Friday, 27 March 2015

My Beautiful (Vulnerable) Boy... (Age 4)

It was Adam's birthday, and I was racing down the A5 at speeds much higher than I'm prepared to admit publicly, following a phone call from the nursery manager saying my son's temperature was 41.8 degrees.  They were following emergency procedures and had stripped off his clothing, given him Calpol and two members of staff were sitting with him until I got there.  If his temperature had gotten any higher, he would have been in an ambulance.

I don't speed often, but a phone call like that on a day when I was at a meeting an hour's drive away from the nursery and speed compliance goes out the window...

It was ironic really because every year previously, Adam's birthday has been a very difficult one for both Chris and I.  We always want to celebrate our son's life and we cannot help but remember that his birthday is also the anniversary of his near death.  Both of us have, on many occasions, wondered how long it will take for the trauma to fade enough that we can just celebrate our son's birthday without looking backwards.  That morning had been the first birthday on which I woke up not feeling traumatised or on the edge of tears.  I can't say I was particularly impressed when my dear son decided to start his fourth birthday celebrations at four in the morning, but I was actually happy - and very aware of that fact.  

It felt like a good place to be, we gave him a "biiiiiiigggg huuuuuggggg" (his latest phrase, from Teletubbies) and helped him to explore his new "dark den".  For those who are unfamiliar with these, a dark den is basically a big blackout tent filled with sensory lights.  The idea is dual purpose - it provides a calming, dark place to help an autistic child calm down during a meltdown but in play purposes, it also allows him to explore with his senses - to experience different types of light and explore what light means.  In other words, it was an ordinary birthday morning, exploring presents and new toys.

Adam had been sick, having come down with a temperature on the previous Sunday, so we had kept him off school on Monday and Tuesday but he wasn't showing any other signs of illness, other than very broken nights - but those aren't unusual in his world.  With such limited communication skills, Adam can't tell us if he's feeling ill or if anything hurts so all we had to go on were visible symptoms and energy levels.  By Tuesday, he was bouncing off the walls and clearly completely bored of being at home, so on Wednesday, with a normal temperature, we decided to send him back to nursery thinking he would be fine.

That phone call plunged us both into panic mode and as I raced home from Oswestry, Chris raced back from his office in Stone.  Very unusually, that day, both of us were nearly an hour away from him and cursing that fact.  

By the time I got to nursery, Adam had fallen asleep in a pram but I was very grateful to see two members of staff sitting with and monitoring him, one of whom was the nursery manager.  As I held my hand over his chest, I could feel the heat radiating off him - clearly the thermometer had been accurate.  Standing in the nursery, I rang the doctor who asked me to take his temperature again - thankfully, it had dropped slightly but it was still 39.1 so she instructed us to give him neurofen as well and to bring him in.

This was a very hard moment for me because it was by then 1:20pm and I was leading a school Easter service at the church at 2:15pm with 200 children and over 200 parents.  I had no choice but to take Adam home where Chris was waiting, give him all the instructions he needed and go back to work.  I gave my mobile phone to our verger, asking him to signal me if Chris rang.  It was a horrible moment of desperately wanting to be with my son, but knowing I had a job to do.

By the time I got home, just after 3pm, they were back from the doctors and Adam was asleep on Chris.  By the time the doctor saw him, Adam's temperature had dropped to a nearly normal 37 degrees and, despite a complete examination, the doctor couldn't find anything wrong with him - ears, throat, chest, all normal.  

Unfortunately though, the doctor made an offhand comment to Chris (possibly not realising our history) that really shouldn't have been made.  Expressing his surprise at how high Adam's temperature had been, the doctor said, "Did you know that egg white cooks at 42 degrees?  The brain is made of the same basic material...."  I hope - I really hope - that he didn't realise Adam had neonatal meningitis and that, one of the many symptoms of his illness was an extremely elevated temperature or that the CT Scans taken in NICU showed brain damage as a result of the inflammation of his brain.  If he did realise that, then to say that such a comment was insensitive would be an understatement.  He's a good doctor, but we're new to the surgery, so even though all of Adam's notes are on the computer, I hope he just made a mistake through not knowing us well enough to realise the effect of what he was saying.

