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!

One is FUN!

A few dozen new toys, and a million calories later, we survived the big First Birthday weekend. Baby J was in top form, and loved having all the attention, even if he did get a little overwhelmed and cry when we sang Happy Birthday! Ooops!

With all the worry that we've been through over his hearing lately, we decided that we had to have a big party to celebrate his birthday and focus on all the positives with him, and there are many. I want to look back on this stage in his life and remember it as a happy time, not an anxious time. A time full of the changes we're seeing in Baby J, and the excitement of each new milestone he reaches.

This little man is such a bundle of fun, and is really starting to come out of his shell and hold his own against his sister. Before now, due to Miss E being much more vocal and demanding of our attention, Baby J tended to be a bit of a passive observer really. I feel guilty periodically that I don't seem to give him the same amount of attention as Miss E got at that stage, and that I take advantage of his easy going nature and let him amuse himself perhaps too much. People assure me that this is the normal dynamic in a home with more than one child, but I still feel guilty.

These days, he's getting very vocal. Babbling away, and having full scale 'conversations' with himself every morning in his crib - I hear him over the monitor. I am focusing on these as very good signs that as of now his hearing is plenty good enough, and that he is definitely in line with normal speech development. He is even attempting 'Bye Bye' which sounds more like 'Buh Ba' accompanied by his waving arm.

Several people have asked for updates on our ongoing journey to get to the bottom of J's hearing tests. So far we have had CT scans come back clear, and blood testing reveal that he has a genetic cause for the already identified hearing loss. What we still do not know at this point is what exactly this means in practical terms for J, and what the prognosis is. He has to go through another sedated hearing test next week which will reveal if we are now dealing with hearing loss in his right ear, too. If this is the case it will be a very worrying development and I'm pretty anxious about it. We also meet with clinical geneticists and a pediatric neurologist this month. What exactly they will do, I have no idea. We are just going through with all of the audiologists recommendations in the hope that we get to the bottom of it, determine exactly what we are dealing with and we ask God for the grace to deal with the outcomes along the way. To be honest, I have no idea whether these visits with all these 'ologists' (count them - pediatric neurologist, audiologist, otolaryngologist, speech and language pathologist), is standard protocol following the diagnosis of sensorineuro hearing loss, or if they really suspect that J has issues in all of these areas! It's been a little overwhelming to say the least - but I am now armed with a folder, written questions for each doctor and a determination to leave no stone unturned in terms of finding out what's wrong and what we can do about it.

At this point, I am trying my best to focus on all these positives, and hope for the best - that is that this hearing issue remains as minor as it is now, and does not progressively deteriorate. At the same time, I have to try and prepare myself for news that I don't really want to hear in the hope that I can accept it and move forward positively for Baby J.

Above all, I do not want J to ever feel sad about this, or feel that he is or will be disadvantaged in any way. I want him to see me as a mother who will take on the world on his behalf, and later take it on with him, so that even later he can go out there and take it on himself!

Some days it's hard to be a Mom.

After another trip to the Audiologist with Baby J, today hasn't started off well for us.

Back when I wrote this, we were looking at a mild deficiency, a hearing loss at 4000 htz (higher frequency) on Baby J's left ear.

Today the Audiologist is concerned because he's showing the same deficiency in his right ear. A change. A detrimental change.

I'm trying hard not to, but can I tell you that I am FREAKING out here? My head is spinning with questions - 'why is this happening?', 'what is causing it?, 'is it going to get worse?', 'is it going to get better?', 'is it just going to stay the same?' - questions that may be answered by an ENT specialist. A specialist that the Audiologist recommended we see when she last tested J in May.

Through a series of communication snafus we have only just managed to schedule his appointment with the Pediatric ENT specialist for next week. Three months since his last appointment and we're only getting around to it now.

Complacent in my 'it's only a minor issue' attitude, lulled into a sense of security by the Pediatrician and the Audiologist herself who claimed that a moderate loss on one specific frequency is nothing to be very concerned about - he'll probably do just fine, I didn't stay on top of the evidently incompetent support staff at the pediatrician's office, and so all these weeks went by without me questioning why they hadn't scheduled the ENT appointment for us. Maybe I just wanted to fool myself that he was fine, we'd get to it soon enough, and he'd turn out to be fine.

Procrastination has bitten me in the ass and I want to smack myself because this time it involves my son's health and that's a bloody serious thing for me to be so damn complacent about.

