First steps

Today we got to share watching our baby girl , 16 months old on 23 Feb 2021 take about 6 or 7 unassisted first walking steps today. It was a special moment at home on a Sunday, we’ve all been watching and waiting for. She has been cruising furniture and taking steps between coffee table and the lounge for a few weeks but today she went out on her own and was totally confident.

She took her time and like her crawling, well lack of, she has always scooted on her bottom instead of traditional hands and knees crawling, she did it her way.

We all got to cheer her and she squealed in a high pitch scream when she knew what she’d done and we had been cheering her on, with applause. The best part of was seeing her older brother clap, when we clapped. So here we are mum and dad cheering the steps along and clapping , then big brother looks up and gets excited and claps too. A big brother clap of approval. No words maybe a yell of “yeah” or “hey”!

He doesn’t know the significance but he knows we are excited when she walks. He was nearly 2 or 24 months old when he finally walked. 16 months vs 24.. I can still remember how it felt watching him cruise and struggle to find his feet for those long 8 months.. Wondering why he can hold onto thing and toddle, but refused and physically couldnt do it on his own. He just kind of collapsed at the feet or ankles when he tried. It looked painful and so sad to watch because he wanted to do it and he was trying but his feet were letting him down. This time around, if she hadn’t walked by 17 months, I’d be at the physio ASAP. I wish I hadn’t waited so long with our son to see a new private physiotherapist, we had been seeing the local Hospital therapist and not much had changed to be honest, but you trust them and the process and you have no idea. Its a blindfolded process and I had no idea. Makes me sad now to think how much I trusted that he’d “catch up”.

In February one moth before his 2nd birthday I desperately sought out the best paediatric physiotherapist locally. I begged for an appointment and got a cancellation finally. We started seeing the physiotherapist weekly, she was highly recommended, mainly due to his inability to walk and his low muscle tone generally. I drove him to therapy once or twice a week and paid privately as we had exhausted our private health cover and all the medicate cover also, but we’d do anything for him. We did little exercises at home, we built him balance bikes and bought balance toys. We made him do things which made him upset but we tried to see the light at the end of the tunnel. Hard therapy love and all that.

She commented on how rolled his feet were. How outward turned they were. So she put him in a tiny little pair of orthotics, inside his little adidas sneakers bought especially to fit his special orthotics and it lifted up his fallen arches. It seemed to work?! So we went regularly to see her, we wore the orthotics at home and everywhere we went even though he was still crawling. But we always did what we were told and we persevered and we kept hoping this would be the change he needed. A few weeks later we took a trip to Fiji.

Just the three of us. It had been our first overseas holiday since he was born (nearly 2) as the ENT surgeons at Sydney Childrens Hospital were worried about his airways and proximity to a children’s hospital if we were overseas and he fell ill. Any previous holiday we had stayed close to a location with a major children’s hospital, but this time we decided to trust our instinct and be very safe, take the top top top travel insurance and go somewhere far away, we needed it. After 2 years of hospital stays and surgeries and therapy and challenges, it was what we needed to escape a bit of reality and enjoy each other.

It was the day before we left and my husband remarked how close he was to walking unassisted after 8 months of cruising furniture, he was so close with his little orthotics in.

We flew to Fiji and the bure we stayed in had tiled floors. Cold hard tiled floors. It was only a day into staying there when we saw more attempts to walk instead of crawl on the cold tiles. His coloured stacking cups which we took with us, they were falling over on the tiles with a bang but he didnt like to crawl and retrieve them as it was so hard on those cold air conditioned tiles. He was cruising to them more and more often and less knees.

Plus we took him to a creche and we met Nanny VA for the first time. This was so new to him. The carpeted floor in the creche area with so many kids and no previous access to playgroup or childcare, no exposure to watching other kids toddle…he finally got the balance right and we got the first steps we had prayed for, we had worked so hard for and that we patiently waited for. It was a combination of both and my husband believes the change of scenery which helped him do it. It was the best text message home or “viber” message home to family and friends ever!

That was such a happy time, seeing him take those steps and walk along the paved paths in his little shoes and be supported by the orthotics and finally be balanced enough to walk like all the other little kids, it was so nice. It was so normal. We always had the big toddler who still crawled everywhere and got dirty knees and scratched/wrecked the front of all his shoes from crawling in them. Finally he was up where he needed to be, walking with his arms out, slowly and not steady, but he was walking.

So many children with genetic syndromes or disabilities don’t have the blessing of being able to walk. I appreciate his walking and gross motor skills for what they are, amazing, not perfect but he has ability. I have so many things which I wish he could have, but this one, I appreciate he is so lucky to have found his balance and Im so grateful that phsyio gave us those orthotics. I cant believe it only took a few weeks with them in to help him enough to walk on his own. Kids often don’t walk with Coffin-Siris Syndrome, (CSS) the low muscle tone is a huge part of the life they live. For us it was and still is so connected to his airways and his fine motor skills, his hands still shake just holding a pen or utensil. His lungs and trachea still flatten and have a noise or stridor when he is exercising, concentrating or exerting himself in some way, even sleep. He was blessed to walk. This is a reality we are learning now as we had no idea about the CSS back then.

I am still so fond of the memories of Fiji, it was such a huge turning point for him. Today we got to see it happen so naturally and with such confidence, it makes you happy to see as a parent, but like all the things we experience with our baby girl, it reminds us how hard it has been with our son. How hard things still are to this day.

Even the pieces of soft cheese we tear off and put in his mouth, which is such a huge recent step in his oral aversions and lack of chewing, for him to let us put cheese on his tongue…the size of the safe piece of cheese is now smaller for our son and larger for his baby sister. She is overtaking him in little things, stacking rings, pulling on pants, undressing herself, they are all normal milestones for her, she is amazing but its such a bittersweet celebration at times. I can lie and say it’s all positive and joyful, it is at times, but then it hurts afterwards. It hits you in the heart and your thoughts always turn to your son afterwards. My husband feels the same way, we talk about it, Im not alone. But we try not to focus on it. We try to celebrate the wonderful parts of everyday in anyway we can, but it’s important to acknowledge that with some highs, there are immediate lows.

So many first steps for both of them to come, she will help him and he will be helping her in his own special way. She adores him, after he went to bed tonight, she kisses his photo in a frame, over and over and says the sound of his name. Totally unprovoked, totally innocent and just the pure love she has for him, she wants to be with him every minute of everyday and soon she will be chasing him on her feet. A special day.