Sibling Care: How much is too much?

Today my first baby turns 17!! SEVENTEEN....seems like yesterday she was born. She has learned J.J.'s diabetes through watching us, asking questions, and being willing to be an active part of J.J.'s care. Not all siblings would be as active as she is. I realize that, and thus I realize what a humongous blessing she (and her other sisters) are to us. But I question.....how much is too much? When is the weight of this disease too much for a 17 year old to carry....when she isn't the one with the disease? How much can we put on her shoulders?

I definitely had these questions the weekend Jason and I were able to get away. SHE was THE reason we were able to go. The first 24 hrs went smoothly. We had constant contact with her and answered any diabetes care questions over the phone. We were less than an hour away, so we knew we could be home at anytime to fully take over if she needed us.

The second night, however, is when the care became more difficult. The children were staying at a friends house, but they hadn't stayed there before. J.J. had anxiety issues......shown only by higher BG numbers. But at the time we didn't know what was causing the highs. Unfortunately all of this started right at bedtime!!! The worst time to deal with diabetes highs!!!(or lows for that matter!!)

We could tell the pressure was getting to Jessica. Even though we could guide and direct, she was feeling the weight we feel. She was carrying the burden of waking up every hour to make sure he came down. She was carrying the burden of trying to make sure the infusion site was still attached and the tubing didn't have air bubbles. She was there...not sleeping....tired.....lonely. We were NOT THERE....taking phone calls hourly....awake...tired...scared....wondering..."Do we go pick him up?" "Will he come down?" "This is too much for her.....did we do the right thing?"

Even though Jess was more at ease in the morning, in spite of the fact that she had to continually dose with a syringe throughout the night, my mind still wrestles with......HOW MUCH IS TOO MUCH? And even though as I voiced my concerns her reply was, "It's all good Mom. I get a glimpse into what you and Dad have to go through." I still wonder......HOW MUCH IS TOO MUCH?

I may never really know the answer to that question....or maybe one day when Jess is older, maybe married with kids.....I'll ask her......WAS IT TOO MUCH FOR YOU? And her reply will be "Yeah, maybe.....just a little."


FOOTNOTE:
I finished writing this post when I asked Jess to proofread it. I didn't want to write about her, without her approval. She reads it and chuckles....."Dad asked me the same question this morning when we went to breakfast." SEE....it's on his mind too!!! I then asked her what her answer was. This was the gist of her reply....(or the beginning at least)....

"Yeah, it is hard, but I know that. I also know if I never challenge myself to do hard things I'll never grow. It's in those hard things of life where people grow the most. I also would hate to not do it because of how much it means to you and Dad........"

And this is where it trails off because my mind just couldn't wrap around the maturity I was hearing from her. I interrupted her and said "You are wise beyond your years."

So maybe she's actually given me the answer to the question "How much is too much?" when it comes to siblings caring for their diabetes brother or sister. The answer is "It depends." Depends on the sibling. Diabetes is a hard disease.....whether a sibling is willing to take on the challenge and carry the weight really depends on them, their attitude, their willingness to help, their maturity level etc. It will be different for each sibling.....as I can attest to in this household.....not every sister takes on the same amount of responsibility. Each family has to work it out as best they can. Some may never want to give any responsibility to the siblings....or the siblings may never want the responsibility, some...like us....consider it a privilege to have the extra help.

Thanks Jess.....and thanks Hannah, Sarah, (and sometimes Allison).... for helping us manage J.J.'s diabetes. You are a huge blessing to us!!! We love you!!!

He's Not Dead Yet......

Living out in the country does have it's advantages when raising kids. They have so much room to grow. I've enjoyed the fact that the kids can go pretty far and I still know where they are. I can hear the laughs and shouts through the woods at least the distance of 5 city blocks. Since it's still cold and snowy, they haven't roamed too far yet, but I knew a day would come when I would have to have a serious talk with all the kids about being on one of their "exploring expeditions" with J.J. I just didn't think it would happen when he was just playing around the house.