However, in the absence of any other symptoms, all the doctor could suggest was Calpol, Calpol and more Calpol and to ring if Adam's temperature rose again.  So Adam slept...and slept, and slept and slept.  3pm until 7:30pm, briefly waking to lie lethargically on my lap before going back to sleep at 9:30pm.  Anyone who knows us, or has read this blog over time, will know how unusual this is for Adam - he doesn't react to illness by sleeping, so that much deep sleep was incredibly worrying for us.  As a result, while he slept, all of my ability to cope and to hold it together abandoned me - I went to pieces, unable to stop myself from reliving the trauma of neonatal intensive care, of watching my son "shiver" with extreme fever and once more wishing I had known then what I know now about Group B Strep and so had been able to prevent my son's life threatening illness...and near death.  

Chris mopped up my tears, held my hand and ordered me to ring Wendy, even though it was out of hours.  We checked on Adam every few minutes.  Finally, allowing ourselves to sleep, the night was brief as Adam woke up at 2:45am and refused to go back to sleep until 4:30am.  We were both utterly exhausted and very much in survival mode.

Needless to say, now two days later, Adam is thankfully much better and it really must have just been a childhood fever, likely from a mysterious virus.  He's still having medication, now coughing so inhalers too, but is back to his usual energy levels.  Yesterday afternoon, he even came up to me and, for the first time ever, looked up and said hopefully, "School?"  

So this morning, I've sent him back to nursery after a long conversation with his teacher, and I'm confident that she will ring if he doesn't seem strong enough to be there.  

Four years old, and clearly still as vulnerable as ever.....as am I.

Sunday, 15 March 2015

Potential and Promise: Mothering Sunday

If you look around our churches, the images of motherhood you will find are really quite beautiful.  The most common ones you will see are of Mary and Jesus.  Typically, Jesus is either peacefully sleeping in his little manager or calmly sitting on Mary’s knee gently smiling and both of them with beautiful halos around their heads.  It’s such a peaceful scene… 

...It makes me wonder where I’m going wrong.   

Because one thing I can tell you for certain is that peace, gently holy smiles and halos definitely don’t figure in our house. 

In fact, if I’m completely honest with you, there are some days when I could quite cheerfully strangle my little cherub.   Days when he’s pushed every single button I’ve got…and then found a few more that I didn’t even know I had. There are days when I finally lose my temper and shout at him.  And then as his little face crumples, tears pour down his cheeks and he bursts into heartbroken wails because mummy is angry….my heart just melts and I feel so guilty.  I crouch down, sweep him into my arms and sign and say, “Adam, I’m sorry, Mummy was wrong.  Mummy loves you.”  

Many of you will know that my son is disabled.  Hearing impaired, visually impaired, autistic, asthmatic, developmentally delayed and with severe behavioural issues.  Some of you will know that my first ever mother’s day was spent in neonatal intensive care, sitting beside my son’s incubator, still not knowing whether he would live or die. To say that motherhood hasn’t been straightforward for me would be an understatement.

For me, motherhood is defined by two key words:  Promise and Potential.  You see, no matter how difficult some of our days together may be, I Promise to extend absolutely unconditional love to my son.  It doesn’t matter how much extra care he may need, how many mistakes he may make or how long he will depend on me, my promise to love him is written in my heart and wrapped around every fibre of my being. 

Then there is the other word – Potential.  Having a child with additional needs means that my language and expectations have changed.  I don’t necessarily dream of my son going to university or getting a fabulous job, I dream about my son being able to hold a conversation with me, or being able to cope with life without screaming, thrashing meltdowns.  No one really knows what potential my son may have, but one psychologist recently told me that he will only ever reach one quarter of his expected developmental age.  If he's right, then that means that when my son is 40, he will have a developmental age of 10.

Promise:  I will love my son, no matter what. 
Potential:  Who will my son become?  How will he develop?

