Tag Archives: prematurity

Small Steps Amazing Achievements

I have longed for the day that I could link a post to one of my favourite linkys with this title. Small Steps Amazing Achievements, is run by the lovely Jane over at Ethans Escapades. It isn’t exclusively a special needs linky, but many of us who post over their are, like Jane, parents with children who have additional needs and for whom the little things are huge.

But this week, Small Steps Amazing Achievements takes on a new meaning for me. And here’s why.

A few weeks ago we have an appointment with a rep from Rifton. As Boo has been showing lots of interest in stepping since having his Lycra suit with us supporting under his arms, his physio wanted us to look at walking frames. Boo needs one with various bits of support, especially round his trunk, and the Rifton Pacer seemed like our best bet. So we tried one out.

I was nervously excited about the appointment days before it took place. I want independent movement for Boo so much. I want him to have the chance to walk with an aid if he can. If the appointment went well, his physio would put in a justification to the panel to see if the PCT might fund the purchase of one for him. It was almost too much to hope for.

The day of the appointment was a bit of an anti-climax, though. The rep was lovely, and my heart did skip a few beats in joy when it turned out that Boo didn’t need all the supportive kit the Pacer can provide. (We were taking bits off a piece of equipment, folks, rather than adding it on!) But the much-needed thoracic support on the Pacer which was keeping Boo upright was also clearly going to cause him problems.

You see when Boo steps with us, he initiates the first movement by using his high tone by going into extension (so stretching himself up and back) which gives him the rotation he needs to get going. Obviously he shouldn’t walk like this, but as his physio says, ‘if you’ve got it, flaunt it’, even if what you have is high tone. The thoracic support prevented Boo from doing just that.

He stood up quite happily in the Pacer. In fact he really seemed to like it. I think he thought it was a standing frame, but then looked concerned when it started to wobble if he pushed on the hand grips. But the brakes on Mum, his perplexed expression said.

We did get him to step, but only by initiating every single leg movement manually from behind him. We tried all manner of bribery and corruption but nothing persuaded him or enabled him to get his legs moving on his own. The minute we got him out of the walker he wanted to step. But not in it.

My heart sank. I worried they wouldn’t put a justification to panel. I worried this would go to the bottom of the list. But his physio and the rep were lovely. They said Boo would get the hang of this eventually. He would have to learn new ways of doing things, but he’d done that before and he and I were pretty determined people so they would work on the quote and justification.

Two weeks later we went for Boo’s next physio appointment where we learned that the justification was drafted and ready for panel (whenever they next convene) but in the meantime, since these things take ages and outcomes are always uncertain, an old Pacer had been found in stock for us to borrow. We tried again to get some stepping going, but nothing doing.

We took the Pacer home, but during half term we ended up travelling a fair bit and couldn’t fit it in the boot with all our other kit. Heck once Boo’s buggy is in the car, never mind the rest of his essential kit, we can barely take clothes with us.

When we got back I decided we would have a concerted go at getting Boo to get what the walker was all about. Instead, my poor old back just suffered dreadfully as I manually moved each one of Boo’s legs with one hand while holding the frame with the other and wearing holes into the knees of my already falling apart jeans. I had a terrible back pain flare-up and developed hideous pins and needles down one leg. My physio – yes, I have one too, now – was not impressed with me.

I got lots of helpful advice on Twitter about incentives to get Boo moving. I tried crinkly surfaces, a ball to kick and a mirror to walk to (which is a good trick for most other physio exercises we do). No luck. Boo just kept giving me the cute ‘Why is my standing frame moving, Mummy, and why don’t we watch In the Night Garden instead?’ look.

I decided to give it a break. I had to give my back a break. And then a couple of days later I was doing the vacuuming and listening to the apoplectic squeals of delight Boo makes when I turned it on, which quickly turned to shouts of ‘more’ when I turned it off. (Sissyboo used to like hoovers, too. They do not get this love of vacuums from me!)

