For the next few weeks I’m going to let you see behind the scenes and look at the real work that goes on in a family that has a special needs child/ren. We aren’t looking for pity but we are looking for understanding. Sometimes I can’t seem to tell people what I’m feeling or the needs I have that week and all I can say when people ask me is “I’m fine” or “Great”. I’ve asked a few other mothers who I’ve met through the blogging community to talk to us, and to tell us of their struggles and hardships and yes the joy and rewards found in our chaotic, busy, crazy, full, blessed lives. Please be considerate and gentle if you comment on this series.
Erin is a blogger at Momma’s Living Room and I’m simply blown away by the work she puts into her blog. I’ve done a few of her devotionals and all of them are simple, easy to understand and deeply rooted in the Bible. Head on over to her blog or you can find her on social media (links below) and I know you will be blessed.
Why, hello there! I’m Erin! I live in the Pacific Northwest with my husband, two little boys, and four fur babies. I enjoy cooking, baking, writing, reading, and much more.
I’m an avid consumer of candy, sugar, and caffeine. I’m also an aspiring cat lady. I write on my blog to share my love for Jesus and my family. My hope and prayer is that my words are used to encourage you and we journey through this life.
Tell us who you were before this started.
I was the mom who was reveling in my son’s independence. He was able to wake up at his usual time (6am), go to the kitchen, and make himself breakfast. His usual choice was peanut butter sandwiches, but he also had the option to freely pick snacks and foods to calm his hunger. I loved that I could sleep in a bit longer without immediately having to jump into action.
What changes did you need to make in your personal and family lifestyle to accommodate your son’s needs?
The mom of a young child usually carries a diaper bag full of supplies (diapers, formula, pacifiers, blankets, etc). My son, at 5 years old, carries his own bag of supplies. He currently carries two different kinds of insulin, a blood glucose meter, snacks for when his blood glucose is high and snacks for when he is low. He carries alcohol wipes, needles, extra test strips, even batteries for his blood glucose meter. We also will carry a sugar-free drink of some kind. We have to be ready, at any moment, to give him life-saving snacks. If we wait too long and he’s low, we run the risk of coma and death.
What was your lowest point in being a caregiver?
We’ve had many low points. I remember having to hold my son down to give him a shot. He needs the insulin shots. He is insulin dependent. If he doesn’t have insulin, he will not survive. But listening to his screams, watching his fear, and knowing that he was so sick, it was a low point, definitely.
Another low point was the realization that other people who could care for him don’t understand the seriousness of type one diabetes. I had taken him to church a couple weeks after diagnosis. As I shared with his teacher what to be looking for, she just kept dismissing me. She heard the word “diabetes” and assumed I was a crazy parent. The point is, in the hour that she would have cared for him, if he had low blood sugar he could potentially be in a coma before the hour is up. Type One Diabetes can be very serious. The crazy part is that the simplest steps on anyone’s part will ensure that he stays healthy. Treating low blood sugar is as simple as handing him a juice.
What was your highest point in being a caregiver?
The highest point was the very first time I gave him a shot and I didn’t have to hold him down. My husband had returned to work and it was the very first time that my son and I were alone. If I needed, my husband would be able to come home and help, but I was begging both God and my husband that we wouldn’t have to resort to it. It was a great moment of celebration.
How has God made HIMSELF real to you in this situation?
By simply being faithful and present. One big part of Type One Diabetes is that doctors and nurses will tell you to trust your instincts. The other day, beyond all logic, I felt the need to check my son’s blood sugar. He wasn’t acting funny. He didn’t look pale. He wasn’t sweating. He wasn’t incredibly hungry. There wasn’t any reason to check his blood sugar. We discovered that he was experiencing his lowest blood sugar yet! I don’t think that was my own instincts. I believe that it was God prompting me to check. If left untreated, he was not that far away from having a very big problem.
RELATED POST : A guest post by Erin Nicholson.
What is your favorite song, verse or sermon that is helping you to get through this situation?
None of these. What gets me through is what God had spoke to me just after diagnosis. God had told both my husband and myself that my son has to walk through this. As people around us were praying that my son would be cured, my husband and I both knew that this was not the case. It was so clearly stated by God to us. We know that if my son is ever cured, he will be cured along with all the other type one diabetics and that is when a cure is discovered. We know that for whatever reason, God has called my son to walk this journey. I know that if God is calling my son to walk this journey, that God will not leave him alone on it. God has been incredibly faithful and trustworthy so far. I have complete peace about my son’s diagnosis.
Bust some myths for us. Tell us what Juvenile Diabetes is NOT.
When people hear the word “diabetes” they think of the common form, which is Type Two. Type Two is insulin resistant. The person’s body still produces insulin. They also think about people who have been cured through diet and exercise.
Type One is an autoimmune disease. It happens when the body one day decides that it is allergic to the cells that produce insulin. You need insulin to convert the sugar into energy. Without insulin, the person essentially starves to death (no matter how much they eat). It acts like the body is allergic to those cells and it attacks them until they are dead. Unless a miracle is performed, you can’t come back from dead. After the honeymoon period is over, the body will be producing virtually no insulin. Type One has no known cause. They don’t know why the body suddenly decides to turn on itself. It isn’t something that can be cured with diet and exercise. Type One is also known as Juvenile Diabetes. Anyone can get type one diabetes, not just kids. They will also not outgrow type one diabetes, it is a life-long (until there is a cure) disease.
Type Two diabetics are generally limited on how many carbs they can have. Type One is allowed to eat anything that anyone who doesn’t have diabetes is allowed to eat.
What does self care look like for you?
For me, self-care looks like handing over the shots to my husband. Self-care looks like letting someone else count carbs, do the math to figure dosages, and actually give him the injections. When my husband is not working and is home, he is in charge of a lot of the injections. I never wanted to be the only one taking care of my son’s diabetes, simply because it’s a 24-hour job. We have to wake up during the night to check his blood sugar and be up with him when he wakes up in the morning. We always have to be on our guard. Self-care is letting others take care of my son. By letting them share in the burden of caregiving, our whole family benefits.
What hope can you give families going through the similar situation?
We have heard two pieces of advice that have changed our thinking. When they first send you home from the hospital to care for this fragile diabetic, it’s terrifying. You constantly worry about messing up (and you will, but you have the tools to handle it). We were given our first piece of advice from our son’s doctor, that was this: Let him be a kid. He can eat anything everyone else can. He wants a cookie, give him a cookie. He want a cupcake, give him a cupcake. Let him be a kid.
The second piece of advice was this: Diabetes is along for the ride, diabetes is not in the driver’s seat. Diabetes doesn’t dictate our lives, it comes along for the ride. It’s taken some time to understand how this applies and as time goes on, it makes more sense. When we make plans to celebrate my son’s birthday cupcakes are included, we won’t change this plan at the last minute because of diabetes.
When his brother is eating candy and he wants a piece, we let him have it. We choose to let him be a kid. We choose to make diabetes take a back seat. That doesn’t mean that we won’t also insist that he eat a cheese stick to go along with it. It’s all about balance.
What is your favorite worship song?
I hope you have been encouraged reading Erin’s post. Our God is Faithful and Good and He is Sovereign. He knows what He is doing.
Until next time,