Taking each day as it comes, one step at a time, has and always will be our philosophy. No-one knows exactly what the future holds, but they have some vague idea. We on the other hand really don’t know; we don’t know if Isabella will ever walk or if she will ever talk. So we take each day at a time and we let Isabella lead the way. We have mountains of hope for Isabella and support her in every way we possibly can.
About 18 months ago Isabella’s Physio gave us a Standing Frame and like Ronseal it does exactly what it says on the tin. It is a frame that Isabella is strapped into and it forces her legs to maintain a standing position. I use the word ‘forces’, as Isabella doesn’t naturally bear weight on her legs. Thinking back to that day it was a very surreal moment, as I had never seen Isabella stand before. She looked so tall, it was amazing. Sadly not only did she look tall, she looked terrified and she looked like she was in pain. In the split second she was standing tall and I was standing proud, she lost it. Her face screamed out to me, ‘let me out Mummy it hurts!’ Her face immediately became red with tears and in an instant she became inconsolable. I tried singing her favourite songs and I put on her favourite music. Nothing worked. She screamed louder. It felt like my heart was being ripped out of my chest. My eyes filling with tears and swallowing hard, I looked at the Physio. She looked at her watch and said, ‘Okay we can take her out now, we don’t want her to hate it’. Isabella had managed 2 minutes. As a Mummy it felt much longer and I am sure Isabella thought so too.
I took her out and the minute she was in my arms, the screams turned into a silent sob and she tried to regain her breath. With her snotty nose and wet face pressed against me, I gave her the biggest squeeze and told her she was such a clever girl. I didn’t feel like a clever Mummy. I felt awful. I knew that the standing frame would do her good, by building and strengthening her muscles in her legs, but seeing her get into that state by something I had done was not a nice feeling.
After a while she calmed down and all was fine again. The physio assured me it was natural and it would understandably take some getting used to. She advised that we did it gradually and slowly built up the time that she was in there. I remember her saying, ‘Before you know it she will be in there for an hour watching the TV!’ I remember thinking, ‘An hour!!’ and my face must have been as easy to read, as she reassured me it would be fine and we would get there.
So following her advice a few days later Paul and I together decided to put Isabella in the standing frame. We had been playing nicely together all three of us and Isabella was all smiley and giggly. Although we were both anxious about putting her in we didn’t let it show. Going in the standing frame was going to be fun. So we reached for the shoes and started singing, ‘We’re putting on your shoes, we’re putting on your shoes ee ai adio, we’re putting on your shoes!’ No sooner had Isabella clocked the shoes, that smile had turned into a frown. Now Isabella as well as not being able to bear weight on feet, also curls her toes up very tightly and her feet are not flat, they tilt to the side. For this reason we had never put shoes on her previously, as for one we were worried about causing her pain and secondly because of her toe curling we could never get the shoes on.
So here we both were trying to put leather specialist boots on her called Piedros. Now it had been a struggle for the Physio to put them on but Isabella had remained calm, as that time she didn’t know what was to follow. This time she knew and very soon the frown began to tremble and her eyes began to fill up. Her toes seemed tighter than ever and she was wriggling furiously. After what seeemed an eternity the shoes were on, but Isabella was in a state. Now it was the job of two novices to try and stand this wriggly worm in the standing frame. It was a huge effort. Paul and I were hot and flustered and Isabella was screaming louder than ever. We managed two minutes, the screams were much louder than the first time.
We tried to take her out quickly, but even that proved difficult. She was finally out and only wanted Mummy to calm her down. Paul and I looked at each other. We didn’t have to say anything. We both knew that had been torture on all three of us and we were both not looking forward to repeating it. We hoped that the next time would be better.
The next time although we were both more anxious than the previous time, we once again didn’t let it show. We were jumping around acting all jolly making Isabella laugh, but again she was no fool the minute she clapped eyes on the shoes the tears started. It felt like Groundhog Day. It was no easier on any of us. But we managed the two minutes. I say we, Paul had to leave the room.
