Comments on: Coping With A Child’s Illness

By: Lindsey

Lindsey — Mon, 12 Dec 2022 06:41:02 +0000

I was so thankful to see this post. Elizabeth, I am so sorry that your daughter has been diagnosed with diabetes. Raising a child with a medical diagnosis is not easy.
My son was diagnosed with Cystic Fibrosis this year at 9 days old and we have been in the hospital many times and have had three ER visits. I worry about all of the medical trauma he has already endured and will endure in the future. I’ve been curious myself about how to incorporate gentle and respectful parenting with my child who has a chronic illness. His daily treatments can get overwhelming… this post was helpful in reminding me that I need to let him feel how he feels about his treatments and that I can be a gentle leader who assures him and allows him to feel. Even though it is really hard for me sometimes- I have to remind myself these are lifesaving treatments and drugs that he needs. Wishing you and your daughter the best on your journey.

By: Hannah

Hannah — Thu, 04 Feb 2021 03:28:31 +0000

In reply to Marilyn S. Type 1 diabetes is not at all the same as type 2. Type 2 is typically diagnosed in adults and is usually reversible or manageable through diet. Type 2 is caused by diet and lifestyle factors and is a result of insulin resistance -the pancreas is still producing insulin but the cells don’t use it properly... Type 1 is usually diagnosed in children and it is a result of the pancreas not producing insulin or not enough insulin. It is not reversible. Please be careful. Thanks!

By: Lisa Hepner

Lisa Hepner — Fri, 08 Feb 2019 22:47:22 +0000

I’ve been an avid reader of your posts, Janet, but this one particularly resonated with me. I’ve had type 1 diabetes for 28 years, and am intimately familiar with the emotional rollercoaster of living with this invisible disease. What I can offer to Elizabeth is hope and support. Hope that a cure will happen in Julia’s lifetime (hopefully before she goes to college, if that’s where she’s headed), and support through a wonderful non-profit I’m a part of called Beyond Type 1. Julia might like “Jerry the Bear” (https://beyondtype1.org/meet-jerry-bear/) that gives a young child a “bestie” who understands type 1. They are handed out in hospitals to newly-diagnosed kids.

Best of luck, Elizabeth, and take good care of you too,

Lisa
lisa@voxpopfilms.tv

By: Monica

Monica — Sun, 07 Feb 2016 03:58:13 +0000

I wonder if Janet would agree to allowing your daughter to help with her glucose checks? For example, you can ask her to retrieve the glucometer kit, choose which finger she will get pricked, open the alcohol packet and wipe her finger. Maybe if you allow her to help and have her direct her attention to preparing her finger then she is not watching you do it and waiting for the pain.

By: Natalie

Natalie — Sun, 07 Feb 2016 02:48:23 +0000

Some hospitals have child life specialists that are awesome at helping with the emotional part of a diagnosis

By: Zoe

Zoe — Sat, 06 Feb 2016 22:15:48 +0000

In reply to andrea.king@.

I’m so sorry you and your daughter are dealing with this, Elizabeth. I have type 1 myself, and worry about my kids getting it – I think that would be harder to manage emotionally.

I know you need emotional support right now, for you and your little girl, but I wanted to second the suggestion of insulin after food. The pressure of having to eat is awful! Insulin later means you can cover what’s been eaten. Much less stressful for all. Of course, you need to talk to your healthcare providers first, particularly in the early days, but know that eventually you and your daughter will know more about this disease and, importantly, how it plays out in your child, than any medical professional! You will work it out.

With very best wishes to you and your sweetheart.

By: Erika

Erika — Mon, 27 May 2013 05:18:52 +0000

My own experiences with one of my children, who was very sick and in the hospital near death many times between the ages of 10 months and 3 years, came pouring back as I read this letter. I remember being in the ER with my son (yet again) at age 1 and struggling just to get him to keep his nasal canula in his nose. Without it, he wasn’t getting enough oxygen to his blood, so it was critical that he keep it in. I remember feeling the most empathy I have ever felt in my entire life as I looked into his horrified, big blue crying eyes. At that moment I said, “A, it’s OKAY to be mad. I’d be mad too! But you HAVE to keep this in.” At that moment he quit struggling and just cried, and in his little one-year-old voice said, “I’m maaaaa!” Those where the first words he ever spoke.

What that taught me was that empathy and validation are so critical for our children. They need to know that they are allowed to feel the way they feel, and that it’s okay to feel that way, regardless of the things going on around them and in them that they can’t control.

Much luck and love to this mama and all of you mamas with sick kiddos.

By: janet

janet — Wed, 23 May 2012 22:16:23 +0000

In reply to Deb. Deb, thank you so much for your corroboration.

By: Deb

Deb — Wed, 23 May 2012 09:07:25 +0000

I really love your website and your posts… I’ve learned so much. I did want to reply to this because I think what you said is exactly right. Validation, compassion, and empowerment are the keys to parenting in general but for a child with medical needs, these things are absolutely vital. Our older son had significant medical issues (more than I could ever type in a little note)… but we did our best to train him on his own equipment, give him choices about when he could do treatments (before or after certain things), let him have control over as much as he could in his life, and worked hard on helping him express his feelings, thoughts and ideas. It’s not easy, but it’s so very important.

By: Andrea

Andrea — Wed, 08 Feb 2012 14:47:22 +0000

One more thing that might help…when we were in the hospital and they first started testing his blood, I made up a little rhyme which I’d recite as they tested him:’ “quick prick so you don’t get sick!!” he then started saying it, and tbe doctor there said she was going to start using it with her toung rype 1 patients there..we kept saying it for a shile after we went home.