Did you know that hearing loss is the number 1 birth defect in the USA? So I'm told by the Audiologist. And my son has it - a defect. I hate medical terms. Defect? He's not defective! He's my beautiful, happy, loving, baby boy!

After telling me she didn't like the readings she was getting in the right ear, and recommending that we have him undergo another sedated ABR test (he'll be put to sleep so they can monitor brain response to auditory stimuli - for the third time!), the Audiologist looks at me and says,

'Mommy, I don't want you to be real worried about this'

WHAT?

You tell me that his hearing is now affected in his right ear - which was perfect up until now - and my mind is racing wondering if he's going to have progressive hearing loss, I feel physically sick to my stomach at the possible scenarios, and I am afraid, scared of what is unknown about what's going on with him and you tell me not to WORRY?

Sorry, I haven't mastered that particular skill yet - he's 10 months old - I will worry every waking moment and then some!

We see this ENT guy next week - for tests, examinations, head x-rays and blood work. More crap and procedures to put him through. We will also talk about the genetics of it all, apparently. Confused about the genetics element I asked the Audiologist was this just to determine family history (which we've given, in detail and there is no significant family history of hearing loss in either family!), is it for genetic counseling? She responded and said no, that it was to determine if he has a 'syndrome', of which hearing loss is only one element. Kids with these 'syndromes' can have eyesight problems, kidney problems, other physical issues - I think I wanted to throw up right there - I think I still might.

My husband is telling me to relax and wait to see what Monday brings. To think positive thoughts and not necessarily focus on all the potential negatives. It's hard - again it's because I can't stand not knowing - I need information, and while I have learned my lesson the hard way in the past that searching the internet for this information is a BAD idea - I really, really want to - I want to know, now!

More than all of that, I just want someone to tell me that he'll be alright - that it'll all be just fine.

Nobody can.

My poor, 'drunk', cranky baby boy.

My seven month old has been monitored pretty much since he was born for a possible hearing deficiency in his left ear. To date tests have always concluded with the Audiologist saying 'I think there might be a mild hearing loss, we need to do more tests to figure out what and where this loss is'.

Today she figured it out.

He had a sedated ABR (Audio Brain Response) test, where the nurse gave him disgusting medicine (chloral hydrate - and yes, that is what Anna Nicole died from!), to get him, and keep him asleep. This is the second test like this he's had, since the first one couldn't be completed as he woke up before the Audiologist could finish her measurements.

He did a lot better than me and took his meds like a champ, but watching your baby go all limp and floppy in a matter of minutes is alarming, when you're used to seeing them gently lull off to a gradual and easy sleep.

Watching his head scrubbed and electrodes attached on his forehead, and around his ears, and looking at him laying there with wires from his head, his ears, and the monitoring devices attached to his feet is hard. Watching the look of concern on the face of the nurse and nurse practitioners when his oxygen levels aren't what they should be nearly makes me throw up.

I found myself choking back the tears and telling myself, 'this could be worse, lots of other moms deal with much worse things, count yourself lucky this is not some horrible, life-threatening situation you're in.'

Then I find myself asking 'Why should I choke this back?' - yes I know there are worse things, but it is still horrible watching this kind of thing happen to your baby, to find out whether or not he has a 'problem', and projecting about what that 'problem' will entail in the future.

I have stayed at home today and let him sleep, and cuddled him (as much as his sister will allow) when he's been awake. He's still floppy, acts like he's 'drunk' and he's getting cranky at times which is very out of character for him.

Today's findings are that he has a moderate problem in a specific hearing frequency. Definitely not a major issue, and hopefully not something that will require major intervention such as a hearing aid. It's still hard.

We now have to set up consultations with ENT specialists, and a Geneticist to find out what if anything has caused this and whether or not it is likely to get worse. He'll also be referred to an 'Early Start' program (whatever that is?) to monitor his speech development. I know these are all good things, that this has been detected early, that he'll be monitored in case it deteriorates and intervention can take place as appropriate. It also gives me a heads up that if there is a genetic reason that I can watch for issues in my other child. I still hate it.

I hate that I have to keep taking him back for more appointments.

I hate that he has to see more specialists.

I hate that they talk about hearing loss.

I hate that when trying to explain all of this to people they think something is 'wrong' with him.

I hate that my sweet, placid, loving, baby has to be poked and prodded and put to sleep.

I hate feeling like this is somehow my fault. Did something happen in utero?

I hate that he's all floppy still from the medication, and although he's trying to smile through it, more often he's looking at me as if to say 'what happened to me mom?'.