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I seem to remember flashes of those moments surrounding the diagnosis. The days leading up to it, the visit to the pediatrician to confirm, waiting for hours in the emergency department, finally settling in upstairs for the long night ahead, the constant beeps and alarms throughout the night, my daughter asking the nurse every time she walked in to silent the alarms if she could eat, eating cold eggs the next day at the clinic, meeting the clinicians for the first time. But despite how much I can clearly visualize just thinking of and recalling, there are a lot of things that just didn’t stick. I think I asked our diabetes nurse educator the same questions daily for two weeks. There was simply too much information to process all at the same time. Too much to remember. Too much to calculate. Living day to day finally took on new meaning.
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I’m not intending this post to be contentious although I know the topic can be. So extreme health standards aside, here is my 5 & 5 for GF processed foods.
Starting with the positives…. What is Type 1 parenting? It is waking up to texts in the middle of the night from your teenager telling you she lost her case. Lost her meter, her lancing device, her insulin pens… Trying to calm her down because she is stressing out over it and that clearly won’t help her blood sugars but also trying to remain calm and not let her sense your worries. Your worries of how she will survive until she can get access to backups of all those items. Your worries of how much all she lost cost and how that is months of savings. Your worries of being able to replace the items. Your worries of how this episode will impact her self-management going forward. Your worries of how she will blame herself and let this negatively influence her self-confidence. Your worries of how you didn’t see this coming, how if only you were more diligent, you checked on these things more, you paid more attention. You begin to blame yourself convincing yourself you could have done more. So then both parent and child are secretly putting themselves down trying to move forward but stuck in a deep, dark, middle of the night hole.
You fill out lost forms online at 1am and try and convince yourself to get some sleep. But you toss and turn and toss and turn and can’t distract yourself from your motivation to find the lost supplies. You watch the clock waiting impatiently for 7am to come and start calling all businesses that might have found it. You spend the morning on the phone pleading with those you reach to help search for the item, and waiting and waiting on hold just to try and speak with a live person. You continue to fill out more lost forms online and hope that someone will check these on a Sunday. You continue to reassure her that it will all be okay and put your faith in the dexcom, even though the site has not been accurate, and you hope you will not get the “no data” warning before a spare meter can be located. You hope and pray that her backup insulin stayed the right temperature during travel and that it is still good. You practice your mindfulness to try and stay calm and in a positive state of mind. The situation is not unmanageable. The situation is not the worst it could be. She is still alive. Because really that is what this is all about. The T1D parent never stops worrying about their child’s life. Never taking for granted that it can be taken at any moment, and at the blink of an eye. That we can be so diligent to prevent that from happening but we may find ourselves in a moment unprepared and unable to make a difference. That it can happen so quickly despite our preparedness. I may not still go in my teenager’s room and prick her finger in the middle of the night, but as long as she is in my home I will continue to go in and make sure she is breathing and moving in her sleep. And when she is hundreds of miles away, I will have some faith carry me through, because sometimes that is all you can do. (more on the specific lost case on our instagram page) This one goes out to the fellow celiacs. Go buy a diaper bag. Sounds silly I know but hear me out… It all started with an email from my mother and a picture of a super cute Kate Spade “purse”. You see she lives in an apartment building in Boston with the most amazing neighbors. I’m always hearing stories of her mingling with the neighbors. So different to the experiences we have in our apartment buildings that leave us longing for that atmosphere of community that Boston so embraces. So it’s not uncommon for her building to look out for each other, or leave presents for each other.  She went on with excitement of all the “cool pockets and zippers”. She mailed it to me “fast” so I could enjoy it more during the summer.
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