Sometimes it’s not all that easy to pretend that everything is ok, and that taking things “One day at a time” is ever as sufficient as parents like us, always care to pretend. Sometimes things are too much. Sometimes the stress isn’t manageable. Sometimes circumstances aren’t anything like how you imagined they’d be. And sometimes you just have to bite your lip, swallow your pride, cross your fingers, and ask for help. So that’s what I’m doing.
For those of you who aren’t familiar with Tristan’s situation; let me fill in some blanks. Our son Tristan was born with Down Syndrome. We weren’t expecting it, it wasn’t foreseen, but, nonetheless that is the least pertinent of our concerns. In-fact, as soon as you get over the initial shock of having a child with a condition that you don’t fully understand; you learn quite quickly that it isn’t that much of a big deal.
But, it is in-fact all of the peripheral issues that cause us the most disfunction and heart-ache. It’s the congenital heart disease, the partial blindness, the life threatening respiratory disease, the open heart surgeries, the constant infections, the low muscle tone, and the constant fighting over entitlements. Its the audiologists, cardiologists and the ophthalmologists. Its the paediatricians, the ENTs, the speech and language therapists, the portage workers, the social workers, the occupational therapists, and the Physiotherapists (There are more, but you get the idea). It’s the emotional obstacle course of not knowing what kind of school to send him to. It’s the fact that it costs £70 merely to afford the kind of babysitter qualified and confident enough to watch him as he sleeps. It’s the constant diagnoses of illnesses that we weren’t even aware of. It’s the feeding tubes, the ventilators, the low immune system, and the sheer volume of time that we spend traversing hospital corridors, and sitting on the worlds most uncomfortable chairs.
But we can’t complain. We are proud to live in a country where this range and quality of care is afforded to our son, at minimal expense. But, saying that we are proud that it exists, isn’t the same as saying that it’s easy. In-fact I take absolutely no pleasure in admitting that the situation has resulted in me being detained under the Mental Health Act (Twice), and I have now had to leave a well established career, in order to assist with Tristan’s care. We aren’t where we expected to be in life, and the trajectory of our immediate prospects will probably remain relatively flat until the worst has past, and we can exchange the numerous semi-permanent burdens, for the less numerous, permanent ones. But until that happens, we are left to recite that tired old cliché “We’re just taking it one day at a time”, over and over, to strangers inquisitive enough to ask how we are coping.
About a year ago, Tristan underwent the most dangerous operation of his entire life. You see, Tristan has a very rare disease called Long Segment Tracheal Stenosis. A life threatening condition that restricts the flow of air, due to a naturally restricted airway. Throughout this very long winded procedure, Dannielle and myself decided to ask for help that we badly needed. I had recently left my job in order to stay by Tristan’s bedside, and we were literally living in the worlds most expensive city, whilst Tristan went through a very extended, and remarkably traumatic recovery (In which we lost him on two separate occasions). We reached out to Facebook friends with a Go Fund Me account that we created as a bit of a punt. But, unsuspected by us, the response was nothing short of incredible. In-fact, within a matter of weeks Tristan had been given over five thousand pounds in donations from all over the world. And for that, we are eternally indebted to everyone that helped us in whatever way that they could. So thank-you.
Fast forward a few months, and we were moved to a home more befitting Tristan’s needs. My goodness, we’ve got giant electrical hospital style beds, elaborate and arguably over-engineered toilets, equally elaborate kitchen chairs, retrofitted safety taps; the entrance is being ramped, and stairs are being barricaded, and we may never be allowed to own rugs (For reasons that are yet to be explained to us). And throughout all of the things that are given to us for Tristan (None of which we ask for by the way), the biggest issue that needs resolving is being flat-out refused: the garden.
Now, I get a little worried writing stuff like this; because I imagine someone on the receiving end reading it and thinking “Good God, you want a lot”. When in fact no, that simply isn’t true. We fight tooth and nail for everything that we have, only to be given a panoply of things that have little practical application. We have a bed that is essentially a cage (That I cannot believe even exists), a toilet that even I am unsure how to use; and it now is being suggested that the stairs leading up to our house have to be painted with bright colours. Which I wouldn’t mind so much if it didn’t mean our house looked like Mr Tumble lived there.
But the garden is something that Tristan would genuinely benefit from. Somewhere where he could be secure and happy, and be able to play, without us constantly having to worry about his well-being. The garden that we have at the moment we are unable to really use in any capacity (Even with supervision), because the nature of Tristan’s vision, muscle tone, and abrupt onset fatigue, simply makes it too dangerous.
