Special Needs Spotlight

This Little Miggy Stayed Home is a fantastic blog from a fantastic lady. Each Friday, she spotlights a child with special needs and (you can probably guess where I am headed here), last week it focused on Albie.

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The questions Miggy asked got to the core of me and really made me reflect on being a ‘special needs parent’, which, despite being accurate, isn’t a label I really pin myself with. Its a buzz to see our story in such a forum, to raise awareness of CHD in some small way  by sharing our story with others.

And an even bigger buzz to receive in my inbox, just a few days afterwards, a message from a Mum in Brooklyn, New York. She wrote to say hi, simply to connect – for they are parents to an equally gorgeous boy with a similarly interesting heart. And its these sorts of connections that really fire me up about blogging, in all the best ways. I just love how the internet makes it so easy to draw lines between us all.

Click here to read the full spotlight and the comments on the site.

Thanks Miggy for providing the opportunity. It was like, totally, cool.

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Hi there my name is Sarah and I am wife to an amazing Marcus and mother to an amazing Albie. He was born with a combination of four undiagnosed heart conditions – Transposition of the Great Arteries, Pulmonary Stenosis, Sub-Pulmonary Stenosis and a doubly-committed Ventricular Septal Defect. It’s a trick to really get your head around what that means but I’ll try my best. So put simply,  Albie’s heart had two parallel and separate circuits of blood going through it. Red, oxygenated blood going around and around his lungs and blue, de-oxygenated blood going around and around his body. His pulmonary valve was really tiny and the pulmonary artery was too. He also had two holes in his heart.  Some of the plumbing issues have been resolved, and others never will be. 

We all live together in Wellington, New Zealand in a wooden house on a hill by the sea. I love music, fair trade coffee, social justice, books, large hounds, travelling places, camping, history, dress-ups, ethically made things, wine, hanging socks out in pairs, cooking, sustainable fashion, tidy sheds and dancing about being a goon. 

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Miggy:  Can you take me back to the day your son Ablie was diagnosed with his various heart defects?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Sarah:  I found out Albie had special needs about five hours after his emergency birth in Wellington. I remember the doctor’s face coming into the recovery room. It was furrowed and committed – I knew it did not bring good news. And I remember the broad brush phrases that came out of her mouth – “oxygen levels were very low”, “his heart is not compatible with life”, “emergency surgery is needed”, “ he will be flown to Starship Hospital in Auckland”. But to be honest, that’s all I have from that day. The extent of his heart condition swam in one ear and straight out the other. All I knew at that time, is that I had given birth to a boy that I had not held – a boy who was about to be sent 600 miles from me. And those are the feelings that I go back to when I think of that moment. Grief, great lashings of grief, not because his heart was shonky, but because I was not beside him as I desperately wanted to be.

In the days and nights after Albie’s birth, as I learnt about pulmonary valves and arteries and how gosh-darn-important they actually are, I cried. And cried. And cried.  And I can tell you unashamedly now, because we are so far from there, that most of those tears at that time were rather selfishly for me. I felt like I hadn’t signed up to this. I felt trapped. That if I had known I was going to have a kid with a heart defect than I would rather not have had one. I remember thinking that  – and I write it now very easily for you all here to read because it is so very, very, very daft.

These days, I know that we are stupidly lucky. We’ve come so very close to losing Albie on more than one occasion (Dear Albie will tell you the full story if you are interested). And yet today, we are here in this space, with enough emotional room in me to sit and tell you all of this. These days, my tears are of gratitude rather than sadness. I’ve come the longest way.

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Miggy:  I have come to learn how broad the term “special needs” really is.  For some people this affects their physical body, for others it affects their mind and for some people it’s more about medical issues and their overall health is a lot more fragile… and for others still it’s any combination of the above!  Talk to us a little about the difficulties that come specifically from having a child with medical issues.  What are some of the challenges specific to this type of need? 

Sarah:  Congenital heart defects really vary in their severity.  Some defects have quite a minimal impact on life – many people know of someone with a hole in the heart, for example, and so might think that  heart conditions aren’t such a big deal. But other defects are somewhat more serious.

As with many kids with complicated hearts, the doctors couldn’t repair his heart fully when he was born as he was far too small for what they needed to do. They did some interim surgeries to help some oxygenated blood get around his body and we went home. The wait for his full heart repair was really difficult as Albie had low oxygen levels, was tired and weak. This affected his weight and growth (he was always in the 0.4th percentile) and caused significant development delay.