It gave me an idea. I asked Boo if he wanted to do some steps to the vacuum and then we could turn it on again and play. He said ‘yeah’. So I strapped him in and told him what we were going to do. I knew the first step wouldn’t come naturally, so I made it for him and then asked him to step fully expecting him not to be able to. As I reached down with my hand to make the next move, he bent his leg and brought it forward.

I pushed the frame and said step. The other leg bent, rose and landed. He was stepping. He was only bloody stepping.

I tried not to let him hear I was crying in case he thought I was sad. I was anything but sad. I was bursting with happiness. Ten paces later we were at the vacuum and I turned it on and pretended to hoover him up. He brought his knees up to his chest in delight (don’t tell his physio that, OK). And we did it once more.

20 steps in total. In a frame. With assistance. Small steps, definitely.

But honestly, I can think of few more amazing achievements for Boo. I don’t know what this means long term. I don’t know if some steps will turn into lots of steps. If one day he might walk about school in a walker. For now, that doesn’t matter. What he has done is what matters, not what he might or might not. Because these small steps forward couldn’t be a bigger indication of his capacity to try and surprise us all. I am so proud of you, Boo. So very, very proud.

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Accepting that Others Don’t

The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)

When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.

There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties  would look or feel like.

I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.

I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.

But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.

This is the sort of thing I mean.

Scene 1

Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to takeBingo!] He was given a walker to try out by his physio last week.

Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.

Scene 2

Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.

J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.

These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.

I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.

And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.

Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.

I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.

So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.

Good News Friday #54-57

I’ve been neglecting Good News Friday for a few weeks. It’s not because we haven’t had any. Far from it. It’s just that some of it – Boo learning to sit for longer and longer each week and the final emergence of that gorgeous word ‘Mum’ – have been so awesome that frankly I have had to write them up into whole posts, and I have run out of time for GNF.

So by way of a catch-up, and from somewhere inside the cyclone of our lives, here are some of the highlights of the past few weeks:

1) Sissyboo: What an awesome monkey she is turning out to be in a I’m-fabulous-but-I-am-also-six-and-therefore-maddening-and-know-everything kind of way. Her year 1 teacher left at Easter, which made Sissyboo, who is forced to deal with lots of change in her life on a regular basis,quite sad.

But in typical Sissyboo style, after bursting into tears in assembly when the announcement was made, and then spending the evening writing up an illustrated petition from all of her classmates to persuade her teacher to stay (which made her cry) she has taken everything in her stride. Her new teacher is now the best teacher in the world and Sissyboo continues to be very happy at school.

She has also managed to completely amaze me in the last few weeks and has reduced me to tears several times. Most spectacularly, this shy little girl (under whose modest exterior a secret exhibitionist lies) took part in a dance show, doing three different routines, in three dance styles in three constumes on a proper stage earlier in the month. OK, she didn’t remember every move. But the joy in her face was absolutely infectious and the confidence she displayed is something I couldn’t have mustered at her age and that I think any of her nursery teachers would struggle to believe she could ever have gained. Like her brother, she likes to surprise people.

And she has surprised me regularly over the past few weeks. I’ve made no secret on the blog that this anniversary season (from Boo’s birthday until the date 11 weeks later when he was supposed to be born) is hard on me. I am also a bit overwhelmed at the moment by a ridiculous workload and Boo battles on every front, it seems. I am exhausted and it shows, even though I try not to let it. Sissyboo doesn’t make a fuss about it or embarrass me by showing me she knows, but every week since Boo’s birthday in early April, she has left me odd little home-made badges with little messages on, or pictures telling me what an amazing mummy I am.

Yesterday, she drew a picture of her and me in a space rocket. It was accompanied by these words: ‘Mummy, you are amazing and my hero. I love you so much it wood take us up to spase’. Spelling isn’t her strong point. Compassion and empathy most certainly are. This is one amazingly lucky Mummy.

