Monday, November 22, 2004 8:54 AM CST

Happy 1st Thanksgiving in Heaven Baby Girl!! May you feast on Hershey Kisses and Kit Kat Bars and have gallons of milk to wash it all down! Yummy milk!!! Your favorite!!! I love you and I miss you…~Mommy


I have felt like a hermit since Brian left for Philly. My energy level seems to be returning little by little, but I haven’t felt like doing much at all. I think it is this weather! I can’t remember the last time I saw the sun! All I want to do is curl up with my book and wait for the rain to stop. I was super busy this weekend which was a welcomed change to the slow week I had.

I haven’t talked much about the upcoming MPS Conference at Disney World in Orlando, but yesterday the staff on the forum and I started making plans for the party we are having on Saturday afternoon, (December 18th at 2:30). I was already excited and now it’s even worse! This will be the first time many of the members on the forum are given the opportunity to meet face to face. We even have our own forum T-shirts. I hope everyone who attends will have a wonderful time. I’m sure our 3 ½ hour party will go by way too quick.

If you have not been to the MPS forum, I strongly urge you to do so. The support we receive is wonderful.
Go to this site and click the link that says: Forum. We would love to have you there!

The MPS conference is being held December 16th-19th in Orlando and we will be staying on the Disney resort at the Contemporary Hotel. Brian’s sister Rhonda and her husband George were able to get airline tickets so we can all fly down together! We all leave on December 15th. As soon as we arrive we are going to Epcot. As for the rest of the week we haven’t made definite plans, other than the “forum get-together” on Saturday. We are very excited that so many MPS families will be in attendance at the conference and are really looking forward to meeting so many new people. See you in Florida!

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Dearest Kaity,
I miss you the most at nighttime. When I try to close my eyes I have horrible visions and I keep praying that those visions will go away and be replaced with happier times. You live in my heart and soul on a daily basis. I live each day to keep your memory alive, but when I try to close my eyes at night, my mind keeps winning the battle and placing the wrong images in my head. I don’t want them anymore. I want to remember you when you were happy and not so sick. If you can hear me angel Kaity, bless this home with peace and love.

I hope you have the best ever Thanksgiving in heaven baby.
I love you and miss you,
~Mommy

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Please keep the following people in your thoughts and prayers this holiday week. Perhaps you can even drop by their sites if you have a few moments.

The Holbert Family: Moriah’s headstone was set this past week which was a very difficult time for their family. Moriah’s Web-site

Evline’s family: She just passed away November 12th from Hurler Syndrome (MPS Type 1), following a bone marrow transplant. Her web-site is here: Evline’s Page

The Elfrid family is having a very difficult time with Lindsey, (MPS III- Sanfilippo Syndrome). She had surgery and then one of her lines became infected and she is very ill. To visit Lindsey’s site, Click Here

Jonathan Summers, (Hurler Syndrome - MPS Type 1), continues with his struggle after a bone marrow transplant at St. Jude’s. The family fears that he may have to undergo another transplant since the first one is not taking. They have been away from their home and family for seven months and are very tired. To visit Jonathan, Click Here

Thank you all for visiting and have a safe and Happy Thanksgiving!
~Jessica

I think I finally found a few answers to the questions I was having concerning Kaitlynn. Pour yourself a cup of tea because this is going to be a long one.

I remember the day after Kaity died I was in our bedroom trying to rest. I could do nothing but cry. I was crying because I was trying to make sense of what happened to me and to Kaitlynn when she took her final leap to heaven. My husband came in and I asked him what he saw the moment Kaity died. I felt I needed confirmation from someone who was there. He told me that he could see nothing but Kaitlynn’s eyes, which was also my only focus at the time. He told me, “I hope that you find the answers you need that will bring you comfort in dealing with what happened.”

Words that strong were unlike my husband but I held onto the hope that one day I would find my answers. Brian knew that I was struggling with Kaity’s last moments and three months later, I’m still struggling.

This week of Thanksgiving was very difficult for me. I was fooling myself by thinking that I could let Kaitlynn go and be joyful that she is now in heaven. Don’t get me wrong, I am sincerely joyful for her, but I have a huge void in my life that I fear will never be filled. I grieve because I miss my daughter, and I have many unanswered questions. For thirteen years I cared for her and now she is gone. I feel lost without her and I feel as if my purpose is diminishing.

One of my biggest questions for Kaity has been, “Were you in pain when you died?”

My second biggest questions have been, “Where are you now? Who is taking care of you? I’m sure you are very happy, but I’m worried about this whole "after life business." Is it just an attempt on my part to console myself?”

After Kaitlynn died I had a very difficult time crying, especially at the funeral home. There is no way of putting into words the things I felt and saw the moment she died. There is no way that anyone could possibly understand…

Or so I thought…

Last Tuesday I attended another bereavement meeting with Hospice. I was early so I decided to check out the library shelf and see if any of the books could help me. I told my counselor that I was not finding what I needed in the books that I was reading. I so desperately needed answers, and I wasn’t finding my answers written anywhere!

After rummaging through the books for several minutes, I found a book on the shelf that had a butterfly on the front cover. It was entitled, “Hello from Heaven.” I flipped through the pages briefly and read the back cover…like most people do when they are contemplating reading a book. I noticed that it had stories compiled by witnesses who had similar feelings, signs and visions from their loved ones. Hmmm…maybe this book is what I need, so I took it home with me.

It sat on my desk throughout the Thanksgiving holiday. What a shame I didn’t read it before and perhaps my week would not have been so gloomy! Saturday I had nothing planned so I cleaned my house, lit a candle, and curled up in my brand new recliner that my husband gave me. Our double recliners are in Kaity’s room which has now been converted to a T.V./Resting/Reclining/Comfy Zone area. I love this room because I feel like I am with Kaity when I am there.

