Saturday, July 31, 2004 10:04 AM CDT

Sunday, August 1, 2004 1:00 PM CDT

I suppose I bragged too much on Kaity this week. As of Friday night she is refusing to eat again. I’m managing to get a few bites in her. I guess when she’s hungry she will eat. All I can do is offer food and drink and hope that she feels like taking it. She has done nothing but sleep the last few days. She does not appear to be in pain or discomfort. I know at this point, her comfort is all I can ask for.

Today’s Thoughts

I learned long ago to stop asking the question, “Why me? Why my child? I ask each of you to begin thinking anew and ask yourself, “Why not me?” After all, if not me, then who? The poor chap next door? Once I started asking myself, “why not me” my life took on a whole new meaning.

Find your purpose, but most of all find your child’s purpose. Why have you been given God’s angel? What can you do to make a difference? How can you make your child’s legacy live on?

I find my peace and ‘purpose’ by helping others. My life has changed because I have a daughter who has taught me to say, “why not us?” She is a joy and I would not change my life with her, even if I could. I have been blessed in ways that others have not, and for that I am grateful.

Jessica

Monday, August 2, 2004 10:51 AM CDT

It amazes me how Kaity can go from eating extremely well last week, to not wanting to eat anything this week. Thursday (July 29th) when Hospice was here, she weighed 30 pounds…evidence of a good eating week! This morning she weighed 27 ½ pounds.

I wrote to her doctor because I feared that not doing a feeding tube was cruel on my part. It is a mother’s nature to want to feed our children, as if somehow food will cure them. I wrote to her geneticist and he replied:

You are a great mom and never question that. As long as you can get some nutrition and fluids into her, a G tube or feeding tube is not necessary. I am certain that getting more calories into Kaitlynn has no bearing on her disease course. In fact, she has outlived most children with her disorder, a reflection of the care she receives.

His words gave me some comfort but it’s still not easy to watch her “bad” weeks when eating is not on her agenda. She seems to be in a great deal of discomfort this morning. Since she has no narcotics ordered for “bad” days, I gave her one teaspoon of Tylenol and one teaspoon of Ibuprofen this morning. Her pediatrician and Hospice want to hold off on narcotics until she truly needs them. Some days I have issues with this decision.

Hospice will be here today at 2pm.

Today’s Thoughts

I had the extreme pleasure of attending the Reserve Police Officer Academy last year. I’ve been unable to work, so a lot of good my training has done!

I remember quite a bit of what I learned but one instructor's words has remained on my mind since I listened to his class on Domestic Violence. He said something to this effect:

“How do you know when you approach these homes exactly what is going on? Don’t assume that because you are going to someone’s home that every single situation is criminal activity...How do you know that the family is not caring for a special needs child? Has anyone here had to change the diapers of a 17 year old? Imagine the daily stress the family has..."

He was reminding us that caution should be taken at each door we approach, but more than often there's usually an underlying reason for the domestic argument, which does not always includes a violent spouse or situation.

I’m sure the other students did not really hear his words. Only someone who’s “been there-done that” could possibly understand, but I was sitting in my seat squirming, feeling the sudden need to stand up and scream:

AMEN BROTHER BEN!!

Until next time.
Jessica

Tuesday, August 3, 2004 12:04 AM CDT

Kaity ate a fairly good breakfast this morning. She’s been peaceful since she woke up, so today is starting out good for her. Mommy on the other hand is having a pity party! Margaritas served at 3pm if anyone wants to join. As Tami says, “I’m sure it’s 5:00 somewhere!”

I cried myself to sleep last night, only to begin the same cycle this morning. It is now past noon and the wave has finally ended. I couldn’t quit crying long enough to eat my breakfast but at least my sandwich for lunch went down. I guess that is a plus.

I suppose I’m entitled to a pity party every now and then. I haven’t had a REAL good one in quite sometime so I was due. *It is a little known fact that if women don’t cry their tear ducts will swell up and explode.*

I have a lot of emotions and problems that many do not know about or cannot remotely comprehend. As for telling the internet world my problems today, I’m just not up to it.

I contacted my very good friend in Mt Sterling, KY this morning. I always call her when I’m sad. She lost two boys to Hurler’s and knows exactly how I feel. I’m so happy to call her my friend.

Today’s Thoughts

Thank you for checking on Kaity today and thanks to each of you for showing extra support to me yesterday, either by email or phone...you know who you are! xoxo's

__________________________________________________________

Kaity ate breakfast this morning, reluctantly, but ate it none the less. Yesterday I piled her up in bed with me because I needed a nap. I felt the need to be near her. She was fast asleep in about 3 minutes. I spent the whole time looking at her. I tried to nap but it never came.

A few minutes with my Son

My son, Josh, is 19 years old. Since he was six he has been dealing with his sister’s diagnosis. I was having a very difficult day yesterday and he could tell I was upset. In the past he would try to comfort me by saying, “I love you Mommy” and rubbing my back. He would then trot off to do his little boy things.

Yesterday was evidence of how he has grown up. He returned from work and was preparing to take his date to the county fair. He stopped his activities to sit with me for a spell. I explained to him why I was upset and he began to give me his opinion. Luckily everything he said was exactly what I needed to hear.

One of the most important and memorable things he said was, “You know what upsets me the most about Kaity’s illness? I feel like I am now an only child...even though she’s still with us. I feel bad because I’ve always gotten everything, and Kaity gets nothing.”

I was in tears over that comment because my fear for Josh has always been that he was deprived. His Dad and I have always been focused on Kaity’s needs. We feel like we have missed his entire childhood. We fear that all the missed camps, ballgames, school activities, family vacations...it is all too late for us to enjoy.

I thought for many years he blamed Kaity’s illness for things he couldn’t have. On the contrary he felt hurt because he received things in life that she did not. My heart was hurt for him but at the same time spilling over with love and respect.

I won’t go into all the other wonderful things he said because he talked to me for a good 45 minutes before rushing around and almost being late for his date. :)

Since the topic of siblings is currently being discussed on the forum, I wanted to tell each of you that sometimes you may feel guilt for the child that is not sick. You may feel the time spent with each child is not nearly equal, but please do not fear the future. Your children will grow up to be good people. They will love you and they will understand the position that many of us are in as parents.

My conversation with Josh was much needed yesterday to assure me that I was a good Mom.

I love you Josh

Today’s Thoughts
I try to tell my children daily that I love them. Everyone dies and we never know when our time will end. When my time comes I pray my children will know that I loved them.

Kaity does not want to drink this week. Perhaps she is just forgetting how to swallow. I truly don’t know. I was only able to get about 6 ounces in her yesterday and that’s only because I opened her mouth and let it pour down. Most of it runs out of her mouth. She’s eating, but only with reluctance and gagging with each bite.

The eating issue is really starting to get to me. I’m about ready for the NG-tube just so I can end her frustration and mine. It seems like life would be a whole lot easier on everyone.

I can’t write much today. I’m not really “depressed”...depression and mental fatigue are two separate things. Believe me when I say I have personal knowledge enough to know the difference! I think all the talking on the phone for two days was extremely helpful, but today I’m just drained.

I’ll write more this evening or tomorrow.

Love to each of you.

Prayers, love and thoughts for Miss Caterina and Evline who are undergoing bone marrow transplants for Hurler Syndrome.

Updated 9:30pm
I gave up after a horrible breakfast and lunch and used a syringe at dinner time to at least get a few drinks of milk down Kaity. She would not swallow any food, but at least I was able to get a little bit of supplement down her.

She slept practically all day with very little movement.

~Jessica