were having a Boots’n’Bar battle. I know it was a Wednesday, because our hospital hold their clubfoot clinic on Thursday. As I comforted Zach I felt reassured knowing that the following day coincided with his next check-up. He was 22 days off four-years-old, so theoretically 1 year and 22 days from the anticipated end of treatment.

IMG_1299 EditedThat Wednesday night I watched him turn over; again and again, and kick his feet furiously; again and again. The bar holding his two boots firmly in place crashed down onto the side of his bed, causing yet another small chip in the wooden frame. What had begun as frustrated moaning and angry sighs, had now escalated to heart-breaking sobs. A quick glance at the clock showed this had been going on for nearly 2 hours.

We have plenty of techniques we use to support Zach through the tough times, but none of them were having much effect last week. Like many a clubfoot family, we have spent days and nights consoling, encouraging and empathising. In between that we have also spent alot of time admiring Zach’s resilience, his strength and his ability to keep-on-keepin-on.

Without saying a word I reached for the bar and unclicked it from underneath both heels. He immediately rolled onto his side, pulled his ankles together and curled up into a tight little ball. Within seconds his breathing slowed, and five minutes later he was fast asleep.

IMG_2716 editedZach’s feet have responded exceptionally well to the Ponseti method of clubfoot treatment. Check-ups have almost always been a positive experience. Our most recent visit to Sydney Children’s Hospital will probably remain particularly memorable.

“Some of our families are stopping treatment at four instead of five, and Zach’s feet are looking great…” our physio pondered. I had wondered if this would come up, having heard of many families finishing treatment at four recently.

Most babies’ feet typically double in size between birth and 4. Clubfoot is a condition that persistently wants to return. Reducing the likelihood of that happening is usually only achieved by holding the feet in an over-corrected position with Boots’n’Bar or KAFO(s) through the intense early growth years.

With the previous night so fresh in my mind, I felt like I was being offered a get out of jail free card. Could we really be just 22 days away from the end of Zach’s Boots’n’Bar journey?

But I also know that Ponseti International state: discontinuing brace-wear during a child’s fourth year brings with it a 10-15% chance of relapse, while subsequent years after that the risk of relapse is only 6%. The potential to give Zach better odds of avoiding relapse by continuing for an extra year of treatment is a motivating prospect. After all that our family have invested into his treatment, hubby and I knew we couldn’t stop now.

And so with the backing of Zach’s team, his clubfoot treatment journey will continue for another year and 15 days. These are our reasons and inspiration to aim for five years of treatment:

1. Despite being geographically distanced from both of our families and many of our friends, we have an almighty band of cheerleaders. Sharing the tears as well as the triumphs of Zach’s clubfoot journey has allowed our supporters to know when we need encouragement. I often re-read loving messages we have previously recieved on the tough nights, and it truly gives me a boost to persevere ~ Thank you xo

2. Zach has his own cheerleaders. What a gift they give each other! Zach shows his friends that we are not all the same, while his friends demonstrate that they are his buddies, egging him on, with or without his boots.

3. Despite Zach’s incredible mobility resulting in many broken pairs of boots, our treating team are willing to provide him with the equipment he needs until he is five years old. We know this is not something to be taken for granted.

WCFD-mosaic4. The fear that our child would be disadvantaged has never eventuated. In fact, the polar opposite is far more correct. The community around us have embraced Zach’s once-curly feet and his magic Boots’n’Bar. His preschool have demonstrated inclusion to a heart-warming level. This is Zach celebrating ‘World Clubfoot Day’ with his pre-school buddies. Those around us have shown that it is not only OK to be different, but interesting and exciting and so very worth celebrating.

20150724_115432 Edited5. I came across kiwi couple Sam and Rachel Callender last year, and have been following their story. Reading the Super Power Baby Project reminds me that we are only on the cusp of having an extra challenge. More importantly, it inspires me to see beyond medical jargon and equipment right to the heart of the matter. Zach is a strong, determined little man. He encourages people to persevere and draws out compassion.

6. Seeing the pride on Zach’s face as he shows off how high he can jump, how skilfully he can manoeuvre and how fast he can move with his boots on is incredible. Not to mention the absolute joy I feel meeting families who are new to clubfoot, and being able to share with them that is is possible for their little one to be mobile in boots.

7. Remembering how fortunate we are to be in a position to be making this choice. Talk about first world problems! Sadly, in other countries children go without treatment, and as a consequence of being born with clubfoot are sometimes even outcast in their own community. I feel a deep gratitude for having the privilege to choose.

Lana Mayes - Book launch 068Sometimes in life what appears to be the less attractive path is the one that can potentially lead to the greatest reward. At the end of the day I want to know that we have given this treatment the best shot we can. My goal is to balance demanding more of myself (and essentially more of Zach) for something I feel is worth fighting for, while embracing a more gentle and forgiving approach on the tougher nights. I am petrified that by giving Zach an inch of boot freedom, he will want to take a clubfoot mile…but it is time to allow flexibility.

How encouraging to know that whatever unfolds in the year ahead, the future is looking bright… and full of straight footprints!

Regardless of our decision, families all around the world are making decisions that best serve their circumstance. I believe it is important to celebrate the choices we all make every day as parents, to best serve our children.

So, with the end in mind…cheers to having a choice!

Love Lans xo

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