Friday, October 19, 2007

Serenity and Perspective

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

Reinhold Niebuhr

How many times have I worried until I felt physically sick about issues that are beyond my control? That they are beyond my control, a source of further anxiety.

How many times have people said to me 'Try not to worry', 'Think Positive', 'Put your trust in God'? How hard have I tried to listen to them, but still had that ball in the pit of my stomach, the tight jaw and the headaches because no matter how hard I tried, I couldn't let the stress and the worry go?

How many tears have I shed? How much anger have I felt?

Too many. Too much.

I have seen the Serenity Prayer many times. I understand its premise. I know the 'theory' of handing over the worry, but couldn't practice it. Until now.

I've written before about how it feels when doctors tell you that something is not 100% with your baby. An issue that has been present from birth and that needs careful monitoring. It hurts. As someone recently said to me 'it hurts a mother's heart', and it does.

Readers familiar with my blog will have read my stories before about our ongoing journey with Baby J and his hearing. A quick recap for those of you not familiar - a problem was detected with his hearing at birth and several hearing tests later confirmed mild hearing loss in his left ear. In August they were concerned that there was a change in his right ear. We are seeing a slew of specialists, and had a further hearing test this week to investigate the right ear further.

Since August I have been stressed out. I cried every time I told someone about what was going on. I felt frustrated that doctors were elusive, and tests weren't telling us anything. I was traipsing around to doctors appointments, my husband was taking time off work to come with me, and we had to trail Miss E with us a lot of the time (which anyone with a bored 3 year old will know, can add another stressful layer to the whole scenario). I literally was making myself physically sick.

Then, sometime before Baby J's first birthday 2 weeks ago something clicked. I essentially made a decision that I was not going to worry any more. I prayed the Serenity Prayer, but now I really meant it, and it helped. I have handed the worry over. I am powerless to influence how Baby J's hearing develops or does not develop. What I need to do is focus on the positive, and on the actions I need to do to make sure we stay on top of it and are ready to help him as soon as any 'extra' help is needed.

Going through the process of trying to first identify a suspected problem, quantify it in terms of severity and prognosis, and determine the cause is a daunting and stressful one. We deal with professionals with varying degrees of sympathy or compassion (never empathy, so far). But, while we are on this journey, I have learned, albeit the hard way, that there is nothing to be gained from worry.

Many people, the medical professionals, family and friends tried to tell me this, but I didn't listen because I was too caught up in what was basically a grief process. I look back now and I see how we (my husband and I) have gone through the denial, anger, bargaining, depression and have moved to acceptance.

We had two good appointments this week, and that sort of feels like a reward to me. The prize for finally 'letting it go'!

We saw a Genetics doctor on Monday. She was excellent and took time to answer all of our questions and concerns. She was able to rule out many genetic syndromes of which hearing loss is one element. She also pointed out that our understanding that J had inherited an autosomal recessive condition from us was inaccurate (thanks to the nurse in the ENT's office jumping to the wrong conclusion). J is a carrier of a gene that causes hearing loss, but at this point that is purely coincidental. So we still don't know the cause of the hearing loss. We may never know. For me though that is a secondary issue. My primary focus is Baby J and what his little ears are doing now and what will happen as he grows.

There are few more genetic syndromes that the doctor wants to rule out and so we will take Baby J for a renal ultrasound and an EKG on his heart. More tests! However, I am not worrying about these - I'm hanging on to that serenity!

Baby J had another sedated hearing test on Tuesday which brought the news that his left ear (the one with the originally identified problem) is still the same - so that's stable, no deterioration at all. Good news!

His right ear is showing a change, but it's a very subtle change, and not one that the audiologist is concerned about as of now. And neither am I. While it's not great that she confirmed this change in his right ear, this certainly wasn't gloomy news at all, I'll take it and will continue to pray that it stays stable and J's hearing will not get worse beyond this point.

As of now, Baby J's hearing is completely adequate for normal speech and language acquisition, which has been the primary concern regarding this hearing loss. If he does not hear all the speech sounds around him correctly, then of course he would never learn to reproduce them correctly without intervention.

