I can’t believe this is happening to me. It’s starting to sink in a little. I feel tired and robotic–like I’m just going through the motions and that it will always be like that or at least for many years. It’s true that this daily care task will continue for a long time, but will I be able to find time for myself? Is that a selfish question?
It’s okay for me to feel this way; I’m allowed to feel a little bad because something crappy happened to my family. But that validation doesn’t make me feel much better. And I have to experience it; I can’t continually deny what we lost and what we gained. I’ve repeatedly said that this is like having a new, totally unexpected baby but with lots of needles. Every time I feed her I have to cause her minor pain before and after. She doesn’t cry but always says, “ow, that hurt!” It sucks. I know I’m complaining a lot, but it is truly rotten. No kid should have to do this (or face any other serious medical condition). It isn’t fair.
What I have to be careful of is falling down the rabbit hole of the injustice of juvenile type 1 diabetes. I can’t focus on the pain, the restrictions, the responsibility, the complications, the hypothetical crises, the cost. I have to focus on the present task. Keeping Ada healthy. If my problems processing her diagnosis and new normal get in the way of caring for her, then I will have failed myself. I choose to take the role of primary caretaker–I want to give the shots, prick her finger, chart her food, search for patterns. I want to stay on top and ahead of this monster.
With my own depression, I described the oncoming episode as a giant wave. I used medication and skills to stay ahead of it, and I guess I’m trying to do the same thing here. If I can control her diet and exercise and give her her medications, then maybe we can avoid complications. Of course, it isn’t a magic formula and there are no guarantees. We just have to do our best. Just like I did with my escape from the looming wave of my 6th depressive episode. It didn’t hit me. I worked hard and avoided drowning. I made major strides in my personal thinking (I’m still adamantly refusing suicidal thinking!), and I came out stronger than I went in. This could be the same although I expect bumps along the way. I’ll keep fighting; I hope all of you are still bravely fighting your battles. Hard work, expert help, positive thinking, and faith can get you through. ❤️
Almost had a major flub last night. I didn’t have any syringes for Ada’s bedtime medication, and the pharmacy was only open 30 minutes more once I noticed. It hit me like a ton of bricks, and I ran downstairs and told my husband one of us had to go to the pharmacy immediately. I was so worried that we wouldn’t make it in time. But my husband made it with barely minutes to spare.
I am still adjusting to the fullness of this. There is so much to remember, so much to learn. I feel foolish for forgetting that we had run out of syringes. I thought we would be fine until tomorrow because we have an alternative way to inject her daytime medicine, but I forgot I need syringes for bedtime. I feel like I almost messed up big time. There is just so much to consider. Before, I just had to force myself to take 2 pills at bedtime; now, it never ends. I am doing something health related every 3 hours unless we’re asleep. Add on all the time I spend in the car driving back and forth from home to the school (3-4 times daily), and I hardly have time to do anything other than take care of Ada’s health needs and rest enough to keep my own health in check. I know this won’t be forever. The school nurse will eventually take some of the work over during the day, and then Ada will be doing some of it on her own later.
I need to get a load of dishes done today, but chose to have a cup of tea with a friend instead. I felt like I hadn’t talked to anyone in ages. My husband and I spend so much time talking about our daughter, and I often crash between dinner and bedtime snack ruling out evening time. I’m just trying to keep from going crazy without the (large) amount of rest I need to function. We haven’t had even an at-home date night since diagnosis. We used to have them twice a week. I know it’s only been 2.5 weeks, but that is 5 dates we’ve missed in a row. I would up my coffee intake, but it makes my hands too shaky for Ada’s injections. We’ve got to figure something out; I’ve got to get more energy somehow so that I can do housework and make time for my husband.
Tea with my friend was great, though, even if it was only 30 minutes because that’s all the time I had. We just talked about stuff for a bit and I felt far more sane just being with someone else. I texted her on short notice and she told me to come on over. I am so blessed to have a friend near by who can make time for me whenever. Now I just need to figure out how to get date night and Wednesday night bible study back into my routine. I miss people!
So, although I almost messed up big time last night, I have taken my husband’s advice to be gentle with myself. The house will get done; I can do a load of dishes when I get home. Date night will come back when we figure out our new time schedule. I will get back to my friends when I figure out how to travel with Ada, a meal, and supplies. It won’t be like this forever, but even if it was, I would still do it. My kid is worth it.
(Artwork provided by Ada Liner, 1/27/2016 before school)
I have been learning so much over the last 2 weeks. About type 1 diabetes. About food. About my daughter. About my family and friends. And about myself. I have already talked about how I feel strong and determined, but I have begun to feel more. I see that I have craved as much control over Ada as possible since her diagnosis. She has had a hard time returning to school since all of this began. We were told that it isn’t uncommon for kids to behaviorally regress a bit after diagnosis, and we are seeing it in her resistance to return to school, and I am seeing my control issues in my willingness to let her stay home. We are enabling each other. So today was difficult because I took her back to school to really start again. No more playing hooky; we both have to pull ourselves together, reach deep, and get it done.
