Receiving a Type 1 Diabetes diagnosis can be a scary and confusing time for a family. Coping with and managing the new condition can be both stressful and overwhelming. Finding a solution for carrying diabetic supplies shouldn’t be another worry. We at SPIbelt work closely with the diabetic community providing specialty belts for children and adults with Type 1 Diabetes. Our belts are discreet and contain a pass-through hole that helps when carrying Insulin pumps or continuous glucose monitors.
To help with families that recently received a Type 1 diabetes diagnosis for their child; we have brought together two amazing women from the SPIbelt community to share their stories and some advice for the newly diagnosed.
Faith, mother to Gavin, a 9 year old who was diagnosed when he was 3 years old, is a prominent member in the T1D community and on the board of Camp Bluebonnet, a program that SPIbelt has sponsored for the past four years.
The second woman, Gretchen, is best known as the blogger to Type One Type Happy and is a 2017 SPIbelt Ambassador. She was diagnosed in 2014 and has become heavily involved offering Life Coaching to the T1D community. Through the #T1DSPI program, we hope to eliminate one step in the process by providing a FREE Diabetic SPIbelt to help carry pumps or other diabetic supplies, and helping to share similar experiences.
1. Keep the family involved, know you are not alone.
“There is so much to learn when first diagnosed with diabetes. Learning is best done one step at a time and keeping the whole family involved with the learning process. This will make sure there is a common understanding of the condition Type 1 Diabetes and everyone in the family will know how to treat and handle highs and lows for your child.” -Faith
“There are so many other people going through the exact same thing who completely understand everything you are experiencing. Getting involved with the community is such a powerful way to meet other Type 1 Diabetic friends who can relate and support you.” -Gretchen
2. It is confusing.
“We know at diagnosis everyone needs insulin to be administered into the body, but that is pretty much the only similarity between two people with Type 1 Diabetes. No two bodies are alike, therefore there is a lot of trial and error. It is okay to not fully understand diabetes. You CAN ask for assistance when you are not sure; no one will think bad of you. Ask and ask, then when you feel you’ve got it ask again just for good measure. ;)” -Faith
“This disease is a very confusing one, because no one knows what causes it, no one knows how to cure it and no one knows how certain things will affect your body. It can be extremely confusing and frustrating in the first couple of weeks having Type 1 because not everybody is the same so it really is a science experiment to figure out what works for you. Create a food journal including what you ate, what your blood glucose numbers are, and how much insulin you use for each meal. This will allow you to look back and know what your body does for certain meals.” -Gretchen
3. Tune in.
“Checking blood sugar levels by finger pricks is something we must do regularly, practically every other hour. This is not always an easy going action; same goes for insulin injections. As parents, we must stay patient, there is no exact science to diabetes. We will be constantly teaching our children how important these tasks are towards becoming responsible, healthy, type 1 diabetics. We are helping them “learn” how to recognize the relationship between their numbers and the way their body is feeling. In turn, building their sense of self awareness. I stay patient, only because children may not understand how to put into words how to describe what it truly is they are feeling. We only see the numbers. A great idea is to keep a log of descriptive words your child uses for highs and lows, and constantly add to this list. Staying in tune with one’s body is the key to keeping them safe and healthy. As parents, what more can we ask for?” -Faith
“Having Type 1 Diabetes myself, daily duties of pricking my finger and giving injections really heightened my sense of self-awareness. One of the things I have learned through my diagnoses is that I am more in tune with what my body needs, how it reacts with certain foods, how I feel when my numbers are high and low. All these feelings make you closer to your body and create this relationship that is very important to have in keeping you safe and healthy.” -Gretchen
4. Let yourself feel however you want to feel.
“As a Type 1 Mom, or any of us parents we always like to show our families we have everything under control. “I got this!” sort of attitude. Well, you will have feelings that do NOT follow this protocol. Your child will be having mixed emotions as well. Let these waves happen, it is part of finding our true strength within. Anger, frustration, sadness, loneliness, and yes, even denial. Keep as positive as possible, and walk your loved one through these emotions. Only the strongest little soldiers can take diabetes head on, and say “I got this!” Positive vibes help.” -Faith
“Give yourself permission to feel whatever feelings come to you during this extreme change in your life. It is just a part of the acceptance process. As long as you give yourself that time and then move on from that feeling into positivity and productivity. It helps to talk about it with family, or peers, or journal about it and express yourself to help let go of those feelings.” -Gretchen
5. “What doesn’t kill you makes you stronger.”
