Today, we are at the 5-year mark of our daughter Emma’s diagnosis of type 1 diabetes. So much has changed since that day. Sometimes it seems that day was a lifetime ago. Sometimes it still feels painfully fresh in my mind. I’d like to say it has gotten easier with time, that we’ve figured it all out and that diabetes is but a small speed bump in our day to day lives. But that isn’t the reality of our lives. The road hasn’t gotten easier but God also hasn’t deserted us. In his way, He is using this horrible disease to draw me closer to himself and to rescue me from myself.
Last year Emma made the decision that she was ready for a CGM (continuous glucose monitor) and an insulin pump. We always wanted it to be her decision. Personally, I was glad because her current therapy was beginning to wear on her and frankly, it wasn’t working anymore. These two devices have been such a tremendous blessing for Emma. No longer are her days filled with shots and her overall health is better. Her A1c dropped two points and for the first time, she was under the target for her age range. We can give her more freedom and make better-informed decisions for her treatment. We were and still are so very thankful for both devices.
However, things aren’t perfect. With tighter control comes more dangerously low blood sugars. We often treat lows multiple times per week. Most of these lows are at night. There is also the work of always changing a pod or putting on a sensor. Puberty and the natural process of growing require more insulin. With the benefits have come all new challenges.
Emma was 6 years old at diagnosis. She was too young to really understand everything that was happening to her and what it would all mean for her life. Over the last year, she has begun to truly process her condition. She is tired and weary of the constant and unrelenting nature of her disease. She is weighed down by the reality of a lifetime of diabetes. She is aware of her mortality and each night is a struggle for her to go to sleep without fear. The pump site changes and the sensor changes have become more painful. The finger pricks are hurting more and more. She is tired of being strong and she is often angry. Dale and I have been watching this unfold with broken hearts. Recently, after a tear-filled sensor change, both of us realized that we had slipped back into a depression, having to watch Emma suffer and struggle so much.
The next night, after making sure that she was checking/calibrating before bed, tired and weary I fell asleep. Sometime around 2 am I unexpectedly awoke from a deep sleep. I looked over at my phone and realized her cgm had not been transmitting for hours and I hadn’t heard the alarms. I reluctantly got out of bed to go and fix the problem. For some unknown reason, her cgm was reporting a signal loss even though it was beside her. For the next twenty minutes, I did several things trying to solve the problem so I could go back to bed. Finally, her phone started reading her BG. It said 101 and going down. I debated whether to give her a snack or wait it out to see if she started to rise like normal. Before I could decide, her CGM said 111 and steady. I was satisfied with that number. However, I just didn’t feel released to go back to sleep until I checked her with the meter. The meter said 72. 72 is a low BG but not crazy low. I gave her a snack and waited for her BG to go back up. Instead, it went further down into the 50’s. Finally, after rechecking and suspending her pump, she was back into the 80’s and going up. I realized what had just happened. God had intervened to save Emma’s life. I wasn’t supposed to wake up. The CGM makes so many noises all the time and it is easy to become accustomed to them. The CGM didn’t see the low BG. Technology had failed us but God had not.
One of the hardest things about being a parent of a child with diabetes is watching your child dying numerous times a week. Their BG is dropping and they are dying while you try desperately to do what you can to save their life. Over and over again. I know that sounds harsh. And for so long I downplayed the seriousness of our situation, of her disease to be able to manage our life each day. I had to make it seem like something I could handle. But God is trying to rescue me. I’m not meant to handle this disease on my own. This burden is too much for me to try and handle without his grace each day. The depression came about because I was slowly realizing that no matter what gadgets and treatments I get for Emma, I can’t fix it for her. I want so desperately to make it somehow better for her. I want to protect her heart from the hurt and suffering that she is feeling. My heart breaks every time I hurt her in order to treat her.
After that night, I realized that the only hope for Emma is the gospel. The Gospel is the only place where she is going to find grace and compassion. The Gospel is the only place where she can find healing and an answer to her suffering. Only the Gospel can redeem this disease for her and provide a purpose for her life. Only through the Gospel will she ultimately be cured of this disease through eternal life in Jesus.
I had unknowingly fallen into a trap. I had begun to put my faith into something else to save Emma. I had placed my faith in technology and in myself to save her life and her heart. Emma ultimately belongs to God. And he loves her more than I do. He has plans for her life. He desires his own relationship with her that will be hard fought and deepened by her suffering and his provision for her. In my Mom heart I tried to stand in the way of that. She is my beautiful girl and each day is hard fought for her life. But God is asking me to trust him with her physical life and her heart. He is also trying to rescue me from the way I have been harming myself spiritually, emotionally, and physically by trying to carry a load I was not meant to carry.
I don’t fully understand what this looks like day in and day out as I still perform my duties as her pancreas. And I know that Emma’s road is going to be hard and full of lots of gospel conversations. I know there will be tears, heartache, fears, pain and so many things I cannot fix or endure for her. I don’t yet have this perfected yet. I barely have a handle on it. There are many days with tears and some days where the little scraps of tape and glue I have holding it all together mercifully give way so that I can receive the grace that is being extended to me. This seems impossible to accomplish right now but I know that God will continue to patiently walk me through this. I know He will never give up on me.
I saw your post in my feeds on Facebook. My daughter has Type 1 diabetes. She is 32 and was diagnosed at 11. My granddaughter, from another one of my daughters also has it and was diagnosed at 9. I am a Christian and I have walked your steps. We have struggled with the lows and the sick days and even pregnancy! My daughter gave birth to a perfectly healthy baby girl who is 12 and does not have diabetes. At some point we just learned to trust that God would always be beside us. I still get late night calls that my daughter is really low and I should check on her in 5 min. It isn’t often but it is still scary. I too have prayed and wished they didn’t have to deal with this. There is never a vacation from diabetes. Yet we have had a blessed life. We choose to focus on the awesome people my granddaughter and daughter are. Ultimately every thing is secure in Gods hands. My daughter says she is stronger, smarter and a more compassionate person because of diabetes. My granddaughter believes diabetes does not define her. It is just a part of who she is. I think it has gotten easier as the years go by, I hope you find some encouragement in this. Being a Diaparent makes you a super hero.