I had a hard time last night because I realized that I had to send her back to school. I couldn’t keep her home; I had to let go of being within earshot of her 24/7. She has to be independent from me, and if she is struggling then I need to encourage rather than enable her. I was more upset about letting go of my “control” over Ada’s diabetes than I have been about most anything except the initial diagnosis. I was angry and sad. But I realized that I was angry because I was having to admit that I was wrong. She needs to return to school, and my plans to ease her in more slowly were not what she needed according to her doctor and other family members. I’m still at the school 3-4 times a day to give her her glucose checks and insulin. I’m there almost as much as not! That is bound to be enough of an easy transition for her given that before diagnosis she was great at school. I just had to let go. And I did. And I feel okay. She’s been gone for 3 hours; I’ve already been up there to give her her lunch routine, and, although she was a little sad when I left, she didn’t cry. She did pout a little though, but I handled it, and I left her in the hands of a caring friend.
I’m going to be okay. Ada is going to be okay. I’ve got friends and family around me; I’ve got my counselor and doctors. And I’ve got faith that this is all part of God’s plan for my life–and Ada’s. I have picked a bible verse to return to throughout 2016 that I thought I’d share: Isaiah 43:18-19 “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” I am choosing to believe that, although it seems like we have lost something wonderful (a completely healthy childhood) and gained something terrible (type 1 diabetes), there are greater things in store for my family as a result of this diagnosis. I pray that it brings us closer as a unit, gives us greater strength individually, and empowers others to fight. God is doing something new in my life, and despite the chaos I seem to have found myself in, I choose to believe that He will make our survival possible and even joyful. Stay strong, friends, and keep fighting your own battles.
I haven’t cried much in the last few weeks. I think it’s the mama bear in me–I feel fierce. People are being so thoughtful and sending me emails, messages, and blog posts, and one thing seems common–people are devastated by this diagnosis. There is currently no cure. But my devastation has been secondary to my action.
Before Ada’s pediatrician told me she had type 1, I thought there was maybe a 5% chance that was it; so when he told me I wasn’t completely surprised, although I had been hoping for something much less severe. I politely thanked him, asked for directions to the ER, and kept on a happy face for Miss Ada. I kept that face for about 12 hours before my husband and I were alone, then I cried for about 5 minutes. But I pulled myself back together to quickly get back to Ada. I had a couple more moments over the following days where I stepped into the bathroom and had to pull it together, but that’s it. No weeping, no mourning, just action. I’ve turned into my mother–the most powerful force in my life. I always saw her as a fortress of strength and stability. Now it is my turn, and I’m doing it. I am doing what needs to be done without letting my fear get in the way. I am being a protective mama bear ready to strike anyone and anything that comes toward my cub.
I feel purposeful; I feel a new wind driving me to work harder and do better. I feel strong; I feel far more capable than I did a few weeks ago although I have seemingly lost control over Ada’s body. I feel blessed; I feel that God has set up my life to emotionally, physically, and materially prepare me for this moment. I may lose it at anytime, but I may not. I may stay strong, but even if I begin to grieve the loss of my daughter’s health, I will still be strong. Strength comes in many forms and in this case it is about strong endurance rather than a quick burst of strength. Every day is training for the next. We will keep going, never giving up. Never giving in.
Ada threw up last night. I had almost forgotten–I was so tired when it happened–but her numbers were low this morning and I remembered. She hardly ever throws up, and it is usually from high fat foods, but last night she had a pretty healthy dinner. And I have to be more cautious now to avoid ketones or dehydration.
This has been a lot to take in, and I am realizing how much more I am craving to be in control of Ada’s life. I want to be with her all the time to notice any change in her body or behavior. I know when and what she eats, when she goes to the bathroom, when she rests, when she’s active. I want to know all these things to better understand her. I want to be her life-line.
But I can’t have complete control. I’m also trying to teach her how to be a citizen in the world, and that means letting her experience things away from me. It’s just hard because no one could possibly care about her wellbeing more than I do. She is so precious to me.
I am pretty good in crises outside my own head, and as long as I can ignore my own demons, I tend to get super focused on doing what needs to be done. But my brain is also now telling me I need that control over Ada’s life. That, if I don’t have it, something bad will happen. This sounds bad, but it is actually the first real negative emotion I have even tried to process since the diagnosis. I have used my mindfulness skills to push away thoughts that I didn’t want to think, but I’ve been in a sort of denial. I strive to live in the present, and have only focused on the now, but I must also plan for the future, and I can’t help but think of the recent past when none of this existed for us. I have to accept my situation rather than just acting on it.
I asked God to help me be more intentional in my life this year, and, man, has he given me a serious opportunity to be incredibly intentional. Everything I do with and for Ada is an intentional choice regarding her health. But I am ready for the challenge. I am encouraged by my abilities thus far; I am trying to be more intentional about processing my feelings. I am stronger than I realized.
Well, my life just changed more dramatically than I expected: my 6 year old daughter was diagnosed with Type 1 Diabetes on Tuesday. I’m sort of at a loss as to what to say. I have stayed pretty positive, refusing to indulge the negative thoughts that have entered my brain over the last few days. But I know that I may not be able to permanently keep this wall of strength from being flooded by the wave of emotions that I have been fighting. My daughter has a life-long auto-immune disease. For now, she has to have 6 injections a day along with 6 finger pricks. My baby! She has to deal with a dozen needle pricks every day! It is tough to do that to my kid, but when it hurts her and I apologize, she always says, “It’s ok, mom”. She is amazing, brave, strong, and many other wonderful things.
I have no idea what this change in my life will mean for the blog, but I will at least attempt to keep writing. My life will be a rollercoaster of emotion over the next few weeks, and it will be interesting to see how I do holding off my depressive habits. But I have a great support system in place. I know my daughter NEEDS me more than ever, and I still have hope for my future and hers. Stay strong even in the face of difficulty. Peace, love, and health to all of you.