Ok- so I just finished my last post a few minutes ago and then went to check Jada's blood sugar. She was at 121, which is actually a great number for her. However, it's not high enough to get her through until morning. So, I attempted to wake her up and feed her some cookies from a 100 calorie snack pack. While I never got her eyes open, I managed to feed her the cookies one by one- it took about 15 minutes to do it. While I was feeding her, I started to think about the most frequent question I get asked- which is- What has life been like since your little girl was diagnosed?
My response:
It has been like bringing our first child home from the hospital. I was nervous about everthing. With a newborn, you worry about sickness, whether they are eating enough, going to the bathroom enough, whether or not they are sleeping enough- wondering why their eyes keep crossing and if they will ever be able to focus. Nursing was difficult with my first child- he was a better sleeper than eater. I was exhausted from trying to feed him in the middle of the night when he really needed to eat, and he just wouldn't wake up unless you got him completely naked!. I would find diapers that had been changed in the middle of the night in different places around the house. Can't tell you how many I would find underneath our bed. I didn't want anyone else to care for our new little one- in my mind, I was barely capable, how could I dare let anyone else watch him? And the greatest thing that I discovered- was that I had this huge capacity for love that I had not formerly known. I would hold David and cry, just because he was mine- the greatest gift the Lord has ever given Jeff and I. I wanted to hold him tight and not let him go, because if I did, I knew he would grow up on me.
So- now- I worry about Jada getting what should be a simple stomach bug, because it could be life threatening. I worry about what and how much I give to her. Do I give her more if she wants more or do I tell her no? I worry when she is too thirsty and wets the bed at night- because when she does, she is way too high, probably has some ketones going on. I worry when she sleeps too long, because she may have passed out in her sleep and I'm gonna have to use that darn glucagon kit. I'm now feeding another child in the middle of the night- her life depends on it. Now- I find used test strips around the house. I always think I throw them away, but manage to find them in odd places. It's not a good thing to find a used lancet on the floor, it kind of hurts when you step on it. As for caring for her, my goodness. It's incredibly difficult to even leave her in the preschool room at church when I'm in the same building- let alone leave her with a babysitter. We've done it, once- but we left for our date after she had eaten, had a shot and a bedtime snack. Our family members at this point are too terrified of this disease to even think about watching her- and I'm okay with that, but I do think about what would happen to Jada if something happened to Jeff and I.
Most of all, I cry. I cry alot. I cried tonight as I held her and helped her get those cookies down. I cry over her several nights a week before I go to bed while praying over her. I hold her a little longer when she wants to cuddle with me. I ask God to heal her and take this from her, but then tell him, "She's yours. She really belongs to You. If this disease brings you greater glory and creates a greater dependence on You for myself, and for Jada, then don't take it away, because we will be better for it."
So, for you parents, who have kids that are newly diagnosed, hang in there. Obviously, you've had a newborn and you made it through some of those slightly scary times- you can make it through this, too!
4 comments:
I did a search for blogs that mentioned CR and found you. It looks like we have several things in common other than CR. :)
I agree, having a sick child is just like bringing home a new baby. My son has Insulin-like Growth Factor 1 Deficiency (IGFD). Although not life threatening like diabetes, it can be scary. Right after I read your post, my Little Man came to me and said, "I don't feel good." I interpret that to mean, "My blood sugar is low and I need a snack."
It is really hard to trust others to take care of a sick child. I'll keep you and your little girl in my prayers.
Thanks for your comment! Congrats on your new one- sounds like you are due any time!
I have never hear d of IGFD- I'm going to have to look it up and see what it's all about. Blessings to you!
As usual, you amaze me in all you go through with Jada and still come out willing to do it all again the next day. I'm barely functioning with one healthy child. Who would have thought nearly 20 years ago that we'd both be mothers facing the challenges we face? I'm so proud of you for having the outlook you do and being willing to tell God to not take it away if it's part of His plan for your lives. So when are we going to schedule a playdate? (I know, it's a long commute. =p)
Hi Amy! I found you via a comment you left on Penny's blog. Your post is so true...that is exactly what I thought of when I brought my daughter home from the hospital after her diagnosis. She was just a little over 3 at her diagnosis so I know at least a little of what you are going through.
From what I have read so far it sounds like you are doing a great job at staying positive!
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