Not alone

My oldest son was diagnosed with autism on Tuesday.

I don’t quite know what to do with the diagnosis yet. It sits in my chest like a stone, hard, heavy, painful.

He’s been under the neuro-developmental team for 18 months, and we’ve known for at least three years that there was something going on. We’d kind of wrapped our heads around it being ADD, and felt he had some autistic traits, but because he’s doing so well academically, I suppose we had ruled out a diagnosis of autism.

And I’ve realised that I’m the kind of person that holds onto hope, however unlikely it seems. I want to believe the best, I want things to work out, sometimes to the point where I won’t accept the obvious fact that something isn’t working out.

I mean, when your 11 year old is rolling round on the living room floor, crying and screaming because you’ve told him he can’t have any more X-box, you’d think it would be obvious that something was not quite right.

Still, it’s hard to accept. He’s my son. I want the best for him. I want a happy, simple life for him, with a good job, marriage, kids.

Suddenly all those things are looking less likely, perhaps even less possible.

So I’ve come back to this blog (after a looong break) to try to process it all. I suppose I’m aware that lots of other mums are going through the same thing, and will go through it in the future. By putting my journey of acceptance out there, then perhaps I’ll help someone else.

After the meeting with the consultant, after driving my son home and picking my other kids up, and cooking tea … my first big concern was how autism would affect my son’s acceptance of Jesus and the gospel.

We’ve already encountered some problems. I mean, he has a really hard time accepting that he might be wrong, so wrapping his head around personal sinfulness might be hard. He seems to struggle to engage with the church service (we go to a more charismatic-leaning church at the moment, so emotions are high on the agenda) … he doesn’t like to sing, and just wants to draw Sonic the Hedgehog through the sermon. He also checks out during our family worship times, or cracks silly jokes and distracts his brother and sister.

Can he even become a Christian, I feared. The obstacles just seem too high for him.

Almost immediately I felt the reassurance of God. Nothing is too hard for Jesus. He has defeated death, sin, hell, Satan. Autism is no obstacle to him.

Jesus can save my son. It’s a spiritual work, not mental or emotional (though of course the Holy Spirit will transform those things as he works). And maybe my son will always struggle with aspects of church and spirituality. But Jesus has a special place in his heart for the broken, the weak.

So my first fear was laid to rest.

 

My heart for you, if you are a fellow mother, struggling to accept your child’s future, is for you to press closer to Jesus. He is so strong, so good, so kind. I know it might not feel that way right now. But he is. He will sit with you while you weep; he’ll weep with you in fact. He knows this world is not the way it should be. You are not alone.

 

Pregnancy after trauma

Today some wall stickers arrived that I ordered for our baby girl’s nursery. I also ordered some furniture paint online so that I can freshen up our baby furniture (which is looking decidedly tired after serving two little boys).

Anyone who has not known the trauma of a high risk pregnancy and delivery can have little understanding of the faith required to do these small, perfectly normal things.

My first pregnancy almost ended in tragedy, for myself and my baby. I developed aggressive pre-eclampsia early in the pregnancy. My son had to be delivered at 30 weeks by emergency caesarean section. Both our lives were put at risk, and the decision to have another natural baby (rather than adopting) has been very difficult. My second pregnancy ended with a natural, full-term delivery. I had hoped this third pregnancy would be different. That I’d be able to relax and enjoy it (as far as pregnancies can be ‘enjoyed’!)

So far I’ve been as anxious as ever. After wading through weeks of severe sickness, I’m now, according to the pregnancy websites, meant to be enjoying the second trimester ‘bloom’. Instead I feel as though my body has decided to skip over those happy middle weeks when women are pictured jogging on the beach, playing football with their children, and generally enjoying a burst of energy, and go straight to the third trimester.

My stomach has expanded to the point that I feel ready to burst, and I am heavy and uncomfortable whatever I do. I have anaemia, and literally could sleep at any point in the day, even after an hour’s nap. I still get waves of nausea, and seem to have no immune system whatsoever.

But hard and jagged under all this is a bedrock of fear that I cannot seem to shake. It makes the niggles of pregnancy seem minor. I tell myself that I have successfully carried one baby to term, and this reduces my risk of pre-eclampsia. I tell myself that the chest pain is just heartburn, that the palpitations are anaemia, that the exhaustion is perfectly normal for a woman in her early thirties with Crohn’s disease.

