It’s been just over two months since Love Bug, and the rest of us simultaneously, was diagnosed with type 1 diabetes. I shared the story of the diagnosis in the first post and then answered frequently asked questions and gave a glimpse of our day in the second. For this post, I’ve written about things I’ve learned and how I’ve changed. After this, I’ll get back to the makings and bakings and cookings.
In terms of handling the type 1 diabetes diagnosis initially, I tried my hardest to keep myself together. I held it together fairly well when the doctor confirmed the diagnosis. Standing in the exam room, I got tears in my eyes but quickly blinked them away because there was no time for anything else. I had three children to care for, I didn’t have time to fall apart. I held it together as I packed food and clothes and drove in end-of-the-day traffic to the hospital. I held it together while Love Bug was examined and tested again in the ER. I held it together when MJ, and then later my mom, arrived. I held it together as I shuffled the boys, my mom and myself to our car to go home for the night while MJ and Bug stayed. As my mom directed the car towards home, I let go. I wept and my body started shaking. The adrenaline I’d been running on had ceased. I finally allowed myself to feel everything.
It felt like a death. Our way of life, the way we were living, ended that day in August. We will never go back to what life was like before. The easy, uncomplicated, basically straightforward existence we had was no more. It died. While I was thankful to know the reason behind the symptoms, thankful for good medical care and so unbelievable thankful I could still see, hold and talk to my Love Bug, I was also filled with loss. Loss of the life we had and would have had, loss of the life Bug would have. I didn’t want this for Bug. I didn’t want this for my family, for me. The sorrow I felt and still feel today is heavy and deep.
As we drove home the first night, I explained to my mom the kind of life I had envisioned for us, now that it was completely changed. I told her how I wanted one of those lives where we experienced all those common, universal things most humans encounter as they inhabit the earth. A life where we exist, endure the basic highs and lows, the trials, the loss, the joys, the sorrow, and then die. Nothing especially spectacular or radical, I mean, to the outside world. A life we made, full of our family and friends, love, laughter and memories. She turned to me and asked, “So you wanted a life where you didn’t get dirty?” I thought for a moment, shameful of my weakness, and responded, “Not this kind of dirt.” In the dark, I knew what I didn’t want. Unfortunately, some things aren’t a choice.
Some things became less clear
As I sat in my brain dead, zombie-like state for the three weeks following, I reflected a lot on what was important and what was not. To be quick, very few things fell into the important column. Beyond family and friends, the relationships we cultivated, and having the things necessary to keep us alive, I really wondered what the purpose was for the rest. We bought a house the same week and it took me four weeks to crack a smile about it. For the purposes of this post, I really questioned the purpose of making and creating, of styling, photographing, editing, curating, social sharing, of blogging. What’s the point of it all? I felt like an imitator, a fake, a stand in for someone who didn’t have a care in the world. I don’t know how to rectify it all, the business, brand, glossy cover part of this job with the real, raw, unedited life we all live. How do I maintain authenticity while being lighthearted? If I’m completely honest, I don’t have the answer yet.
Some things became very clear.
Life is short, unpredictable, terrifying and beautiful. It is a gift and we need to be thankful. Every day, all the time.
So much time is wasted on ridiculous things like anger and grudges. Cut out the unnecessary, let go of the useless.
Worrying, while justified, detracts from living so don’t waste your time on it. Be in the moment, not ahead or behind.
There are very few important things. For me, I’m partial to people and relationships but we all get to choose for ourselves.
We all have burdens and sorrow. Loss of a loved one, loss of a job, terminal illness, abuse, addiction, unfulfilled needs and dreams. The list goes on. There is no comparing, no ranking, just understanding
Give grace and give love. All the time.
Complaining is the worst. Whining is aggravating. Focus on what is good.
I know being alive needs more than just the basics. Living is not just surviving. We need the lighthearted, the silliness and laughter. Lots of laughter. And we need each other. We need each other to make it through.
As I said in the first post, this has changed me. I see myself as an aging piece of leather: I’m softer, more flexible yet strong and beautiful (we’re talking inner beauty here). I am more kind (especially in thought), more compassionate, more sensitive and so much more grateful. Where I once may have held on to annoyances and personal stings, I find it easier to brush them aside and give grace. Where I once saw unhappy people, I see the troubled souls and I wonder what burdens they are bearing. Life is a little more raw now, less shiny and glossy.
I’m not a saint, however. My sarcasm is still alive and well. I have lousy days. I still have times when I curse the hardships, including and especially diabetes. I’m still frustrated with how t1d disrupts my life and the life of my family. But I can more easily find the good in it all. And there is so much of it.
I find I have some much more to say. The thoughts aren’t complete yet and they aren’t all about diabetes. They are about life and how I’m choosing to live it. I don’t think I’ve ever shared this much about my/our personal life before. It’s freeing and frightening at the same time. I think there might be a few more personal posts sprinkled in going forward. How it will all look? I don’t know.
So beautiful, real and honest Amy. Thank you for sharing your pain and joy, I shed a tear for you in the middle and relate to so much of what you had to say about questioning ‘why’ we blog etc and being a “stand in for someone who didn’t have a care in the world”
Mom to mom hugs are yours xxx
Thank you, Michelle. I bet you know all those ‘why?’ questions too. Thinking of you too. Hugs.
I’ve been reading these posts Amy – no, devouring them. Wanting to know how you’re doing, how she’s doing, wondering how I’d deal with it. In the end I just want to say this, she is the luckiest girl to have a momma bear like you keeping her healthy and safe.
I had no idea diabetes was yet another auto-immune dusease. Makes me wonder lots of things about that category (an area of illness I’m far too familiar with) I remember mourning my own loss of normalcy when I first got sick at 25. I wish I could say the loss gets easier. But I have a feeling for her there will be less mourning – because as she grows up she will never know another way like we did.