2. Nursery has successfully transitioned into nursery room. This means that for the first time since he started at nursery, he is with kids his own age and some nearly 12 months older. Of course, he can’t access activities without support or run around with his new friends. But he can hold his own and is happy. The kids look after him, bringing him toys and books while he is in his chair or playing games with him on his standing frame. It is amazing to watch. His former keyworker in his previous room is a big loss for Boo and us, but luckily she is staying on as Boo’s SENCO and is being very hands on, which is lovely. She said to me the other day that Boo’s absence from his old room has left a crater and the kids were really sad for the first two days and kept calling for Boo! Apparently they had to take some of them down to the garden to see him as they were worried he had disappeared…

3. Kit I finally have some cutlery (after finally getting some advice in an ‘urgent’ appointment with the OT about various things that was 3 months overdue) that I think might take the fight out of mealtimes. Boo can’t feed himself without hand over hand or elbow support as his arms won’t reliably raise to his mouth and even if they do he can’t twist his wrist to get the food off. His solution is to take his head to the spoon, fork, or plate. He’s not that bothered how he gets his food as long as he gets it. He is determined to feed himself and has started to refuse food at home and nursery if we feed him. Anyway, so now we have some lovely plastic curved cutlery and some great scooping/high sided plates which I think might be just the thing. I’ll let you know.

4. Running I am in training for a half marathon in September to raise money for an organisation that has helped us a lot since Boo’s birth. I am very time poor, unfit and my back is not in a good state. But this week, so far, I have somehow managed two 5 mile runs. I can’t say they were easy or even felt that good, but it was terrific to clear that hurdle and I am determined to do this. I have also raised several hunderd pounds already in just a few days!

And finally in good news:

5. Boo just keeps going from strength to strength. Yesterday in Portage he tried, unprompted, to say ‘tiger’ and said ‘bear’, ‘up’, ‘o’ for ‘go’ and the pet name the kids give to my Dad. If he says it to my Dad this weekend I predict gallons of tears. Oh and very excitingly, we have a walker on loan to try. It’s very early days, but expect a post on that soon…

So over to you. I hope you have lots of good news in your life and would love to hear it in the comments below.

Love

Mrboosmum

2 Years Ago

 

Two years ago, I woke up with the by now all too familiar feeling of excitement mixed with dread. I felt queasy.

Two years ago we got ready to go to the hospital. Again.

Two years ago I longed for the days I wouldn’t have to hit a buzzer to be permitted through a door to see my little boy.

Two years ago I walked the usual walk from the car park to the hospital entrance.

Two years ago I looked up from the ground floor to the first and gazed at the window where the blue lights were on.

I hoped you were OK. I hoped nothing unexpected had happened overnight.

Two years ago Sissyboo held my hand just a little bit tighter.

My other hand was weighed down with things I hadn’t had to carry for a long time: a change bag and a car seat.

Two years ago we hit that bloody buzzer again. For the last time.

Two years ago you looked so big, though still so small.

Two years ago I crossed my fingers for the three hours it took for us to get the word.

That felt like ages, but we had waited so long already. Six whole weeks that felt like six long years. Because two years ago we learned that time can slow down to the point you feel it will never get moving again.

And then, two years ago and three hours later we finally got the nod.

As we walked to the door I kept waiting for someone to tell us it was a mistake. That they had changed their mind.

But they didn’t.

Two years ago you weighed the magic five pounds and had reached the equally magic 35 weeks gestation.

So two years ago our life was rebooted.

Two years ago we became the family of four we had longed to be.

Two years ago, Boo, you came home. Happy homecoming, gorgeous boy. We are so pleased you made it back to us. We will never be separated again.

 

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Running for Self Care

Anyone who reads this blog regularly will have gathered that I live my life by lists. I organise my life around lists. And I tyrannise myself with lists. Lately, the pressures of looking after the kids (6-year-old whirling dervish, Sissyboo, and 2-year-old, Boo, my little bundle of amazingness who just happens to have cerebral palsy), holding down my job, managing Boo’s gazillion appointments (3-5 a week), daily therapies, keep on top of house stuff, well … I can’t finish the sentence because I’m too tired to think about it. Let’s just say, it’s a struggle.

