Saturday, August 7, 2004 11:04 AM CDT

Many of my family members are still here and I’m unable to write in great depth today. Hospice will be here at 2pm to check on Kaity’s status.

We have been able to get fluids in her by using a syringe but she is unable to swallow food. She is taking her milk supplement and water in small quantities. She drank a total of 16 teaspoons all day yesterday. She has lost another ½ a pound since yesterday and now weighs 25.5 pounds. Kaity is very peaceful today.

Brian made it home about 10:30 this morning and has not seen Kaity for a week. He is having a difficult time this afternoon but we are all trying to hold our heads high for our Kaity Bug.

I will write more when I can. Thank you to everyone for keeping our family in your prayers.

Love,
Jessica

Updated 7am Monday, August 9th ~ Kaity slipped into a coma in the early morning hours.

Updated 11:30 pm-Sunday August 8th

My Dad told me today that I needed to write in Kaity’s journal. I haven’t written, not because I didn’t want to, but mainly because so many people have been around and I simply haven’t had time.

Dad said that sharing with others is what will help the next person who loses a child, so I decided to say a few words.

It is late now and everyone has gone home. Brian was so tired by the time everyone left that he went straight to bed. I made a pallet on the floor beside Kaity. I wish now that she didn’t sleep in a crib so I could climb into bed with her. I want her near me constantly. My fears of losing her are so overwhelming, yet I want her to be an angel too.

Kaity received so much love today. I can’t stop kissing her and rubbing her face. She is so angelic. She has blessed me in so many ways that now I’m wondering how I’ll ever be able to let her go, but I know I must.

Donna, Rhonda and I went shopping last night to find her a dress. When we returned we couldn’t believe how much she had changed. Her breathing was so shallow. I had to get her up from bed and everyone spent time holding her and loving on her.

Today, she has remained about the same until about 8pm. I think now her breathing is different. It is louder than it was. Hospice told me to be prepared for different patterns of breathing. Her intake of milk supplement has now stopped. We are unable to get her to swallow and she just holds the milk in her mouth until we swab it out. Now we are just doing sips of water.

Kaity is resting peacefully, so hopefully I can do the same. I just pray, that if the angels come to take her away tonight that they wake me up so I can say my final goodbye to her. I’m so afraid to sleep…

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Baby Mine
~From the theme song of Disney's Dumbo

Baby mine, don't you cry.
Baby mine, dry your eyes.
Rest your head close to my heart,
Never to part,
Baby of mine.

Little one when you play,
Don't you mind what they say.
Let those eyes sparkle and shine,
Never a tear,
Baby of mine.

If they knew sweet little you
They'd end up loving you too.
All those same people who scold you
What they'd give just for the right to hold you.

From your head down to your toes,
You're not much, goodness knows.
But you're so precious to me,
Sweet as can be,
Baby of mine.

All of those people who scold you,
what they'd give just for the right to hold you.

From your head down to your toes
You're not much, goodness knows.
But you're so precious to me,
Sweet as can be,
Baby of mine.

Welcome to my journal. This web-site will be used to talk about my daughter and the feelings I currently have as a grieving Mother. I had hoped to write a page a day starting this week and continue until all of my thoughts were out in the open.

I learned that my brother and his family might be coming home from New York to visit with us. If for some reason there is a pause for a few days, I will return to my journal as soon as I can.

I’m currently reading a book called “Good Grief” written by Granger E. Westberg. The chapters of his book are as follows:

Stage One – We are in a State of Shock
Stage Two – We Express Emotion
Stage Three – We Feel Depressed and Very Lonely
Stage Four – We May Experience Physical Symptoms of Distress
Stage Five – We May Become Panicky
Stage Six – We Feel a Sense of Guilt about the Loss
Stage Seven – We are Filled with Anger and Resentment
Stage Eight – We Resist Returning
Stage Nine – Gradually Hope Comes Through
Stage Ten – We Struggle to Affirm Reality

I read this little book and I realized that many of the "steps" that the writer is expressing, I’ve already been through. I feel as if I have done nothing but grieve for many years. Shock, depression, loneliness, physical illnesses, anger, resentment and fear…I’ve done all of these things.