To give you some perspective, the garden is basically a rockery, with an old pond that the council have crudely filled with millions of little stones. The ground is predominantly a clay like substance as well; so despite our best efforts to level the ground, it’s like pushing a giant rock up Everest. And even if it was a case of sheer sweat and brute force, we would need to arrange regular childcare, that we simply cannot afford, even if was a case of mere hard work..
I’m not one for asking for help. I’ve left a very successful career in order to help be Tristan’s carer; and that was a choice that was made begrudgingly out of desperation and necessity, over and above any overwhelming lust to sponge off of the state (As some would no doubt be inclined to assume without meeting me).
Tristan doesn’t just need this…we need this. If anyone has ever spent an extended period of time with Tristan, they will know how challenging it can be. He is the most gorgeous, wonderful little boy in the world; but we ARE tired. We are sick to the back teeth of having to fight for everything…and I do mean everything. We don’t actually ask for much; but when we do ask for help, it’s never the kind that we don’t actually need. We aren’t going out and getting on the lash…or supplementing our wardrobes. We aren’t expecting some kind Never-never-land; we just want something functional and Tristan suitable. Somewhere where we can let our son be safe, without locking him in the cage, that I kid you not, we now own.
We love our son, and would never change him. But please know that I take no pride in asking for help because of him. There are elements and realities that are attached to his situation that can force us to occasionally make undignified requests of this nature. So I am open to any and all suggestions, and any help or advise that you may wish to offer me. I want very much to be able to raise funds for this, because I’m afraid it is a problem that I will not be able to solve on my own.
For those who don't know me, let me introduce myself: My name is Tristan Timberlake. And I have Down Syndrome. If you decide to read this until the end, you are about to learn two big things about me. Firstly, that I have been through a hell of a lot for someone so young; and secondly, that I clearly have an above average vocabulary for a toddler. But I’m not one to gloat? I’m just going to tell you a bit about my background, because, firstly, I think people need to understand. But as I’m sure you can appreciate, this is quite a journey; so forgive me if I seem to glaze over things that seem somewhat monumental; as I merely have a lot to get through…and don’t want you to get bored or lose interest by submerging you in the macabre and the morose. So here I go…
When I was born, my mummy and daddy had no idea what the next few years were going to be like.... I have Down Syndrome as I mentioned, and mummy and daddy simply didn't know this until I was born. I became very poorly and was rushed away from my mummy in the dead of night and put into a neonatal unit, where I was cared for by lovely nurses and doctors in colourful tunics. I wasn't allowed to cuddle my mummy, or my daddy, for days. They could only touch me through holes in a little box and smile at me through translucent plate plastic.
This is when they called my mummy and daddy into a room to tell them that I had congenital heart disease, and my little liver wasn’t doing great either. As you can imagine this news was hard for mummy and daddy to take on board. Mummy was crying all the time, and my daddy, who always used to crack jokes when he was nervous…was stunned into an elongated silence that carried on for over two weeks (So it wasn’t all bad news).
The doctor went on to say, that “He won’t need his first surgery until he is 9 months old” and explained it would be done in a children's hospital. Oh, how wrong he was!
When I was finally deemed well enough to leave the hospital after several weeks, I would have nurses come to my new house weekly to take my bloods; but they noticed I stopped gaining weight; so, my mummy had to feed me a special milk every couple of hours. I started to cry a lot, which was unusual to my mummy and daddy, as I never cried. So, my tears, compounded with a constant cough, motivated mummy to take me to the doctors. I think they thought mummy was being over the top; but as she explained, “He never cries” and this is “Very unusual”. So as opposed to disregarding mummy as one of those overemotional mummies; the doctors called it “A viral infection”, and that was that! Which didn't sit right with my mummy at all. So, like a relentless force of nature, she kept taking me back to the hospital over the following weeks and made her case that there was something else at play.
But the doctors just kept on saying that it was an upper airway infection, and that I didn't need any major treatment. Two days later of course, my mummy woke up to me foaming at the mouth, floppy and not “With it”. Terrified that I was about to die (which would have been the case) Mummy and daddy rushed me straight to hospital, only to be told that I was in heart failure! Not only that but I had pneumonia. Pneumonia that was making the whole situation even worse. So, after some badly needed oxygen, and four different kinds of antibiotics, they got me to a stable place, and at 11 weeks old, I was sent to Great Ormond Street, for a very major heart operation.
Luckily my operation went well. I went into theatre and came back out 8 hours later. Only to find my mummy in what can best be described as a” Hot mess”, and my daddies fingernails chewed to nubs. I'm not going to bore you with the in-betweens but we all thought I was on the right road to recovery. But I’m afraid this was just the start.
When sleeping, I would simply stop breathing. I would be up coughing all night but was never able to bring up the mucus that was blocking my airway. I would always get strep-throat A & B and tonsillitis, more-or-less every month. I would have sleep studies done regularly, but nothing major was found; especially nothing so major that it would causing what I was going through?
