As 2010 draws near an end, I’ve been reflecting quite a bit on how far we’ve come…and how far it feels we still have to go. Since launching the new Candy Hearts in August 2010, I’ve been blessed to connect so many new and amazing people.
I wanted to share this post with you.
I wrote it in July 2010 as I was dealing with the emotions of surpassing the 5 year anniversary of Sugar’s diabetes diagnosis.
I hope you will be able to identify with it — perhaps even allow yourself to acknowledge the stairway you’ve been climbing.
I often slip back, stumble down, and fall backwards…but, in those dark moments, I have come to find the incredible blessings in the Diabetes Online Community (DOC). Dearest readers and fellow bloggers, my Facebook friends and Twitter pals who put up with my Tweeting Learning Curve, other mothers and fathers who walk their halls at night, praying for a number that clears the pathway for sleep… please know that YOU lift me up.
I wouldn’t have been able to make it to the platform I’m standing on if not for each of you.
This one is from deep inside my Candy Heart.
Originally posted 7/6/10
The line was silent.
At other end, I heard a sniffle. Sensing that something was wrong, I cautiously proceeded to ask my question again: “Ma’am, does your child have any history of medical problems?”
And then a stutter.
“Up until last week, I would have told you no. But now I have to tell you that she has Type 1 Diabetes.”
She affected me. There was something in her silence. Something in the way she swallowed hard and fought back tears while trying to let the words roll off her tongue.
“She has Type 1 Diabetes.”
At that moment, I wanted to wrap my arms around her, and tell her that I know how hard it was for her to speak that difficult truth about her precious child.
It really got me thinking. July 25, 2010 marks the 5th anniversary of Sugar’s diabetes diagnosis.
Five years…yet…it seems like, just yesterday, I was stuttering over my own words and trying not to cry whenever someone asked about her.
Lately I’ve come to realize that I’m reaching a new level when it comes to our life with diabetes. Looking back, it seems like this road has been a series of steps. As if I’ve been climbing a huge set of stairs — sometimes stumbling backwards, but constantly trying to move forward.
1) DENIAL. I distinctly remember standing at the kitchen sink with my mom and telling her that Sugar seemed to be drinking alot of water. I remember my mom asking if I should have her tested for diabetes….to which, I sharply responded that there was NO WAY my baby could have diabetes. A few weeks later, I remember being at a friend’s house and asking if her daughter’s diapers leaked the way Sugar’s did. My stomach turned when she told me no.
During this time, I knew what was happening in my heart, but it was too hard to face. It was easier to deny the obvious and make up excuses. She seemed so happy and normal most of the time, and her symptoms were very intermittent. The week prior to her diagnosis, we were on vacation, and her symptoms worsened dramatically. I knew at that point that I wasn’t going to be able to ignore the truth much longer.
2) SHOCK. This lasted for about a week after we came home from the hospital. I felt numb. My brain was fuzzy. I struggled with poking my child with needles multiple times a day. I cringed every time she needed a sugar check, because the “click” sound of the lancet device scared me. I couldn’t figure out how one day turned into the next.
During this time, it felt like time in my world had stopped, but the rest of the world kept on moving.
3) ROBOT. Shock quickly faded into the robotic acceptance that this was our new reality. No matter how crazy it seemed, I was convinced that we could live on adrenaline forever. We could stick to the rigorous routine, limited carbohydrate allotments, and lack of flexibility forever. Period. This is the way it was. We were in crisis mode and would stay that way. It was during this time that Sugar’s horrible lows started. I became an automatic person on auto pilot, constantly on guard for the next time she would pass out. Our life became absolutely crazy with a brand new baby and a cross-country move that forced us to leave everything behind in order to maintain access to health insurance. Everything seemed to be happening at once. But I was a robot….no matter what got thrown in my lap, I would still check her sugars and feed her the same amounts, at the same time, every. single. day FOREVER! The crazier life became, the more robotic I became. I. think. I might. have. even. started. talking. like. a. robot.
This lasted for about a year and a half. During this time, I began to feel like I was morphing into a complete stranger. I couldn’t trust my feelings, because I wasn’t sure how I felt about anything…or if I was feeling anything, for that matter. I constantly questioned my judgment – whether it be for a decision at work, how much insulin she needed, or what I was going to make for dinner. I was constantly apologizing for everything. I felt like an inadequate mother because my brain wasn’t able to connect with emotion. I was sure that a robot could do a better job than I was doing. I was also sure that every other mother who ever existed was a better mother than I could ever be.