As my memoirs go on, I will strongly touch on Chapter Ten, which is where I feel I am at right now. The author made some very strong points that made my feelings more understandable.

I’ve spent the last week asking myself, “Why do you feel this way? Why aren’t you huddled in a corner somewhere? Shouldn’t you be hiding from life and wallowing in self pity? You have just lost your baby, yet you feel peace of mind?”

I think this book, along with my strong faith in God, and the gift I was given when Kaity died, will help shed light on my feelings. I have been huddled for many years. I have wallowed, I have cried, I have been scared, and at times I felt I could not possibly get out of bed and face another day.

But I did get up. I prayed for strength. I prayed for a stronger faith. I prayed for peace when my daughter died and I prayed that I would know that there was a heaven and that she is now there.

Have all of my prayers been answered?

Many of my prayers have been answered and I will continue to pray that my grieving mind will not try to scientifically prove my faith wrong.

Wednesday, August 18, 2004 10:34 PM CDT

Quoted from Mike, from Kaity’s Guestbook entry:

“Your journey has been long and the peace you feel does not need to be explained or argued, only appreciated.”

I always try to take a quiet moment before I sit down at this journal. Tonight I asked myself, what are you going to write? What can you say to people that will help them understand the peace you are feeling? When I read Mike’s guestbook entry, it helped me tremendously because I suddenly realized that someone else also knows my peace and it felt good to know that I wasn’t alone.

MPS is a war zone. Kaity, along with her family fought many battles. Sometimes we would find ourselves resting in the trenches. Huddled like exhausted soldiers we would wait for the next strike. Sometimes the next strike would take years, other times the battles came quicker and were excruciatingly hard to conquer.

In May of this 2004, Kaity fought her biggest battle with MPS. She was exhausted but she found the will power to survive May, followed by the strength to recuperate once again in June. By the end of July her respite was soon over and once again she faced another battle.

Although her parents fought along with her, we felt different in July. We knew she was too tired to fight one last time. She grew weaker towards the end of the month and when August reared its ugly head we knew she could do no more. There was no fight left in her. She spoke to us with her gestures. Her eyes and facial expressions would tell us, “please don’t put another bite of my food in my mouth.”

As parents we were stronger and forced her to fight the battle even though she no longer wished to fight. We made her eat. We made her get up in the morning. Towards the first of August we had to realize no amount of force was going to help her this time. We held her hand through May, then into June and July. For some reason we felt this would be an ever lasting cycle, get sick…get better, get sick…get better. In August we had to realize that all wars come to an end.

On the Friday before Kaity died (August 6th) I knew she only had a few days left. I knew it with all of my heart that we would not win this time. I tried to convince my husband that Kaity would not live through the weekend. He replied, “She’s done this before…she will be okay!” But I knew he was wrong.

I called my family in to be with me that night. I had resorted to feeding Kaity with a syringe because I could no longer get her to drink from a cup. The last meal she ate was Thursday night. I tried to put food in her mouth and beg her to swallow it, but she would not. The syringe seemed to be my last bit of ammunition for this battle. If she could no longer fight…I would help her!

At some point I realized I had nothing left but prayer. I was very scared. Thirteen years of preparation, but was I really prepared for her to die? Many of my prayers throughout thirteen years of war were the same. “Lord, let me be with her when she dies. Lord, do not let her suffer. Lord, let me know my prayers are heard. Lord, let me know that my child will be in your care. Lord, let me know there is heaven. Lord, give me strength today. Lord, give me peace."


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Today’s Activities and Thoughts:

Brian and I enjoyed another day of shopping and dining. He goes back to work tomorrow and I will be alone. I’ve worked all week preparing myself for this temporary marital separation. I have plenty to do…Brian made sure of that.

