Saturday, August 11, 2007

Miss Jess..... and worries about death

This is not the easiest of subjects. I know that many of you may not be up to reading this post and that's ok.... but I do want to warn you that there are some good things in here as well as the difficult stuff, so if you skip it, you might miss out.

I don't write about a lot of the conversations that Jess and I have or some of the stuff that we deal with ... but then I got to thinking that maybe I should. Jess talks to me but who do I talk to? I talk to Karl about it sometimes but he gets emotional... afterall, it's his little girl too. So I thought I would bring it here. I have had to learn to be calm when we talk about these things. I don't mean that I am cold... I am very compassionate but I don't fall apart. I have wiped away tears and let Jess see that sometimes, but on occasion I fall apart later, either when I'm by myself or with Karl.... but usually after it's been building up for awhile.

Miss Jess has been having some rough nights. She has been emotional and having anxiety. Weird thing is that she shouldn't be PMSing so I can't blame it on that. She has been fixated on death though. She has been causally talking about what happens to a body after it's been dead for awhile. We talk briefly about that and then I will quickly bring up our beliefs about what happens to our spirit once we die. I talk about how beautiful heaven must be and how we won't have any pain. We talk about who we know who has died and that we will be able to see them again. We discuss about some of the kids that she has known who have died from either CHD or other illnesses. We talk about how they must be running and jumping, swinging and dancing as much as they want - things they couldn't do when they were sick and sometimes never had a chance to do here on earth. Sometimes she will even talk about famous people we would want to meet.... Jessica mostly brings up people like Moses or Noah. On occasion she will learn about a former president of the US or a queen of England from a long time ago and she will brighten up and say, "Hey! I can meet them when I go to heaven!" LOL. She LOVES the thought of meeting royalty. After all, she is at the level of a 6 - 8 yr old and what little girl doesn't want to meet - or even BE - a princess?!

Well, tonight she seemed to be doing ok but got up a few times. With her anxiety she picks... she picks her skin on her arms, face and her toenails. (she has many scars on her arms and face from picking sores) Our biggest concern is infection. She has no idea how easily and infection could go to her heart and she could get bacterial endocarditis. So I caught her picking her toenail and making it bleed (she could cause and ingrown toenail!). I was not happy and I scolded her. (I have to treat her with kid gloves most of the time.) I had had it. The last 3 nights in a row she had kept me up until after 3:30 am and I have someplace I need to go tomorrow. I'm tired of having to take naps during the day because I don't get much sleep at night and the last few posts here have been regarding my health... obviously I don't feel well as it is. Well... my scolding set her into tears. Big 'ol alligator tears. I had been chatting online with my sister and had to go care for her. *sigh* (this is the sister who's son has cancer and I haven't had a chance to talk to her lately)

Jess was crying and saying how sorry she was that she had picked her toes and she hoped I would forgive her. I apologized for snapping at her and I asked her if she would forgive me. She nodded her head yes. I told her that of course I forgive her. Then she started crying again and asked if Heavenly Father would forgive her too? I said of course He will. She started talking about how she just wanted to give Heavenly Father and Jesus big hugs and how she wished that they could come so that she could hug them. She also wanted to tell them that she was sorry... so we decided that she should pray to ask for forgiveness. She started out by asking for forgiveness and telling Heavenly Father that she loved him. She then asked Him to forgive everyone, even if they didn't say they were sorry, but to please forgive them anyway. She is crying through her whole prayer and I was watching her... (I know, shame on me for not closing my eyes) I just looked at her profile, tears coming from her closed eyes, arms folded, purple lips and nose as she lay in bed pleading to her Father in Heaven to forgive her. I saw such an innocent, beautiful, angelic child who wanted to be perfect in every way. She went on to bless her cousin Marcus and our next-door neighbor, Donna, that they would be able to fight their cancers and to please not let them die too soon. "I will really miss them and I love them", she pleaded. She must have told Heavenly Father at least 5 or 6 times in her prayer that she loved him and Jesus too.

After her prayer was over I told her that Aunt Karen said that Marcus was doing pretty well. Jess said that she wished that Marcus's cancer was gone! I agreed with her. Then she said that she hated that Donna's cancer was back. "What if she dies?" I told her that we would miss her but we will always love her. The tears started back up and she said that Donna is the best neighbor friend that she has ever had! I agreed but told her that even once somebody dies, our love for them doesn't stop and we carry their memories with us always. We started talking about my grandpa H who's chair is in Jessica's room. She says that she likes sitting in it because she can feel his spirit holding her. My grandpa died before Jess was born but she has seen pictures of him and we talk about him and my grandma. So we started talking about great-grandpa and great-grandma... I told her some great stories about them and then we talked about my other grandma T (who is still alive) and her brother (who died just a couple of years ago). We have video of when Jess was about 3 yrs old and we got to visit with my grandma T and Uncle Melvin and Aunt Ada. I told her stories of how Uncle Melvin would tease my grandma T. He always called her "sis". Jessica started to laugh at some of the stories. I told her some stories of times I spent with my grandma and grandpa H. Then we talked a bit about an adventure we are going to have on Tuesday. We have to have some electrical work done at our house in order to continue the work on enclosing the carport so the power will be shut off most of the day on Tuesday. The boys will start school that day so I will take Jess out to grandma and grandpa Jensen's house for the day. I told her that I have wonderful memories of spending time with my grandparents and now it's her turn to make her memories with her grandparents. She smiled and liked that idea. She was FINALLY calm. She said that maybe she just needed to get all that out. I think I have to agree. I guess she has been so worried about herself dying, her cousin dying and even our next-door neighbor (who's chances of surviving 2 more years are only 30% - but Jess doesn't know that)... Jess just needed to get all that anxiety out.