Sending you strength!
Thanks Mari. The autoimmune realm is so confusing and unpredictable and so filled with so many unknowns. I know you know the trials. Thanks for your kind words.
These posts are such a gift! And the timing so perfect. My niece age 12 was just diagnosised two weeks ago with Type 1 diabetes even sent to the same hospital.
My heart has been aching for her and my sister, her mom. Your post is incredibly helpful and insightful – I am having my mom read it as well. THANK YOU for Sharing. Your blog is so beautiful – i love visiting. Prayers to you!!!
I’m so sorry about your niece’s diagnosis. It is a hard road and a burden but let’s not let it dim the light, alright? :) Life is good. If you ever have any questions, I can try to offer any information. Thank you for your kind words. Prayers to you as well.
Thank you for sharing all of this, Amy. It must be so exhausting for you and your husband. I imagine that your daughter is taking it very well though, thanks to the way you’re handling it. One day at a time. :)
Thank you, Jenny. One day at a time is it. The only way to go. :)
My friend shared this blog with me today. I’m 6 weeks behind you to the day. My daughter was just diagnosed on September 16th. I too have three kids, but my daughter that was diagnosed is the youngest in our family. Even though I know we are not alone in this struggle it’s nice to be reminded that people are going through this same struggle everyday just like me. I tell people how I’m grieving still. It’s like you said, it feels like a death. A death of our old life, a death of what I envisioned for my daughter, a death of our freedom in a way. Thanks for your words and sharing your journey with us. Stay strong Momma. We got this!
I am so sorry, Jennie, for you and your daughter. Sounds like you are a warrior momma too. :) We are in this together, carrying this burden. If you have questions or thoughts you’d like to share, send me a note. You are not alone. We do got this.
My little family has been going through a devastating time which is why I wasn’t able to catch up with your blog until this evening. I am so sorry about your daughter’s diagnosis. Just wanted to send good thoughts and lots of prayers your way. Blessings to you all! ~rose
Amy,
Your mother pulled me aside shortly after your daughter was diagnosed. I felt horrible for you, your daughter, and your family. I can understand many of feelings you describe having when I was diagnosed with type 1 diabetes 13-years ago.
I promise this is manageable and easy to live with especially once she really has a little more time to get her routine down for controlling it. I use an insulin pump and occasionally use continuous glucose monitoring as well. The pump gives me the best control over the diabetes by far. If she gets the chance to get one I would at least look into it if I were you.
For what it’s worth, ever since I heard about your daughter’s diagnosis, I’ve been praying for her and your entire family. I promise you that life will get easier and this will be more second nature than overwhelming like it seems at first. I will continue praying for you all. God bless!
Your message brought tears to my eyes, Corey. Thank you for your kind words, sharing your story and for your prayers. It’s so comforting to hear from people living with the disease. Living with it and living well. Thank you. Thank you. Thank you. God bless you too.
Amy, I am so sorry about this. I have had type 1 diabetes since I was 15 years old. I am now 34. I have kept very tight control using a Medtronic mini med insulin pump for the last 15 years. I recently was able to get a cgm thanks to changes in my insurance. I have zero complications. When I go to the eye doctor they say they wouldn’t be able to tell that I am diabetic if I didn’t tell them. I have had two healthy pregnancies and have to very healthy children that do not have diabetes as if yet. It is a hard disease. But keep up the good work. My mom took me to several specialists and we attended many classes growing up to make sure I stayed in top of it! I just wanted to say that, yes it sucks, but it it is still possible to live a good life!
Thank you so much for your message, Andrea. I am so thankful to hear that if it is well monitored, a good, long and healthy life is possible, almost inevitable. We are checking into getting the CGM at our next appointment and MJ and I are headed in to learn about the pump in January. As I’ve said in other comment relies, it’s great to hear from people who actually live with the disease. Thank you for sharing your story with me. You (and your mom) sound like strong, determined women. I like that.
I’m so sorry. I get it. There’s a turmoil of feelings associated with T1D. I was diagnosed 5 years ago, as an adult, and was traumatized. I shared those same symptoms with your daughter. I would eat, and then almost immediately after, would sleep. In the few months before I put the pieces together and saw a doctor, I was so incredibly thirsty. All I wanted was orange juice and milk. I shudder now to think about what that was doing to my blood sugar!
When I first found out, I was scared and angry. I was so angry at my body for failing me and scared of dying or living as “a sick person.” I was scared the diagnosis would mean never being able to have kids, and I could only picture Julia Roberts in Steel Magnolias shouting, “Don’t talk about me like I’m not here!”
Soon enough, counting carbs and taking shots becomes the new normal. Some days are more frustrating than others, but I have figured some things out and you all will too. I agree with everyone who has suggested a pump and CGM. (I use the Omnipod and the Dexcom Platinum.) They’ve been so helpful for me, and have made me feel so much more free. Also, thanks to all the technology and some fantastic doctors, I was able to have 2 successful full-term pregnancies and now have two rambunctious little boys to show for it. She will be just fine. And you all will too. Lots of love.
Oh my goodness, Sarah. My first thoughts, when the doctor said diabetes was Steel Magnolias as well! I saw her laying on the steps, unresponsive, as her son stood alone crying. Talk about distressing. The doctors (and the educators and the endocrinologist) assured me that medicine has come a long way since then and I am so thankful. We have an appointment in 10 days and the CGM is on our list and we are starting the pump education in January.
I so appreciate your note. I am trusting we will settle into this new normal. I am so glad to know about your two successful and healthy pregnancies. The doctors have assured me as such but it’s nice to hear it from actual people, especially women, living with it.
I am so thankful you are healthy and so well adjusted. I am so grateful for your message. Thank you.