He made my flower beds wider so I would have to fill them up. Today, some lovely MPS families made sure I had plenty of new flowers to keep my hands busy.

(Thank you).

The time Brian and I had together this week was heavenly and much needed. We filed Kaity’s life insurance claim today…that was a tough moment for me, but luckily the funeral director did all the hard work. We only had to sign papers.

Today I was bothered by the rain. I didn’t want to think about rain on my Kaity Bug.

“Lord, let me be with her when she dies. Lord, do not let her suffer. Lord, let me know my prayers are heard. Lord, let me know that my child will be in your care. Lord, let me know there is heaven. Lord, give me strength today. Lord, give me peace.”

These prayers over the last 13 years were not said in unison every night, but they were prayed many, many times, depending on the situation and how I was feeling. In the end I prayed that I would be with Kaity when she died. I prayed for strength and I prayed that God would send his angels to wake me if she died in the night. Mostly, I prayed for peace. I prayed that I would know that my baby would be taken care of once she was no longer in my hands.

About two weeks before Kaity died I called a fellow MPS mom who had lost her daughter to Hurler Syndrome. After her daughter died I was not there for her and I needed her to know that I was truly sorry. I told her my fears of Kaity dying. My fears were, number one, I would pull away from my MPS family and no longer want to help those coming after me. Number two, I feared that I would not be able to live without my daughter.

She said something that I keep reminding myself to remember, “Kaity’s death will be what you make of it.”

I believe her statement to be true, but I also have to add that what “I’m making of it,” has a lot to do with the Peace of mind that God has given me. Just as Mike said in Kaity’s Guestbook, do not argue the facts, but appreciate them.

On Friday before Kaity died some of my closest family and friends were with us. I think God sent us the right amount of people, but also the right kind of people when we needed them most.

I have received much spiritual guidance from my best friend Donna. She called me on Friday afternoon and I expressed the need to make funeral arrangements for Kaity. I told her Kaity would not be with much longer.

We hung up the phone and my girlfriend went to the local gas station where she frequently stops for coffee. What happened to her next will connect me and Donna even more spiritually as the weekend goes on.

As she sat and watched the pot and patiently waited for her favorite coffee to brew, The owner of the store approached her and said, “Do you need help selecting a coffee?” Donna replied, “No, I’m just waiting for my favorite brew.” He didn’t stop there and continued by asking, “Is everything okay today?”

Donna is not one to talk to total strangers. She had seen this man before and knew he had recently bought her favorite coffee shack, but she had never spoken to him. Although sharing her life with strangers was not her normal routine, she suddenly felt the need to answer his question. She said, “My girlfriend’s child is nearing her final stages of her disorder and we don’t think she will live much longer. I’m just worried for my friend.”

The man, we now fondly refer to as a messenger, looked at Donna and said, “I’ve been there and it’s beautiful. I didn’t want to come back. I have been to heaven, please do not be afraid. You see, I was in a horrible car crash and I was in a coma for months. I did not want to return but I was made to come back. Please do not be afraid. Heaven is a beautiful place and this little girl will be God’s Angel.”

Anyone could have said those words, but what emotionally impacted Donna was the fact she could not draw away from this man’s eyes when he spoke. She felt peace while she was near him. Donna made the comment that eye contact, while in conversation with anyone, is very difficult for her, but she was drawn to this man’s face. No matter how hard she tried, she could not stop looking at his eyes.

She finally pulled away from him. She said she didn’t remember paying for her coffee. She got in her car and frantically fumbled for her phone. She had to call me and tell me what had happened. Unfortunately, she had to leave me a message because I was not available. Her message was frantic, “Jessica, you are not going to believe what just happened to me. I have to talk to you!”

When she hung the phone up she realized she had run a red light. Her concentration for the day was gone. All she could see were the eyes.

My sister Rebecca and her three children stayed the night with us on the Friday before Kaity died. (August 6th). On Saturday morning we tried to feed Kaity but had no luck. We continued with the syringe and gave her small teaspoons of milk supplement.