I was inside helping one of my older girls sew a purse together, when another older girl came through after being on a horseback ride and says she's heading out for a jog. J.J. was outside playing with his two older "younger" sisters and I hadn't seen them pass by our big picture window in a few minutes. So I asked the older daughter who had been outside, and who was going back outside....

"Have you seen J.J.? Is he o.k.?"

When from behind me I hear:

"Don't worry Mom. He's not dead YET!!"

WHOA!!! I know I didn't hear that!! But wait.....I did!! It was then I realized that the kids have been trained to help spot the lows and to quickly treat the lows if for some horrible reason I am not capable of doing it. I haven't told them WHY. I've been trying to spare them of the weightiness of all of this.

I calmly set down the iron, and picked up the fabric I needed to pin together and gently explained the gravity of J.J. going too low and no one being around to help him. About how important it is that someone is always aware of where he is AT ALL TIMES and knows what to do because it is a LIFE or DEATH situation. When I was done explaining this I said, "I hope I'm not freaking you out too much."

Their responses:

"Well, you are freaking me out."

AND

"A couple days ago, I think I just figured out that, yeah, he could die....that this is serious."

I am so very glad they can just continue on being kids.....I don't even think I want to share this with the two "middles", but I'm sure it will have to happen some day. I know J.J. doesn't get it, and that's fine with me......he knows how important it is to tell me when he feels low, but I'm not sure he really needs to know or could fully understand at his age WHY telling me is so important.

For now, having the 15 year old and 12 1/2 year old understand will be good. I'll consider the extra pair of eyes a blessing....and hopefully there won't be any more comments about him being dead.....for indeed he is very much alive...PRAISE GOD!!

Are you low?.......

J.J. was somersaulting around the basement when my oldest daughter came up to him and said:

"J.J. are you low?"

J.J.'s reply (while somersaulting):

"N0...I'm happy!!"

Ah.....wisdom from a 5 year old!! Being low does not equate with being happy!!:-)

Jessica's Journal......

I have asked each of my older girls to write in their journals about J.J. and his diagnosis. Jessica (15 next week) wrote quite a bit, as she is very much another “Mom” in this house. It was interesting to see what she remembered. She was our babysitter the last two evenings before J.J.’s diagnosis, when he was really sick. There were circumstances I didn’t quite remember. I’ve only included the ending of her journal entry, since it includes much of her feelings and reaction.

Excerpt of Jessica’s Journal
Her Reaction to J.J.’s diagnosis

They put him in I.C.U. and I had to leave for I wasn't his mother......
I was worried. I kept thinking, “He will never be the same again. J.J. will be insulin dependent for the rest of his life.” In church on Sunday many people came up to me and hugged me. I can’t say how encouraging that was. It made me determined to encourage other people when they are down. In 2nd hour I almost broke down, I could hardly sing.

Our pastor’s wife took us to see J.J. It was then I broke down. People said it was stressful for me, but I didn’t realize it then. I didn’t want to admit that it was stressful. Now I look back and see that it was stressful..... that I was burdened with worry for my brother and his illness. One verse that our pastor’s wife reminded me of was Romans 8: 28:

“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

I shouldn’t have worried. J.J. was and is in God’s Hands. Everything that occurs is in His perfect plan and it is my job to trust and obey.

J.J. came home on Monday. It was so cool to see him playing with his sisters again. He didn’t have a care in the world (until he had to have a shot or a finger poke.)

Life became very different. We had to live from blood check to blood check. But it quickly fell into place for me at least....for my parents that is a different story. After a few weeks I began to accept J.J.’s diabetes. It became a lifestyle.

Our life is still hard and there are still more difficulties to face with my brother’s disease, but God is still sovereign and I pray that through this disease my family will learn to trust God and to give our burdens to Him. He will take care of all the details.

Psalm 62:1,2
My soul waits in silence for God only;
From Him is my salvation
He only is my rock and salvation, my stronghold;
I shall not be greatly shaken.

The Same Old J.J....

I asked the girls to write in their journals their thoughts and feelings about J.J.’s diabetes. This is Sarah’s…age 10:

How I feel about JJ’s diabetes

by: Sarah Bretz

Feb. 15, 2008

I’m sad that he has it and I would not like to have it, but I am glad that I know what it is. I did not know what it was before J.J. got it. He is the same old J.J., but he just has diabetes.

