Tuesday, January 21, 2014

Parenting When Your Child is Sick: Finding Strength You Did Not Know You Had Until You Were Put To The Test.

It can be tough being a parent, even when things are going well.

Juggling your children's meals, activities, learning, moods, hormones, social lives and school schedules along with your own, can be challenging at the best of times.

So when something goes wrong for your child, that may affect them for a lifetime, only then do you realize where your strength lies and how it re enforces what it means to rise to the tough task of parenting.

Living in Hong Kong in 1999, at the age of 3, our middle son Aron was diagnosed with a rare developmental ( acquired) cataract in his right eye. 

This meant he could barely see the big A on the screening board.

On an arduous journey to find the best outcome, we found ourselves in London at Great Ormond Street Children's Hospital consulting the internationally renowned pediatric ophthalmic surgeon, David Taylor. 

Within a few hours of being examined and the doctor ascertaining that Aron was a candidate for surgery, he was prepped and a new false lens was inserted to replace the damaged one, in his right eye.

I'd love to tell you that was the end of the story, but really it was just the beginning. 

It was this new phase that re enforced for me what it truly means to parent. To love unconditionally, advocate, stay strong emotionally, be consistent, fight your flight instincts and keep your eye on the goal, all for your child's long term well-being.

Since Aron's right eye had been compromised for an undefined amount of time, the pathways from it to the brain had gotten lazy with under use.They needed to learn again how to transmit information from his eye to the brain and his brain had to learn how to 'see again'. With all the advanced technology available, it never ceased to amaze me that a simple patch, that stuck like a band-aid on his eye, was what would possibly help Aron do so.

But even that was not the biggest stumbling block to Aron regaining his sight. 

As the surgeon explained to us, getting the patch on every day and Aron keeping it on, was the key to success.  If we did not patch him every day for 16 hours ( to begin with) he would not learn to see at all with his right eye.

The doctor went on and explained ( and I have never forgotten his words.) 

"You have 2 choices....

Patch him every day, and you will give him the greatest opportunity of improving his sight.......

Or explain to him when he is 18, that you were unable to do so and that is why he is blind in one eye."

I knew then, that I couldn't live with myself if I had to explain to Aron at the age of 18 that due to my weakness as a parent, I had not managed to patch him and that was why his right eye was unusable. 

And so the challenge began. 

Have you ever tried to restrain a rambunctious, single-minded toddler in someway, when they didn't want to do something? When they fought you at every turn and ran and hid?

That was my daunting, exhausting, relentless task.

Getting that patch on his eye every morning and making sure it stayed there until bed time.

There were days we both crumpled in tears from my chasing him with the patch and his refusal to wear it.. 

Days when my heart ached from watching him have his nose pressed to the paper on his desk, to see what he was drawing, because his good eye was patched. 

Days when I would wake up and wonder if it was making any difference at all. 

Days when I put him on the school bus, patched and angry and my friend Tami, comforted me as tears ran down my cheeks.

The doctor's words never left me and at Aron's first checkup, he had made a real improvement. Patching was reduced to 14 hours a day and on we went. 

We had easier days, where the patch went on without a fuss and more difficult ones, when the patch was the last straw for him, because he felt unwell or frustrated or just plain fed up and exhausted with the challenge of spending most of his day finding it difficult to see. He just wanted to be like all his friends and I desperately wanted that for him too.

With consistent patching, Aron's sight improved steadily and a year and a half later, as much to the British surgeon's amazement as ours, his vision was 20/20 in both eyes.The doctor reported that many parents do not see the process through and he hardly ever saw such a perfect outcome.

Now, this little boy is our 18 year old resident EMT and firefighter. His eyesight taken for granted, as he strides through college or climbs onto the firetruck for his volunteer shift.

Why am I telling you this story, apart from it being one that gives hope and a happy ending?... Because what I have also learned is that a parent's tenacious strength, patience, belief and love is needed again and again when raising children.