At 10am Brian returned home from Evansville. He had not seen Kaity for a week. I could see the fear in his eyes when he saw her, but he still insisted that she would be okay.

At 2pm on Saturday the Hospice nurse stopped in for a visit. She didn’t seem overly concerned nor did she seem to see the drastic changes in Kaity that I saw. She commented that her breathing and vital signs were the same and showed us how to do neck massages to assist her in swallowing. I truly don’t think the nurse was worried about leaving Kaity for the weekend, but I knew differently. I knew when Kaity quit eating it wouldn’t be long.

Rebecca, my niece Josie, and myself, gave Kaity a bath Saturday afternoon. I always lay a little pad at the end of my bed because my room sits just outside the bathroom. I would take her from the tub right to my bed where all her toiletries would be laid out. Each day after her baths she would always gets rubbed down with lotions and she would get her hair towel dried and combed.

This particular day we had to doctor a little open place in the fold of her neck. It had been a problem area for a few months because Kaity would constantly move her head back and forth and continue to open it. I noticed it was bleeding again so my seven year old niece, Josie had to help make it better. She is such a little Mommy. She kept saying, “Awww look…it’s bleeding.”

We put medicine on Kaity’s neck and then Josie put a band-aid on the area. I remember Josie was so patient and careful when she placed the dressing. Josie’s fingers are so small and dainty. She patted the band-aid and said, “There now Kaity Bug.”

As I was putting Kaity’s clothes on her, I noticed how much smaller she was becoming. Weight loss had been an issue for several months. I remember thinking, how can she possibly lose anymore weight? But she did. Her little shirts, that she had worn for years, now fell off of her. We placed Kaity back in her bed and she was held and loved many times throughout the day.

My girlfriend Jennifer sent me a “pocket angel” in the mail sometime in June. You can find them at Hallmark and many other novelty stores. They look like coins. On the back of the angel it said, “Love.” I carried it with me every day. Shortly thereafter, Rhonda gave me one identical to it but it read, “Peace.” I made a comment to my Hospice Pastor, Jim, “Two coins have been better than one because when I hear them jingle I say a prayer!”

On Saturday, I took the pocket angels and placed one in each of Kaity’s hands. Throughout the day she held on to each angel coin. Many times she lost them. One of the coins fell in her diaper. On one occasion we found a coin lying under her. Another time we found it wrapped up in her blanket. All day long her family would gently put them back in her hands and we made sure she held onto them tightly!

As I mentioned in an earlier entry, my girlfriend Donna, Aunt Rhonda and myself left to go shopping for a dress for Kaity. As much as I wanted to have the confidence conveyed by the Hospice nurse and my husband, I simply knew it was time to plan for Kaity’s funeral.

We found a little dress for her that was sleeveless. That bothered us so we bought a little white shawl to cover her arms. The dress was sage green and had small “Barney-colored purple” roses sewn on the front. We were pleased with our purchase and returned home around 10pm on Saturday night.

In the short time we were gone Kaity’s breathing had changed drastically. It was so shallow. Anyone with an MPS child knows how noisy they are when they sleep, but this night I could barely hear her breathing. I insisted on making a pallet on the floor so I could sleep with her. If she was going to die through the night, I had to be there with her.

After Donna, Rhonda and George left around midnight, Brian soon went to bed. I lay beside Kaity on the pallet and I remember being very scared. I was afraid she would die and I would have to watch it alone. I was terrified of her dying. I remember fearing that if I went to sleep, how would I know if she died? I prayed and I prayed, “Please Lord let the angels wake me up before you take her.”

It took me awhile to go to sleep. I remember lying there thinking how sweet she smelled. She had never smelled as sweet as she did in her final days. I remember thinking she smelled like angels. I dozed off sometime in the wee morning hours only to wake up several times to check her and make sure she was still holding her two angels, Love and Peace. I would snuggle back up next to her and doze off once again. Kaity barely moved. I wondered if she was already seeing heaven…