He got a re-plumb of his heart in August last year, and since that recovery, life is a veritable breeze. He will outgrow the pig valve and artery that they used in the repair. And so it is inevitable that he’ll deteriorate again and it’ll be open heart surgery time again. The current thinking is that the current valve and artery will last him two more years. I’m gunning for four years…..we’ll have to wait and see….

Miggy:Explain how Albie’s specific special needs affects your day-to-day life? 

Sarah:  For his first 18 months, Albie’s overall health was totally compromised by the dysfunction in his heart. We’ve had emergency chopper rides, spent a great stack of time in hospital, had four intensive care admissions. He had a permanent nasal-gastric tube as his body required a great deal more calories than were possible to eat, several daily medications, he was blue from low oxygen levels and he would tire and sweat easily.  As his body was working so hard, we had isolation precautions so that he didn’t catch any extra viruses or colds and blow out completely. This meant no libraries, no childcare,  no supermarkets  – that sort of thing.  I obviously couldn’t work.

Since his first full repair, life is much more stable. And I wonder whether we qualify as a special needs family at all at the moment. It’s the strangest thing to have such a calm after such a storm, and to know too that inevitably the storm will come again.

Miggy:  What are the biggest worries you face for Albie?   

Sarah:  After Albie’s last heart repair, the very next day, he had a cardiac arrest. He was without oxygen for 35 minutes. And for the four days afterwards as we waited for him to return to us, we stared death or severe brain damage right in the face.  I worry that this might happen again next time.
Children with Albie’s sort of heart condition have only been surviving since the 1970’s, so it’s also unknown how long his life expectancy might be.  I found one piece of research from 2001 that said 50% of kids like Albie get over 20 years old. I’ve been trying since to find something more recent and more optimistic. So my biggest worries are really heavy and really dark. So to be honest I try to banish them. Because in the end, worry won’t change what will happen. We are having good times at the moment and being really present in those, and being thankful for them, is what I focus my thoughts on.

Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Sarah:  This isn’t so much a conversation as a tale. I was a precocious teenager – and especially so during Science lessons with Mr Hill. I remember distinctly challenging him that Litmus paper had no function “in the real world”. And I almost feel like the gods above heard and banked that. Because many years later, I find out that Mr Hill was indeed right.  Litmus paper, it turns out, is really the most useful of inventions for checking if a nasal gastric tube is placed in the stomach. It tests the ph   level for acidity and the colour changes to let you know if you’re in the right spot. Who would have thought? Sorry about that Mr Hill. My teenage self has been well and truly corrected.

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Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Sarah:  With a top on Albie ‘looks normal’ so this isn’t such a problem for us as it is for others.  When he had his nasal gastric tube in I would much prefer people to ask questions than stare.  I imagine that’ll be true too when Albie has his chest ‘zipper’ out in public as well.  I haven’t had the cajones to do that yet.

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?  

Sarah:  That the present moment is all we have.  Which sounds a bit bleak but it actually makes me focus on loving harder and loving consciously each and every day.  We aren’t sure whether Albie will grow to 8, 15 or 50.   And to be honest, no-one can be sure of the future for their children either.  I’ve decided that all I can do as a parent is just witness Albie’s life, in all its awesome glory – for however long it is.

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Miggy:  If you could say something to the mom who just starting on this journey of special needs–specifically congenital heart defect–what would you say?   What would you say to yourself if you could go back in time?    

Sarah:  I would say to myself – “You can and you will do this.  Everyone has their struggles and today you will struggle.  But you will also become happier than you ever thought you’d be.”

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Oh my goodness… a huge thank you to Sarah for sharing her beautiful Albie with us.  I am grateful Sarah also chose to share these beautiful pictures with us, especially the one of a fragile, little Albie post-surgery–that gives us a small glimpse of what it is really like.  Most of us cannot imagine our child going through so much at such a tender age… and to contrast that with the last picture of a joyous, happy Albie fills me with awe and gratitude.  In doing these spotlights one thing I hope, is that you see your children in these children.  Not to put fear into your hearts about the ‘what if’s’ but to realize that any of these kids could be your kids… they are our kids.  And if we can look at people and children who have differences with the same tenderness we see our own children, I think that can do a lot to build more unity through love and compassion.  I also want to echo Sarah’s sentiment that the present moment is really all any of us have… and because of this realization she lives and loves more fully and consciously.  There are always gifts among the ashes aren’t there?  Thanks again Sarah… and I fully enjoyed your delightful New Zealand slang.  🙂

 

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