 Our children are relying on us to take on the fights and arguments and refusals that come along, especially when they don't want to do things that are truly in their best interests. Particularly when it comes to their health and schooling and relationships.

This morning, I recounted Aron's eye opening story to Jacob, my 13 year old. Because Jacob is now grappling with a health issue of his own, that makes it very tough to go to school when he doesn't feel 100%, but really important that he does so. 

And so we have told him, his father and I have to be the parents who will advocate for his needs, knowing that he may not agree that they are in his best interests right now.

And we will also cajole, encourage, hug and push him to make sure he has the best outcome. 

It's exhausting, demoralizing, frustrating and relentless and sometimes  he cries and I cry.

But It will mean that when he's 18, I can sit him down, look him in the eye and tell him, from the bottom of my heart,  I did the best I could for him as I did for his big brother. 

Tell me about a time you found strength as a parent, you didn't know you had. What helped you most? What was your biggest challenge? What would your one piece of advice be to parents who are struggling?
Thanks for your feedback and for sharing the post.

Stay warm 

You May Also Find These Posts Helpful:

On Parenting: Showing Compassion and Teaching Resilience To Our Kids. Why We Need to Do Both

Confessions from A Hospital Waiting Room

Protecting Your Loved Ones From The Hard Knocks Of Life
Please email me at gilly@bringingbooksofcomfort.org or leave a comment on this post below. I'd love to have your feedback. 

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  1. Gilly,
    Heartwarming and touching. Parenting -- so difficult to do the right thing....

    This post reminded me of when Hannah was baby. She was born with severe hip dysplasia. She had to be in harness 24/7 -- so that she couldn't move her legs -- for the few months of her life. The real heartbreak came when she only had to wear her harness at bedtime. After discovering the freedom of movement, putting her into that harness at night was horrible. She would scream and kick, I of course would cry.

    Had it not been for that harness she probably would have ended up with surgery, or a limp, or not being able to walk at all.

    Hannah is our dancer.

    Love your posts. This one really touched me.



    1. Wow, Lisa. Putting on Hannah's harness at bedtime must have been so traumatic to do every night.It's hard to quantify the emotional strength that must have taken, to repeat over and over knowing she was going to scream and cry.Yet you did it knowing it was in her best interest and boy did it pay dividends! I love she's your dancer. Aron is the one in our house who can spot the missing earring, match up the difficult parts of the 1000 piece puzzle and find the book we've all been looking for. These moments confirm our parenting choices, though difficult, were the right ones. If only we had that information when we were doing battle!
      Thank you for commenting Lisa.

  2. This makes me cry. I feel like you are telling my story, as you know. So hard to be tough when I feel angry, afraid and sad. Its exhausting. I feel comforted and less lonely having read this.

  3. All your feelings are valid and understandable and the emotions are exhausting.You are not alone. Sending you big comforting hugs.
    Please email me gilly@bringingbooksofcomfort.org. We can talk some more. Gillyx

  4. I love this beautiful post, but I feel conflicted. I am often/usually too exhausted (after a long day/week of work, plus tending to the needs of our other kids) to do what I need to do with my autistic son - work on speech, behavior and reading/writing skills. I leave a lot of what I should be doing - as a parent - to school and our wonderful babysitter. Happily, he's making progress anyway, but I tell myself it would be faster if I would spend Shabbat afternoon reading with him instead of reading my own book and watching him out of the corner of my eye.

    I'm probably judging myself too harshly. I think we (mothers? parents?) all think we should be doing more than we're doing.

  5. Thank you! I understand the conflict. It's tough trying to balance all the competing needs you have and take care of yourself too. In these situations I don't think as the parent you have to DO everything. What you do need to do is to advocate and assemble the best 'team' your child needs including, doctors,therapists, schools etc to help you give your child the best chance. Then you need to monitor and coordinate.