I, after all, had allowed my child to come within hours of her death before shaking myself into reality and seeking help. A robot would never have done that. When something was wrong, a robot would have alarmed. My children needed a robot for a mother. Not me. Whoever that was, anyway.
4) GRIEF ALONE. After leaving Maryland, we lived in an apartment in Arizona for awhile. It was very easy to be a robot in an apartment, because I knew we weren’t staying forever. I was just going through the motions, but, once we moved into our new house, I began to realize that being a robot was robbing precious moments that I could never capture again. Even still, I had a hard time attaching to my new home. It took 2 years before I hung anything on the walls, and, even now, there aren’t many family pictures around. I missed Maryland. I missed the trees. I missed the seasons. I missed my family – especially my mom. I missed all the old familiar faces. Basically, I missed our life before diabetes.
During this time, I cried. Alot.
5) GRIEF and ANGER. After a few good cries, it didn’t take long for anger to set in. And, let me tell you, it set in with a vengeance. I was mad at the world. We were preparing for Sugar’s transition from shots to the pump, and I was distinctly angry that I had to make such a ridiculous decision to keep my child alive. The pump transition was difficult, and I was mad about that. Sugar spilled syrup one day, and I was a lunatic. If the house wasn’t spotless all. of. the. time, I was convinced that it was because I was a failure…and it made me mad that my husband had a failure for a wife and my children a failure for a mother. I was mad that it took so much work to prepare Sugar for preschool. I was mad that the school made things so freaking difficult in the beginning. I was mad, mad, mad. I was mad that I couldn’t whimsically drop her off for her class at church or line up a babysitter for a date night. I was especially mad when I was working and listened over and over to a mother whine about her kids’s snotty nose. A SNOTTY FREAKING NOSE? REALLY????? I oscillated between complete despair and complete madness. It was hard to find a middle ground and feel positive. By this time, Sugar’s numbers consumed me, and I was mad about that too.
During this time, I pushed anyone and everyone away from me. I felt ashamed for the thoughts in my mind and the occasional slip of my tongue. Very few people that I encountered during those days were able to recognize that I was a mother with a broken heart, and extend grace and mercy. Most of them stood in judgment — as if they had any idea how they would respond to the nightmare I was trying to make normal. Oh, but the ones who hung in there…God bless the ones who hung in there and helped to lift me of the pit of anger that consumed me!!! This seemed to go on for about 2 – 2 1/2 years.
6) CONNECTED. I began to seek out connections with other families in our area. By the grace of God, I actually connected with several mothers who had been coping with their child’s diagnosis for about the same amount of time as I had been coping with Sugar’s. I listened to them. I heard their sadness. I heard their anger. I heard their voices tremble when they tried to recount their child’s diagnosis day. About a year after connecting with these families, I realized I wasn’t angry every minute anymore. Suddenly I was able to randomly smile again. The pit in my stomach seemed to be getting smaller.
During this time, I started my blog. And then there were more connections – more mothers – more reminders that I wasn’t alone. That I was okay. Sugar was okay. Our family was okay. We were all okay. And we were going to continue to be okay.
7) ACCEPTANCE. In the past two years, I’ve come to accept that this IS our life. I realize that might sound silly, because we’ve been doing it for 5 years, but it’s true. In the beginning of my blogging days, I journaled all the time. Sometimes more than once a day. There was just so much inside. So many things that I needed to spill out, and – OMGsh – there were people actually willing to listen. I’ve learned to prioritize. I’ve learned to let go of relationships that create more chaos. I’ve been able to recognize special moments with my girls, and cherish them. I’ve made friends outside of diabetes too! Many neighbors, school moms, and folks at church. I’ve matured spiritually. My house no longer needs to be perfect in order for me to find self worth. Forgiveness comes easily…even for wounds that are layers of years deep. I’m able to move on instead of dwelling in negativity.
During this time, both Sugar and I were diagnosed with celiac. I’m not exactly sure how things would have played out over here if not for the supportive network I’ve been blessed to surround myself with. It feels natural to reach out to people who are hurting, regardless of whether their pain involves diabetes or not. I’m able to be irritated without losing my mind. I’m not beating myself up all the time for things I cannot control.
It’s been very healing.
Sometimes I wonder what the next step is. I wonder if I’ve reached it yet, but just can’t identify it — or if I’m gripping it and trying to pull myself up.
Whatever it is, I’m so glad I have YOU to share the journey.