I am not convinced. Instead, I am not expecting to go full term. I am waiting for something to go wrong. Sometimes I feel my daughter kicking and feel that she is struggling for life. I imagine her wrestling for oxygen as the placenta reluctantly surrenders what she needs. I feel like my body is a hostile environment for her; who knows whether my immune system might start reacting again and prevent her from growing.

So I bought stickers for her nursery and paint for her cot, but with a lacing of fear about the decision. I wonder if these things will one day bring me pain.

I am aware that today I have let go of my ‘life to the full’ motto. I am allowing myself to listen to the whispers of the demon Fear. I am finding it hard to listen to the voice of Christ, which says, ‘do not be afraid’.

So I remind myself that I am here on his business, not mine. I am here today, and today my job is not to worry but to let Jesus live in me. I am here to be his hands and his feet.

And I pray that my little girl will live and grow and become his servant also.

Some news and thoughts on care during pregnancy

I’ve been rather quiet for a few weeks. I have been a bit preoccupied … I’m actually pregnant with our third baby, and I’ve been contending with morning sickness, tiredness, and grumpy children!

I’m now 19 weeks and through the worst of the sickness (though it still comes in panic-inducing waves) and being pregnant again has made me reflect a bit more on my other delivery experiences.

My first son was born at 30 weeks gestation, and spent the first five weeks of his life in hospital, fed by tubes and kept alive (for a week or so at least) by machines. He did really well, but nothing can quite prepare you for that experience of having your helpless newborn isolated from you in a plastic box, wearing an arterial line, and having to leave them there every night.

I try to suppress the memories, but if I’m honest with myself, I’m terrified it’s going to happen again.

My second son was born naturally at almost full term. I had no pre-eclamsia, or other complications. But that’s no guarantee that it won’t happen again.

This time around the medical professionals seem quite unconcerned. I’m basically being left to cook. I’ll be scanned regularly from next week to make sure the baby is growing well, and like all pregnant women I’ll have my blood pressure and urine checked routinely, but today I’m feeling very uncared for. I think what has struck me most lately is the massive difference that a single medical professional can make to their patients.

I suppose what I want to do here is appeal to medical staff caring for pregnant mothers who’ve had traumatic deliveries in the past. It doesn’t matter if right now she is ok. That mother will be haunted by the terror of having her own life and the life of her fragile baby hanging in the balance. She remembers the bleeping machines, the tubes of blood, the wires, the alarms, and the fear. She remembers the smell of the hand gel on the ward, and just a whiff of it now makes her feel sick. She remembers the feeling of empty arms, and the ache of coming home to an empty cot, once full of expectation, now overflowing with anxiety.

Be gentle with her. If she is worried, acknowledge her fears instead of just dismissing them.

“I understand why you’re worried,” would be enough. With a little gentle reassurance: “But we’re going to take good care of you.”

Listen to her fears, even if you think they are unfounded. Chances are she’s been researching online whatever landed her baby in the NICU, and has come across the many exceptions to the rule that exist. Besides, even if her risk factor of it happening again is only 1%, to a mother that is 1% too high.

Don’t tell her that the slight rise in her blood pressure over the last few appointments is due to her anxiety. This is not going to help her relax in the slightest.

Don’t tell her that you have no idea why she feels breathless and nauseous because her iron levels are fine. At least suggest further investigation.

When she says that actually, she’s not felt very well through the whole pregnancy and sometimes feels as she did when she had complications, listen and acknowledge, and show some concern.

Do make eye contact and be patient. I know you are under time pressure, and probably have a list of patients the length of your arm. I know you may not have had a cup of tea for a few hours, and perhaps you had to skip lunch today. I know the pressures that rest on medical staff these days.

But this woman might have been waiting desperately for this five minutes of your time to be reassured and listened to. She might have fears that she cannot express to anyone else because they do not have the expertise to help her. Just giving her time to express those fears can help her massively.

You could be the difference between a mother feeling confident and safe, and sobbing in the car park because she feels all alone and that no one is listening to her.