    It sounds to me as though you have chosen a school and a wonderful babysitter who are helping your son make good progress. There's always more we can do, but being a rested Mom also has a positive effect on your child's environment and that of your other kids.
    Part of loving your child is thinking we've never done enough but we have done well enough, juggling their and their siblings/ other life commitment needs. You sound like a great Mom who's doing the best she can. Your children are lucky to have you! Gillyx

  6. Any single challenging event can be overwhelming to us as parents, but it's the day to day emotional struggle that can really break us down. Anyone dealing with special needs, health issues, or grief can attest to this. I think it's important to balance doing whatever it is that you need to do for your child with doing what you need to nourish yourself so you can be emotionally and physically available. It's okay to get help or take time for yourself. Nobody can give 100% of themselves 100% of the time, and the best thing any parent can have is the social support to get through life's difficulties!

    Forgiveness is also essential. There is so much guilt, anger, blame, shame to deal with, so forgiving yourself and others for not being perfect is needed in order to move forward in a positive direction.

    Thank you for this wonderful, inspiring post! It's so helpful to know that we are not alone with these feelings and struggles...

    1. You make 2 very important points.
      I know for me and for many other parents I talk to, the emotional relentlessness is brutal and self-care is essential. It's not always easy to find the time to exercise or the right person to talk to, but it's an essential investment of time. Finding others who are going through something similar is very helpful too. Isolation is a big problem if you are a full time caregiver. Having a sense of humor has been my biggest ally!

      There are no perfect parents or perfect children and no perfect solutions. So much of the finding support for your child is trial and error and as they change and grow so do their needs and support. Just knowing that will happen and it's ok is reassuring. But it's exhausting too and that's where we all need to remember it's vital to be kind to our selves in order to keep moving forward for our children's sake and ours.
      Thank you for contributing so greatly to the discussion and visiting the blog.

  7. This is beautiful. What a strong mother (parents) you are! Your children are blessed to have you. This is a fantastic post and I am thrilled that you shared it on the Healthy Life Linky Party! You are a gift. Have a wonderful week and to all of you posting, I send virtual {{{hugs}}}.

  8. Thank you for your lovely comment and support. I'm glad to link up with you. Anyone with elementary school kids should go and visit
    and www.stanleyandkatrina.com


  9. Thank you so much for sharing your trials as a mama! This is so helpful to know that we're all dealing with things out of our control with our littles! I appreciate your honesty in your posts. 'm glad I found your blog on the blog hop, am now tagging along, and can't wait to read more. Hoping you stop by to say hi sometime. http://wanderlust-wishlist.blogspot.com

    1. Great to meet you Karen! Yes. Parenting is one surprise after another....mostly good ones. However it's the challenging situations in our lives that often make us aware of how special the good times are.Thanks for stopping by.

  10. You could have been writing my story! Our second son Micah was born with a benign tumor near his right eye. Long story short we began patching when he was 3 months old and patched faithfully until he was 10. He got his first pair of glasses at 7 months. He would tale them off and crawl with them in his hands, chew the nose pads off and my personal favorites scratch the glass with his teeth while strapped in his car seat or throw the glasses quietly out the side of the stroller while out on very long walks. He is now a 15 year old that has full use of his right eye. Those first few years were tough. Really tough.
    Parenting is not easy. It's not easy to hold your child down while drs do tests or start IV's. It's not easy to make them patch for all of the hours of the day while watching them trip and fall because they cannot see. In the end it is worth it. All of those days of struggle and tears...
    I never wanted to tell my son he was blind because I wasn't determined enough to have him do what needed to be done even though he hated it.
    This is so good. I have to share you on the salt and light blog link up! Here is the link... http://raysofgraceandjoy.blogspot.com/2014/03/salt-light-9.html

  11. Bekki -thank you so much for sharing your story. You are one amazing Mom! I get the struggles you must have had to get and keep that patch on. It's fantastic that after all your hard consistent efforts your son has full use of his eye.

    Yes, parenting is challenging, particularly when we have to make our children do things which are in their best interests, but they cannot possibly grasp the enormity of why they have to comply or why it is worth the outcome.Caring for a small child who is very ill or needs surgery, puts parents in that position over and over.You really do find strength you never knew you had.