And now, I find I can’t remember the simplest things. Everything has to be written down or it doesn’t happen. Everyday the lists get longer (despite me ticking off things) and I go to bed each night thinking of everything left to do. I even made a list in a dream the other night. I am not kidding.

The one thing that is never on the list is me. My list is organised in categories: Boo (he has separate lists for equipment, therapy and a new one for schooling – get the feeling I’m a bit anal?); Sissyboo, House, Work and Miscellaneous. I don’t even give myself space in the miscellaneous list.

I don’t have the time to think about me. Which is why my eyes haven’t been tested for 3 years, and I am long overdue a couple of routine medical things at the GPs.

But I also can’t ignore me either because I am not just a parent, I am a carer. If I break, other things won’t work so well either. I’m not indispensable (who is?) but not looking after myself will make the Boos’ lives a lot harder, as my recent back problems (the consequence of lifting an immobile and lengthy toddler-who-can’t-toddle) have painfully brought home.

I have to look after myself. I just have to. If I can’t do it for me, I have to for the Boos. And so I will.

And I am.

This week, and now that I have a lovely physio helping me to manage my back pain, I have started back in earnest doing something I never thought I would ever do before having Boo: running.

My running journey started just weeks after he got out of a 6-week NICU stay. I wanted to set myself a challenge. To do something tough to thank those who had helped Boo battle prematurity and meningitis. I wanted to help other families going through similar things, too. I wanted to raise money. So I rashly decided to run a half marathon. With no running history. With no fitness. With depression. With a newborn. While breastfeeding. I’ve told that story on the blog before, so I won’t tell it again. All you need to know is I did it. I ran a half marathon in 2 hours 11 minutes and raised £1500 for Bliss.

And then I got injured. And depression hit harder. And I returned to work. And… I stopped. But I knew I would start again. I knew I had to. And now I am training for a hilly (gulp!) half marathon in September to raise money for a charity that has done lots to help Boo and us in the past nine months.

Three years ago, running wouldn’t have sounded much like self care to me. You run, you get blisters. Your muscles ache. You get rained and sleeted on. If you have to run late at night (as I often do) you tread in dog crap and don’t realise until you find you can’t run away from the smell. It hurts for crying out loud. But for me, it is healing.

I’ve been trying to work out why.

It’s partly because it doesn’t feel selfish. I know rationally that doing something for me is for the kids, too, but can’t always persuade my heart to feel that way. Running is different. I run not to go faster or further but to fundraise. That gives me drive. And it helps get me fitter and boy, I need to be. Boo is getting bigger and bigger. My back has been in a terrible state and it just can’t be. You see despite all the gadgets and gizmos Boo is slowly getting through physio and OT, we as his parents, are the most essential pieces of equipment he has. Just as I clean and maintain his standing frame, chair and adapted buggy, I have to maintain me, too. Running helps me do that. It helps me work better for him. Knowing that means dashing out for a 30 minute jog feels much less selfish than it probably is.

I also run because it gives me head space. The only time my head is ever fully clear and free is when I run. Often I think a lot about Boo when I run. And I use Boo to keep me going when it’s tough. When my legs burn and my lungs feel overused, I think about every day he spent in the NICU, very time I’ve asked Boo to roll over again, or go from sitting to standing in physio when he hasn’t wanted to. I think about every negative pronouncement from medical professionals and how he has proved them wrong. He has never ever given up. Why should I?