“In our house we say Gavin’s our super hero! Iron Man gets his energy off his chest piece, Gavin’s super power comes from his insulin! Work the situation from any angle available. I can honestly say though, I believe him being diagnosed diabetic has opened up a little pot of golden confidence that shows his strength to master diabetes. Nothing will stop him.” -Faith
“This quote literally speaks the exact truth that I have found through my diagnosis. Type 1 unexpectedly makes you a hundred times stronger than you would ever think you could be. It tests you and pushes you, but it makes you see the true strong person that you are meant to be.” -Gretchen
6. Power not shame.
“We have all heard the phrase ‘Children say the darnedest things’, and sometimes we are thinking this as we hang our parental heads in our hands after a impromptu public comment. Gavin is extremely comfortable with his diabetes. If someone is staring too long or too hard, he has the power to say, ‘Do you have a question? It’s for my diabetes’ and I smile politely at his courage to take on the uneducated, and then hang my head in my hands laughing oh so quietly. His way to work through diabetes is self confidence. – Faith
“Just because you have something that other people don’t have to deal with does not make you less than any other person. You can do anything and everything that other people can.” -Gretchen
7. Get thoughts from many potential endocrinologists.
“It is so important to find an endocrinologist doctor that works for you and supports you. Building a strong medical support team that you can trust is crucial. After I was diagnosed with Type 1 Diabetes, I saw three different endocrinologists before settling on one that I love that can support me and my needs. I would ask them questions to see if their thoughts and my goals would line up.” -Gretchen
8. The Math.
“Having diabetes means counting the carbohydrates you will be ingesting. Counting carbs means basically just that. We become very well versed in reading, memorizing labels of our favorite foods. This is tedious at first, although extremely beneficial. Keeping up with your intake helps you become more in tune with how your body (or child’s body) works and feels with that particular food. You will get the math sooner than you think! I have never been good at Math, but yes, counting out each individual goldfish is worth it and will become easier with time.” -Faith
“When Gavin was diagnosed, he was a normal energetic 3 year old. To give him his insulin corrections while he was running around playing what in his words ‘not appropriate’ for his day. So as soon as the insulin pump was an option, he jumped at it and has not yet (5 years later) looked back. Experiment on which insulin delivery system works best with your diabetics lifestyle.” -Faith
“Everyone is different. So one kind of meter may work for one person, but not for another. Experiment researching or trying different meters, pumps, pens vs syringes, low supplies, etc. to figure out what works the best for you. When you use supplies that work for you and your lifestyle, managing your diabetes becomes a little easier.” -Gretchen
10. Always stay prepared.
“Gavin carries a pump in his SPIbelt but I also have a big purse I carry on the daily. Within this purse, the only 3 items that are mine are my wallet, a chapstick, and motrin haha! This bag holds EVERYTHING I could possibly need should Gavin go low. Glucose tablets, juice, granola, candy, extra insulin, meter, small water, glucogon, and anything else you could think of. You can never be overly prepared when you are out and about.” -Faith
“Whether you are with a group of people or alone, remember to always carry your supplies for any high or low situation. When you stay prepared, you can feel more confident and avoid any dangerous situations.” -Gretchen
SPIbelt is committed to supporting families who have recently received a Type 1 diagnosis or who are still looking for a pump/cgm carrying solution through our #T1DSPI program. We understand it can be an overwhelming time and we hope to eliminate one step in the process by providing a free Diabetic SPIbelt for carrying your little one’s pump or other diabetic supplies. Our SPIbelts can be comfortably and discreetly worn so that diabetics can have their continuous glucose monitors, insulin pumps, syringes, fast-acting emergency glucose, and insulin vials and pens ready at all times.
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