In fact, a few days ago, she has asked me several times if someone can die from ulcers. She knows that she has ulcers and that's why she has to take the carafate. I told her that no, people don't die from ulcers. She then asked me if people can die from coughing up blood. Now Jessica hasn't coughed up blood for a couple of months but sometimes she can feel and taste blood in her throat, so I'm sure she is scared. I said that it would have to be a LOT of blood for someone to die. She asked, "like a cup?" NO, more than that. Like a bowl? No, more than that. I put my arms out really wide and said, "at least THIS much blood". "Like a RIVER?" I smiled. Yes, like a river. She knows she has never coughed up THAT much blood... not like a river, so she seemed to be ok with that. At least for a couple of days.

So here I am, typing at almost 3:00am about my daughter who is such a little girl in so many ways... who at her age should be dating, going to college and planning her future... but instead is playing with barbies, dreaming of princes and princesses, and worried about dying. I wish I could take that last part away from her. I wish I could take it away from all children who have life-threatening illnesses. I wish us parents didn't have to worry and watch our children worry.... and miss out on many of the "normal" things in life, not to mention the medical stuff they go through.

But on the other hand.... the faith my daughter has is amazing. She was truly sent to me to teach me and inspire me. I have never prayed harder than when she was hurting or near death. I have seen miracles. Another thing that Jessica brought up as she was having her anxiety, was that there are so many bad things out there. I told her that they would not come in here (meaning our home). I asked her who it was that made her live when she almost died when she was three? "Father". Who was it who gave you your eyesight back when you were blind? "Father." Who gave you back your strength and helped you learn to walk and everything again when you were paralyzed? "Father" Now don't you think that your Father in Heaven can bless you and protect you now? She nodded. "Of course He can. We just need to have faith and not worry about all that bad stuff." I reminded her that Mommy and Daddy do everything possible to protect our children. I reminded her that Heavenly Father blessed her with parents who love her more than life itself. He blessed her with brothers and grandparents and aunts and uncles and cousins who love her too. He also blessed her that people all around the world know about her and pray for her all the time.

We are truly blessed. Even at 3:20 am and are not sure if we will ever get to sleep tonight. Jess just got up AGAIN. She was looking for her CD player. *sigh*

Is there an anesthesiologist in the house?





Ruth said...

Nancy, you are amazing. Yes, I know...we do what we have to, but you handle everything with such grace and faith. I wish I could make everything better for you both.

I'm sorry I had to go last night while we were chatting.


Valerie said...

There is only a 12 more hours to tell me why you need that great CHD hat. Put it into today's post or the one where I am standing next to the amazing Dr. Mainwaring. Tell me in your most creative way why the hat would be perfect for you. To see a pic of this wonderful hat scroll down on the right side and eventually it will appear.

Just added: a $50 gift card to Target! Good Luck!!

Rene said...

Your post today brought tears to my eyes. I know in my heart that Miss Jess was put on this Earth to teach us all a little something. I wish, I wish there were something more that could be said or done to ease her mind. The only thing that comes to mind would be a Blessing (for comfort). I so, so know about the lack of sleep. I am up until 4 in the morning most nights. Try to take care of yourself. (((BIG HUGS))) to you both!

chelle said...

HUGS! These late night conversations must be so hard to endure. You are an amazing woman.

Mama Bear June said...

I can relate all too well to those kinds of conversations. There's nothing harder than watching your child realize or hearing them admit that they know they won't live to an old age. Nothing.

I'm the same way, I'll be pretty calm DURING, but afterward when I'm alone, I lose it. And they usually do happen in the middle of the night!

God definitely knew what He was doing when He chose you to be Miss Jess' mommy. Sending hugs and prayers.

Melany aka Supermom said...

Lots of hugs.

Anonymous said...

First I have too say that I was just thrilled to hear from you - you have been for front on my thoughts lately and I told myself that when I checked today (first time this week I had had a chance)if you hadn't written then I would email you and make sure everything was ok.

You have a truly amazing family and I want you to tell Jess that I think she is a wonderful daughter of God and I know he loves her Sooo much - as are you. I see such strength and faith in both of you and it touches my heart and increases my testimony. I know things are so tough and difficult and yet you continue to push through. You two are AMAZING!

Sending you both millions of hugs - I wish I could be close and really meet you guys and give you hugs in person, but cyber hugs will have to do for now. Maybe some day... :)

Awesome Mom said...

This is late but I am sending a lot of cyber hugs your way. It has to be so tough to be so strong for Jessica when you feel so weak. Feel free to lean on us when you need to.