February 18, 2008-----Happy Birthday J.J.!!!

Thought I’d share a quick recap of J.J.’s 5^th birthday!! The day started with me baking his cake. This was the first time I’ve baked something really sweet since his diagnosis. The process was typical except for the fact that I couldn’t just let the kids lick the spoon, bowls, beaters, etc. That was somewhat sad, as that is a fond memory I always had as a kid. But it wasn’t too bad because only a couple of the girls were in the room drooling, while J.J. was off playing so he didn’t even notice I put everything in the dishwasher right away. We’ve gotten used to the fact that we calculate all the carbs for his meals, etc., but counting the carbs for this cake was a shocker...powdered sugar has a ton of carbs!!

I decided to take the kids to the gym with me to go swimming…..at first J.J. didn’t want to go, but we convinced him it would be fun. It took him over an hour to finally decide he could leave the stairs of the pool….he’s very cautious!! Once I got him out there he had a blast!! We ended up staying 3 hours!! I checked his blood every hour. The first time he was 98….so I gave him a juice box….next hour 160…left him….next hour 78….gave him crackers since we were heading home. His exercise is so unpredictable…..sometimes he skyrockets, other times he crashes.

When we got home he had his birthday dinner….hamburgers and tator tots. Then he opened his gifts. It was a Lego year!! The rest of the evening we sat around putting together Lego kits. We then had cake and ice cream…it’s hard for me to believe he can have cake and ice cream!!! When we were in the hospital with him I thought he’d never have a normal birthday again!! Our endo has us giving his shots after he eats, rather than before, but this time I went ahead and gave it before we even sang to him…knowing the high carb content, and the fact that they were fast acting I wanted some insulin on board before he ate the cake and ice cream.

I only choked down tears once today….when he first started coming off the stairs at the pool.... he was just having a blast swimming to me. He was so happy and giggly. I am just so thankful that he truly is the “same old J.J.” Thanks, Sarah, for that reminder!!

Sarah.... steps up to the plate....

Diabetes affects everyone in the family....not just the child and parents, but the siblings as well. It will be interesting to see how this ultimately impacts each one our children.

So far we have not asked the girls to help with J.J.'s diabetes. This is our responsibility and we know that. Jess(14 y.o) took one of the classes with us in the hospital, but is somewhat apprehensive. Hannah(12 y.o.) is just too scared she will mess up somehow. If they were to show interest we would definitely teach them at least how to check blood. It would be nice to know there is someone else in the house that could take over in the event something happened to me or Jason.

Well....yesterday Sarah(10 y.o) stepped up to the plate. She asked at dinner if she could check J.J.'s blood for us....meal times are always rushed now with measuring food, checking blood sugars, recording carbs, etc. The first finger poke she completely missed the skin....J.J. said "You didn't do anything, Sarah." The second time she did it and got enough blood. This morning I let her do the entire check herself. J.J. was tired and didn't want her to do it, but she did great. Much better than my first few tries.

I'm not sure if she gained confidence after we watched a video together we received from the American Diabetes Association. It was an introductory video explaining diabetes to newly diagnosed patients. The "actors" were just normal kids with diabetes. I think the kids gained a lot of great information and it was good for them to hear from other kids what it's like to live with diabetes, and how they manage it. All the kids in the video were of course healthy active kids. I think the video helped ease the girls' fears after seeing J.J. so sick in the hospital.

Sarah also caused our hearts to melt yesterday when she offered her $500 savings to go towards helping J.J. get the pump. We've already adjusted their lifestyle some....as a family we decided to forgo 4-H horse activities this year as that is one of our biggest "not so necessary" extracurricular activities.....besides Jason sold the vehicle that would transport the horses to the practices etc.....anyway......I explained a little more in detail yesterday why we've adjusted our lifestyle a bit, and a little into the decision making process. That's when she said "J.J. can have my $500 savings. I don't know what I'm gonna do with it." She has a sweet tender heart!!