    Thank you very much for sharing this post on Rays of Grace and Joy. I look forward to visiting the site and also to being in touch with you! Gillyx

  12. This is wonderful, I have a good friend going through a similar situation, patching her daughter's eye to retrain the brain to use the eye that was ill... and it so hard for her. And by proxy hard for me to know how to support her. It's just helpful to hear another parent's story and how they trudged through.

    thanks for sharing with Salt & Light


    1. Thank you. It is emotionally, physically and mentally exhausting to keep up the momentum and consistently patching. I wonder if your friend has seen any progress in her daughter's eyesight. That definitely boosts your motivation and energy to keep going. You're a wonderful friend to be concerned about supporting her. I am sure that your consistent presence and care in her life makes a real difference and reminds her she is not alone....it's a long journey. Please feel free to share this post with her. She is welcome to contact me through my email if she thinks that would be helpful. gilly@bringingbooksofcomfort.org. Thank you very much for stopping by and leaving a comment. Gillyx

  13. Thanks for this post Gilly. Hearing about others struggles, makes mine not feel so lonely. Although I don't have a "sick" or "special needs" child, I do have one 'very special" mentally and emotionally defunct husband. I know that sounds bad, but when you have one of these, it feels like you are a single parent - when you are really not. It's all the time going with the kids with no help - and it weighs heavily.

    People always say that you are not given more than you can handle, but I don't think that's true. That's where the spirituality comes in. You might get it all on your place at once, but there is someone walking along with you - helping to pick up the pieces as they fall - and giving a few blessings along the way!

    Thanks so much for linking up with us.

    1. Lisa, that sounds like a very heavy weight you are carrying. I'm glad this post helps you feel less alone.

      Personally I do not find the "you're not given more than you can handle" approach at all satisfying. I'd like to scream and shout that many of my friends have had way more challenges than they can or should have to manage.

      Struggles can leave you feeling isolated and finding that your friends, your spirituality or another kind of support eases that burden is very comforting.I'm glad your faith gives you strength. I hope that the many connections you have via your blog are also a help to you. You're an amazing, talented woman but it doesn't mean you should have to shoulder the burdens alone.

      It's a pleasure linking up with you.

  14. Hi Gilly,

    Thank you for this post! I just googled "finding strength child surgery" and selected your piece first from the result list. How curious to find that yours happened to be about your toddler sons right eye surgery and amblyopia. Alas, life has her tricks.

    Our son, Malcolm, incurred a serious corneal laceration to his right eye last fall and had emergency surgery to suture it. Incredibly, his lens was not damaged. More incredibly, he is cooperative with his 4 hours of patching each day. These are our miracles. We are now facing decisions about which surgeries to do next. Do we have them repair the iris with the risk of causing cataract? Or do we just do eye muscle surgery and see if it helps align the very differently seeing eyes? Malcolm is amazing.

    I experienced a truly miracluous form of presence when the injury happened, which I am so grateful for as it allowed me to be really present with Malcolm as he went into, came out of and recovered from surgery. Eight months into it, and I am reaching my exhaustion point. Even with a lot of support, I am so afraid that I will reach my breaking point and lose my ability to be present to my son as he experiences these hard and potentially scary things.

    It was very helpful to read your story and gain perspective on both the variety of experiences with amblyopia, and to hear from someone on the "other side" of this story, to be reminded that a time comes when one has moved all the way through it. Trying to balance the decisions of his physical health with his psychological health is what weighs most heavy on my mind. It is helpful to hear that this is just the way of parenting. I want to find something to fix it for us all now, but amblyopia doesn't work that way.

    I think I will move forward with trying to be a little more accepting of the notion that my exhaustion I s not here because I'm doing this incorrectly. I will continue caring for myself simultaneous to caring for my son, but for quite some time, that may include a good cry every week (or day).

    Thank you,