In our Old Testament reading today, we hear about another story about Promise:  “I will make with you an everlasting covenant, my steadfast, sure love for David.”  Covenant is another word for promise but it is one that is greater, stronger, and goes deeper.  A covenant lasts forever.  This passage is talking about King David, the man whom Jewish history has long since regarded as one of the greatest kings ever to reign in ancient Israel.  History looks back at the story of David’s life and sees his success, his legacy.  But there were many times along the way when it seemed as though David would never really amount to anything.  From humble beginnings, he made many mistakes.  But for this reason, the story of David’s life is also bound up with potential.  If you had seen where David’s life began, you could never have imagined where it would end. 

You see, David wasn’t born in a palace, far from it.  David was the eighth and youngest son of Jesse and they lived in the humble town of Bethlehem.  It was his job to tend the family sheep and tending sheep was reserved for the LEAST esteemed member of the family or the servant with the LOWEST status.  Sheep are smelly; they’re not particularly bright and there is absolutely nothing glamorous about taking care of them.

But, just as a mother who sees her child and loves them unconditionally, God looked at David and saw Potential.  The mothering side of God said, “it doesn’t matter where you are now son, what matters is where you will be.”  So one day, God speaks to the prophet Samuel and tells him to follow his directions to find and anoint the new king of Israel…and God leads Samuel directly to David…the least likely king in history. 

Throughout his life, David experienced some incredible highs – he fought the giant Goliath and singlehandedly saved the Israelite army, he reconquered Jerusalem and he led the Ark of the Covenant into the city.  But David also experienced some incredible lows, he spent years hiding and running for his life.  He was determined to have Bathsheba as his wife, no matter what the cost – so he murdered her husband.

If God really can be described as a mother, then there must have been times she put her head in her hands and sighed, “OH David!  WHAT have you gone and done NOW?”  But, God loved her son and God had made a promise – an everlasting covenant of sure and certain love for David.  And, like any good mother confronted with a child who has gotten themselves into a monumental scrape, God still saw the potential in David.  In the end, David remained king over Israel until his death at the age of seventy and he ruled for forty years.  Out of the 150 Psalms in the Bible, 77 are either written by him or dedicated to him.  And through it all, God stayed by his side, as committed as a mother is to her child.

So, you’ve heard part of my story.  You’ve also heard part of David’s story.  I wonder – what is your story?  What do you bring with you this morning?  For you, is Mothering Sunday a straightforward celebration of being a mother, of having a good mother?  If so, I wonder if you can see the echoes of a mother’s unconditional love in the way God cared for her son, David.  Perhaps, your story, like mine, may be a touch more complex – perhaps your experiences with the idea and reality of motherhood are joined together with pain.  Perhaps your story may include the pain of a human mother whose love was flawed and left you with scars.  Perhaps your story may include the desire to mother, but this remains an unrealised dream and so today, brings the pain of disappointment.  Perhaps you have held a child in your arms…and perhaps you’ve also said goodbye and so today awakens grief.  Perhaps your own mother is now held in God’s arms and so you are here to remember and pay tribute.

No matter what your story is today, I hope you can see in David’s story a description of love, and of promise.  I hope you can see a God who loves all of her children…including you and a God who cares about the joys as much as the hurts and seeks to hold them in her loving arms.  Mothering Sunday can be a very complex one for many people but no matter what your story holds, I pray you may be able to consider another element of our bible reading this morning:

“Ho, everyone who thirsts, come to the waters, and you that have no money, come buy and eat.  Come buy wine and milk without money and without price.”  This verse describes an incredible love and an incredible promise that is extended to all of.  You cannot buy God’s love, because it is available free of charge.  You cannot overuse God’s love because it has no limit.  God the mother sees the potential in every single one of you.  God the mother holds your story in her arms.  And God the mother promises an everlasting love…to you.


So today, whether you are here to give thanks for human mothering, or whether you need to cling to God’s mothering, let us join together in and offer a prayer for mothers everywhere. Amen.