But I also spend a lot of time running not thinking about Boo. On short runs (3 milers) I have taken to running in the graveyard near my house. OK, I know that sounds odd. Let me explain. I started doing it for practical reasons. The graveyard is large and I can run laps in it. But, I can also be home in 3 minutes, if I’m needed. When I was breastfeeding and when Boo was having seizures this felt important. Now I run there because I find peace in this place. Because it’s beautiful. And quiet. Because there are bluebells  and buttercups there now and the odd, confused bumble bee. Because there will be butterflies soon. Because I feel part of something bigger, a world beyond the claustrophobic one contained in our four walls. I need that. I need a little piece of a different life, if only for brief 30 minute intervals three times a week.

Running is respite. And respite is vital. If I didn’t run away sometimes, I worry I wouldn’t know just how much I want to come back.

 

 

Sitting Pretty

OK, so this post came with a teaser trailer. OK. A teaser spoiler. You see, I couldn’t sit on the news. I couldn’t help but tweet my joy and relief at the weekend. Like always I did it with a sense of nervousness.

Whenever Boo does something to suggest a milestone will be met or has been met, I worry that telling people will jinx it. It’s not that I’m a superstitious person. I’m not at all. It’s not that I’m a pessimist. I’m not. It’s just when you’ve played the two steps forward, one step back game for long enough you become a pragmatist. Too many things come and go with a growth spurt, or onset of illness, or the turning of calendar pages. But I think this one is sticking. And I am so, so happy.

So, here it is:

Boo sat for 5 minutes. Unaided. 5 minutes. 300 seconds. It felt like hours in my mind.

And it was the reflection of not just hours, but days, weeks, months and now years of hard work and grinning through tears of frustration. Hours of physio at home and nursery every day. Sitting him between by crossed legs, sitting him on my legs. Sitting him straddled on a physio roll and on a box. Sitting him on a Swiss ball and, when that burst, his sister’s space hopper. It’s the result of hours and hours of conductive education and the love and support of his teachers, who don’t see limits in our children, just potential. It’s also, undoubtedly the work of the Lycra suit he now has, which gives his brain enough sensory feedback to make his floppy trunk muscles realise that have a job to do and iron out the c-shape in his spine.

As I sat playing with Boo last Sunday he was on his lime green yoga mat (non-slippy and cushioning for bumps) as usual, I had an array of toys in front and to the side of him to choose to play with: his drums, his bubblegum machine, his V-tech bus. I was actually focused on his SALT therapy at the time. (Yeah, cerebral palsy has robbed me of the opportunity just to play with my son. There’s always an end in view.) So I was getting him to choose toys by eye-pointing and grabbing and making a ‘yeah’ or a ‘no’ (which he can’t yet say but is trying to). I was talking about colours and seeing if he recognised them.

I looked at my watch, to see how much time we had before his sister came back from her swimming lesson and when to put the jacket potatoes in the oven for their tea. 15:05. OK, plenty of time.

Bubble gumballs cascaded down the machine and I tipped it up so Boo could try (it’s very hard for him, but he is just about doing it now) to lift the balls up and put them back in. He was doing so well with this, we kept going. Then he wanted to play with the bus and I made him choose letters (from the ones he can say: ‘m’, ‘a’, ‘d’) and played the songs. I sang them and he joined in with odd sounds. It was fun. And then I got out the drum and realised one of the instruments off its side had fallen off. It was near me, but I had to move about half a metre away from Boo to get it. Without thinking, I did it.

He was still sitting. Diamond legged (to eliminate his hamstring tone), propping with one arm. Then he swapped to prop with the other. He was still sitting. I looked at my watch 3:10. I shrieked. He wobbled. I caught him.

He had been sitting for 5 minutes. Tears welled up. If it hadn’t taken me so much by surprise, if I wasn’t so nervous about not being near him to catch him when he falls, I’d have a picture to show you. Maybe soon.

There have been days (many days) where I worried this day would never come. People had told me not to expect that Boo would ever be able to sit independently. And no one can predict what this means in the long term.

But we’ll take this and shout out loudly and proudly about how well Boo’s done.

No limits, Boo. Sometimes, I think there is nothing you aren’t capable of.

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