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.
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!