No intervention is required at this point. We are happy about that, and remain cautiously optimistic for Baby J.

If he needs intervention at some point we'll get it for him. We are 100% on board with the ongoing monitoring. This is a 'happier' place to be than the denial and anger that had us questioning the diagnosis, and the need to be seen by all these specialists.

Perspective is also a wonderful thing, and something that helps me. The knowledge that what we're dealing with, while the fear of the unknown has definitely been there, it is relatively minor. We have been to a Children's Hospital a few times to see doctors, and specialty clinics with Baby J and it is an eye opener in terms of seeing the trials that other families must endure. I pray for all those families, those parents, and for all those mothers. I also pray in thanksgiving that my Baby J is so healthy and that we just have one area to which we need to pay special attention.

We now have a better understanding of why we've been putting Baby J through all these tests (reasons that were not immediately clear while we were undergoing them to be perfectly honest), and that helps give perspective to the journey we continue to move through, and the upcoming tests. While no-one has explicitly told us this, we believe that it is a by-product of the medical legal environment these days that doctors must disclose all the possibilities stemming from a hearing loss diagnosis and follow through with the appropriate tests to either confirm or rule them out. This 'disclosure' I could have done without because none of it ever came with any kind of statement on how likely or not it was that Baby J had any of the conditions to which they referred. Enter over active parental imagination and you have an explosion of panic, stress and fear.

With my new found serenity and perspective I will not give into the panic, stress or fear anymore. I will not be miserable with worry any longer, and I will continue to enjoy my child for the wonderful, happy, cheeky little guy he is!


Anonymous said...

Because it's all about letting go...even if it's just a little at a time...(something I am finding very difficult)

Good for you. I am proud. Of YOU!

I hope it all works out with Baby J and you find the answers that you need.

Jessica @ A Bushel and a Peck said...

I'm so glad for you. I was wondering what was going on with Baby J. I have often used that same prayer to try to let stuff go. Sometimes it works, sometimes it doesn't...but it can't hurt to try. Sending hugs your way!!!

Self employed mum said...

Well I think you have covered eveything yourself. Although people tell you not to worry, it's only natural, part of being a mother. They don't tell you that as you give birth 'You will now worry for the rest of your life!' There will always be something to worry about. x

pinks & blues girls said...

I am so glad you have started to feel some peace. "Letting go" is very often easier said than done. But it really can bring relief. Thinking of you and Baby J.

Jane, Pinks & Blues

Deborah said...

So glad you are feeling more at peace with things Annie. Sounds like those appointments were good news and that you guys are taking the right perspective on everything! Good for you.

dawn224 said...

I actually breathed in relaxation and relief while reading this. Such good news for you.

andi said...

I've been trying really hard lately to let go of guilt and worry too. But you're right - it's so much easier to say than to actually do. When I think about it though, it is completely counterproductive.

I'm so proud of you - I'm not sure if I would be able to be so strong and have the perspective you do. Miss E and Baby J are so lucky to have such a wonderful mama.

Feener said...

you are in my thoughts. i am glad to hear you are letting go and enjoying what you have. easier said than done. you are being proactive which is all you can do. thinking bout you !!

Jen M. said...

Honey, I know how you feel. It is so hard to let it go and just have faith.

That prayer has helped me many times, too.

I am so hopeful that all works out with Baby j!

Jennifer aka Binky Bitch said...

What a great post, I'm so happy for you and for Baby J! Finding peace and getting good news is just fantastic!

Iota said...

I loved reading this post - so thoughtful, self-examining, realistic. Very good news about Baby J and where he is at the moment.

As a fellow Brit, I think it's fair to say that the health services here do generate a lot more anxiety than if you're dealing with the NHS. I couldn't comment on the quality of the care itself - I'm sure it must be better than the NHS in many ways - but it comes with so much worry and stress. As you say, the medics always have to cover themselves by explaining worst case scenarios, and running every available test, and being seen to give you maximum choice. It does make it harder to deal with.

Also want to tell you that I am finding a thought you left on my blog a week or so ago very helpful. I keep returning to it. Am adding you to my blogroll for your pearls of wisdom!