It became no easier, if anything it became harder. There were times she had gotten herself so worked out she didn’t make it into the standing frame and other times she (we) couldn’t even manage the two minutes. With the constant battle and dread of the standing frame I was still thinking to myself how was she ever going to do an hour. I spoke at length about it with her physio. I asked her if we were hurting her and she said Isabella may find it uncomfortable. Her face and screams read more than uncomfortable to me. She said that she would get her some gaitors, which are velcro pads with metal strips in, which straighten the calfs below the knee. The gaitors arrived and we tried them. This made the job even more tricky as she would wriggle even more and when they were finally on it was even harder to get her into the standing frame.
So even with the gaitors the task of the putting Isabella in the standing frame was huge. The physio suggested that may be we try a different type of standing frame. So it was wheeled away and for a while we breathed a sigh of relief, the contraption that was causing us all pain was gone, even if it was for a short time.
In the mean time we tried standing her in front of the sofa. We still had the same battle with the shoes and gaitors and the two of us acting as a standing frame was also quite a mean feat. Soon the new standing frame arrived. This looked like even more of a contraption and there was even MORE velcro. Great I thought more places to have to strap her into and restrain her whilst she is doing her best to wiggle out of it. This standing frame had a table. The Physio hoped that having toys to play with would distract Isabella.
Like the first standing frame, this was just as unpopular with Isabella, even though it has a flashy table on it. We couldn’t get past the 2 minute mark and due to the vast amounts of velcro it was even harder to get her in. I spoke to the physio again and asked her if this was normal. In her time she had seen lots of children with varying physical disabilities, but she finally agreed that Isabella was an exception. She admitted that she hadn’t seen children get as worked up as Isabella. She ordered Isabella some sandals, as she thought this would make the job of putting her shoes on easier. It did as we could flatten her feet and stop her toes form curling whilst we put on the sandals. Sadly the tears still flowed and the battle was just as huge. We still just couldn’t get past that two minute mark.
I did some research on the internet and saw that there were frames that were tilted rather than being straight up. I told Isabella’s physio and she said she knew they did them for adults but not for children! I told her I had seen them on the internet. She said she would see what could she do. In the meantime however she finally agreed that she should take this standing frame away. This made us all very happy (and gave us more room in the Play room!)
Months passed and no mention of the new frame. I asked her how she was getting on with locating a new standing frame. Her face looked shocked and it told me that she had forgotten. She admitted she had and said she would get on to it! This only further confirmed my doubts and concerns with the professionals and the so-called system.
Finally after a huge wait we got the new standing frame. First point noted was LESS velcro and it had wheels, it was already doing better than its predecessors. There were still the tears and the fight to get in, but once in Isabella wasn’t as bad, there was an improvement, albeit small. This filled me with hope. Daddy was away so Isabella couldn’t go in as often as it was a two-man job, but I still persevered with the sandals and trying to stand against the sofa on the days when no one was around.It was a little better but it was still struggle.
The months passed, Daddy was finally home and we had new sandals as Isabella’s titchy feet had grown. The first time she tried them, there was NO tears, not a murmur. I was shocked and sadly Daddy wasn’t around to see. I was so pleased. Not wanting to jinx it, rather than stand her up, I put her in her chair, she was as happy as Larry, I was over the moon.
So the next day with Daddy’s help we tried the standing frame. Once again the shoes went on smoothly and the transistion into the frame was just as smooth. Isabella was actually smiling. We couldn’t believe it. I was gobsmacked. We were gobsmacked. Isabella was STILL smiling. Not wanting to lose momentum we showed Isabella how excited we were and danced around with her and played with her and before we knew it 15 minutes had passed. A whole quarter of an hour – UNBELIEVABLE! Pleased as punch we took her out and praised her enormously. That was on the 19th August and since that time she has been in there 11 times for 15 mins each time. She is happy and so are we. We are immensely proud and I have now taken to singing Elton John’s – ‘I’m Still Standing’ to her!
Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time…