tag:blogger.com,1999:blog-3363712305146749297.post8120142606793478720..comments2023-12-17T21:45:17.581-05:00Comments on Brainstorm: Parenting When Your Child is Sick: Finding Strength You Did Not Know You Had Until You Were Put To The Test.Gilly Cannonhttp://www.blogger.com/profile/18393339396656670745noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-3363712305146749297.post-27655002243769688352015-08-07T14:44:18.142-04:002015-08-07T14:44:18.142-04:00Hi Gilly,
Thank you for this post! I just googled...Hi Gilly,<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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).<br /><br />Thank you,<br /><br />Whitney<br /><br />Whitney Rhiannon Tillhttps://www.blogger.com/profile/15892626613200200989noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-66843736248591920012014-03-09T21:43:23.082-04:002014-03-09T21:43:23.082-04:00Lisa, that sounds like a very heavy weight you ar...Lisa, that sounds like a very heavy weight you are carrying. I'm glad this post helps you feel less alone. <br /><br />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. <br /><br />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.<br /><br />It's a pleasure linking up with you.<br />Gillyx<br /><br />Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-26741450603662187242014-03-09T21:32:50.039-04:002014-03-09T21:32:50.039-04:00Thank you. It is emotionally, physically and menta...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. GillyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-61479712665752768662014-03-09T07:32:21.819-04:002014-03-09T07:32:21.819-04:00Thanks for this post Gilly. Hearing about others ...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.<br /><br />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!<br /><br />Thanks so much for linking up with us.Anonymoushttps://www.blogger.com/profile/15956044918626392909noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-29664264709164635192014-03-08T12:21:57.215-05:002014-03-08T12:21:57.215-05:00This is wonderful, I have a good friend going thr...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.<br /><br />thanks for sharing with Salt & Light<br /><br />Marissa<br />http://raysofgraceandjoy.blogspot.comMarissa Writeshttps://www.blogger.com/profile/02557910393774076893noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-32059371559314958992014-03-04T14:55:01.767-05:002014-03-04T14:55:01.767-05:00Bekki -thank you so much for sharing your story. Y...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.<br /><br />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.<br /><br />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 Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-38329472700922669802014-03-04T00:07:21.655-05:002014-03-04T00:07:21.655-05:00You could have been writing my story! Our second s...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.<br />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...<br />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.<br />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<br />Bekki@a better way to homeschoolhttp://abetterwaytohomeschool.comnoreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-21404310201036786062014-03-03T14:57:30.492-05:002014-03-03T14:57:30.492-05:00Great to meet you Karen! Yes. Parenting is one sur...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.<br />GillyGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-86420276520176426892014-03-03T11:11:59.006-05:002014-03-03T11:11:59.006-05:00Thank you so much for sharing your trials as a mam...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.comKarenhttps://www.blogger.com/profile/08305250730809633895noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-28406287135437299782014-01-24T08:51:28.016-05:002014-01-24T08:51:28.016-05:00Thank you for your lovely comment and support. I&#...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 <br />http://bloghoppingmom.blogspot.com/<br />and www.stanleyandkatrina.com <br /><br />GillyGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-60918474296583632912014-01-24T08:44:09.697-05:002014-01-24T08:44:09.697-05:00You make 2 very important points.
I know for me ...You make 2 very important points. <br />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!<br /><br />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.<br />Thank you for contributing so greatly to the discussion and visiting the blog.<br />Gilly Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-24327328474784576862014-01-22T19:20:18.637-05:002014-01-22T19:20:18.637-05:00This is beautiful. What a strong mother (parents) ...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}}}. Hummingbird (20SecondsWithMC)https://www.blogger.com/profile/06069347953785436510noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-62606971693489233782014-01-22T12:28:17.658-05:002014-01-22T12:28:17.658-05:00Any single challenging event can be overwhelming t...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!<br /><br />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.<br /><br />Thank you for this wonderful, inspiring post! It's so helpful to know that we are not alone with these feelings and struggles...Anonymoushttps://www.blogger.com/profile/15293585552581030910noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-9868684920355005022014-01-22T11:37:20.140-05:002014-01-22T11:37:20.140-05:00Thank you! I understand the conflict. It's tou...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. <br /><br /><br />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.<br />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! GillyxGilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-71528370456387037372014-01-22T10:04:47.813-05:002014-01-22T10:04:47.813-05:00I love this beautiful post, but I feel conflicted....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.<br /><br />I'm probably judging myself too harshly. I think we (mothers? parents?) all think we should be doing more than we're doing.tesyaanoreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-82102698705053934512014-01-21T23:48:11.023-05:002014-01-21T23:48:11.023-05:00All your feelings are valid and understandable and...All your feelings are valid and understandable and the emotions are exhausting.You are not alone. Sending you big comforting hugs.<br />Please email me gilly@bringingbooksofcomfort.org. We can talk some more. Gillyx Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-56776705648706061222014-01-21T23:31:01.120-05:002014-01-21T23:31:01.120-05:00This makes me cry. I feel like you are telling my ...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.Unknownhttps://www.blogger.com/profile/03046374724759244985noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-21552462912461110282014-01-21T23:17:36.613-05:002014-01-21T23:17:36.613-05:00Wow, Lisa. Putting on Hannah's harness at bedt...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!<br />Thank you for commenting Lisa. Gilly Cannonhttps://www.blogger.com/profile/18393339396656670745noreply@blogger.comtag:blogger.com,1999:blog-3363712305146749297.post-13498356688291425172014-01-21T22:24:52.888-05:002014-01-21T22:24:52.888-05:00Gilly,
Heartwarming and touching. Parenting -- so...Gilly,<br />Heartwarming and touching. Parenting -- so difficult to do the right thing....<br /><br />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.<br /><br />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. <br /><br />Hannah is our dancer.<br /><br />Love your posts. This one really touched me.<br /><br />xox,<br /><br />LisaAnonymoushttps://www.blogger.com/profile/08934059767210804953noreply@blogger.com