Then on December 14th, 2015 (Yes, my mummy remembers the date) I began to sound like Darth Vader. I was given antibiotics as usual to help get over it like always; but this time they were not working. Probably because my body was so use to them by now. I simply wasn't getting any better. So, I spent my Christmas and New Year’s Day in hospital.
After a dose of steroids, I was sent home; for no real reason other than that I had started to move around a little more. I was given a complimentary inhaler, that didn’t make the slightest difference whatsoever; but somehow the conclusion was that I was “Getting there”. Over the next six months I was on antibiotics every single day. I would also use my steroid inhaler whenever things got particularly bad; but the truth is, that the serious recession over my heart, and stridor in my neck, just weren’t receding. Not to mention that I still sounded as if the Rebel Alliance was causing me issues. This wasn’t a subtle issue. It was obvious, conspicuous and impossible to ignore.
Doctors kept on referring me between ENT & Respiratory consultants, simply because they had no idea why this was happening? They agreed to take my tonsils out hoping this would improve my breathing. Which was a choice made begrudgingly, because such surgery wasn’t ideal whilst I was still so little. A situation made worse with the fact that I constantly needed to be ferried to the high-dependency unit whenever the worst happened (which always seemed to be the case).
After taking my tonsils out and fitting me with a shiny new set of grommets (As I have a hearing impairment), they discovered my airway, that was, for my age, dangerously restricted (Something that should have been spotted at birth). The doctors simply couldn't get into my airway enough to insert a tube designed for premature babies. So, upon realising this, alarm bells started ringing.
So, they gave me a bronchoscopy, and it was finally suggested that I might have Long-segment-trachea-stenosis, and I was referred straight to Great Ormond street, where they conducted all of the tests that they needed in order to confirm the diagnosis (Which if you’ve not heard of: its a rare life threatening disease unrelated to down syndrome http://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/tracheal-stenosis )
The consultant said to my mummy that “We do not know how Tristan has made it this far?” As you can imagine my mummy and daddy weren’t particularly fond of having another condition to chuck onto my pile; but I guess that’s life? So, they booked my surgery for August 2017, where I went for my Slide-Tracheoplasty (Airway reconstruction). The surgeons said it went “As well as it could have gone”; but in the days that followed, I was cheeky enough to die twice (I know right).
A few days later they tried to take me off the ventilator, and said that “We don’t usually do this, but Tristan is showing good signs of improvement, and you might be able to go home sooner than you think”. But after hearing this I think I managed a day of stability, before going into an utter tailspin. It all changed! I had already been through a lot, but I don't do things in small doses.
I am in intensive care still at this point, so I had a nurse watching me 24 hours a day. I started to break out into perpetual fevers, and nothing was bringing this down. Numerous medications, Ice packs, and so on. I started to go into respiratory distress, and my kidneys were passing too much fluid. They knew I had an infection; but not what kind? it was 5.30am and I started to really decline; and for another short while, they lost me. But the amazing doctors and nurses bought me back which I am ever so thankful for.
It turns out I have Mediastinitis (https://emedicine.medscape.com/article/425308-overview)
So, I was put back on the ventilator to help me breathe, because it was a bit of a rocky road and I was in hospital for quite a while. I had two pneumothoraxes, which wouldn't go away; plus a few other infections on top of that. In-fact I didn’t just have one thing that was trying to kill me…I had lots of things that were all working together. And if that wasn’t enough, I also ended up with a morphine addiction. Yes, a four-year-old with a morphine addiction; crazy right!
After a few more ups-and-downs (And yes, there were more downs than ups) I could go home. But make no mistake about it, my life has never quite been the same. My vocal chords were damaged during the procedure; so, I don’t quite sound the same anymore. But that’s ok I suppose. Because of all the procedures and surgeries, my voice box is also damaged, and swallowing can often present problems. The infections still come and go…and there is little practical change that can be made to my sight or my muscle tone. But, c’est la vie.
Its mad isn't it? I go into hospital for surgery to make me better, but I come out with even more problems than I went in with. But at least I’m alive. I'm not going to bore you with everything else, as, like I said, I would be here forever; and so, would you. My rare disease is not linked to the trisomy 21, but my heart disease, visual and hearing impairment is. Like I said I don't like to do things in small doses, but this is my story so far.
I’ve asked my mummy and daddy to give you regular updates on my life and my progress. Some of the stories will be funny…others sad. But telling you is the best way that my mummy and daddy cope. So, check in from time to time and see how I’m getting on, and take a seat on the scariest roller coaster in town: The Tristan Twister.
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