I read the book all day Saturday, pausing only to eat! I was so engrossed in it that I couldn’t put it down…which happens a lot when I find a good book. I cried from the moment I picked it up until the moment I read the last page on Sunday. I could relate to every single story because I knew exactly what each story teller had either felt or saw.

Many people who are touched by an experience but then later have apprehension.  They often fell what has happened to them cannot possibly be true. Just like me, many will brush it off as delusions or grief. I felt much like this because I could not comprehend everything that had happened, and things that are still happening.

I told one of my Hospice workers about the rainbow dream that I had shortly after Kaity died. I also told him that Kaitlynn’s Grandmother had a similar dream. He said, “I believe a lot of things happen to people because of their grief. They want to feel the deceased loved one so much, that often things will happen to them.”

His words were another affirmation that my grief was the cause for things that were happening. His choice of words reassured the doubts that I already had. What I need to remember is that my true grief had not yet started. Everything that happened to me was right after Kaity died, which at the time was consumed with a strong sense of peace. I have not really felt my grief until the “missing her” stages came around a few weeks ago.

So what was it that I felt and saw when Kaity died? What were all the signs that happened days later? Since August 9, 2004, I’ve been asking myself the exact same questions. I've tried my hardest to brush what I felt away. I've tried to convince myself that they were nothing more than feelings of a bereaving parent, until I read the book I brought home from the Hospice meeting.

You know what? I no longer believe in coincidences. It was meant for me to find that book. It was meant for me to read it. When I first picked it up, I asked my Hospice counselor, “Do you know anything about this book? It doesn’t look like anyone has ever read it.”

You can always tell when a book has been read a lot. The cover becomes creased, bent and the pages are sometimes folded, but not this book. When I opened the pages, the book smelled old like it had been sitting and wasting for far too long. The counselor told me that a friend of hers had recommended the book, but she never got around to reading it. I hesitated briefly and almost put it back, but something told me to take it home.

The stories compiled in “Hello from Heaven” meant a great deal to me. The various authors showed me that I’m not alone in what I felt and what I have seen. It was a huge relief, almost like finding the MPS Society and all the wonderful family members who are in my life. I suddenly felt that I was not alone, I was not crazy and the things that have happened to me have also happened to others.

Remember in my journal about the dream I had? I dream a lot, but most of my dreams are often hard to understand and are often results of whatever is bothering me at the time, but the dream about Kaity was different. I wanted to shout to the entire world what I had seen and felt, but once more I could not express the feelings that overcame me that night. No one can express it in words. It’s like breaking a bone in your body and trying to explain to someone the excruciating pain. You just can’t do it.

In my journal (copied from the history page from August 11th, two days after Kaity died) I described the rainbow over the funeral home and the dreams that both Kaity’s Grandmother and I had:

…Many visitors came and went and before long it was almost dark. My sister Rebecca interrupted my conversation with an MPS parent. She wanted us to come outside and see the rainbow that was over top the funeral home! I said, “Okay…in a minute”, and kept on talking. A few minutes later Rebecca came back saying we HAD to see this rainbow. I grabbed my fellow MPS mom by the hand and said, “Come on…let’s see what the turmoil is about.”

By the time we arrived outside we found all the Wellman’s looking at the sky but unfortunately we were too late to view the rainbow. It had already faded. They were all talking about it being the most beautiful rainbow they had ever seen! I was happy my family was able to view the beauty but I didn’t feel I had missed anything. I had already seen my rainbow the day Kaity died in my arms.

That night, Brian’s mom said she had a dream. She saw a rainbow of colors coming towards her and they slammed into her. She awoke and was so overwhelmed that she could not return to sleep.

Two week later, I had a similar dream. I wrote:

(August 25th) at 1:30am I had a similar dream. I cannot remember the colors exactly but I remember that there were colors. They came at me like a gust of wind and it took my breath away. I sat straight up in bed and was smiling from ear to ear. I was so joyous and said to myself, “Kaity…Kaity is here!!” I knew beyond a doubt she had come to see me. I felt it!

That night was no ordinary dream. I knew that Kaitlynn had come to see me. I knew it then, and I know it now. It was absolutely breathtaking. It was so brief, but when I awoke, I knew it was her and I was so very happy.

I am a rainbow watcher…I always have been. After a rain you can always tell by the lighting if there is a rainbow or not. Whenever I see this special kind of glow or lighting I always run to see if there is a rainbow. I have photographed several rainbows; one was in Hawaii on our honeymoon! They are easy to spot if you learn what kind of light to look for. What is a mystery to me about Kaitlynn’s “funeral home rainbow” is the fact there had been no rain, the fact that it was directly over the funeral home, and the fact that so many family members said it was the most beautiful rainbow they had ever seen.

From the book, Hello from Heaven, “A rainbow is one of mankind’s oldest symbols of hope and eternal life.”

At the beginning of each chapter of the book, there are quotes by famous people such as Elisabeth Kubler-Ross, Harold Kushner, Helen Keller and many others. I was so excited when I reached chapter 14 and read the title, “Butterflies and Rainbows: Symbolic After Death Communications.”

Neither the stories, nor the title had a great affect on me. It was the quote at the top that had me crying my eyes out. It read:

Ask, and it shall be given you;
Seek, and ye shall find;
Knock, and it shall be opened unto you.
~Jesus of Nazareth

Everything I read in the book, impacted me, but nothing like this little bit of scripture. I’ve read it before, many times, but I had never heard it like I did at that moment. I cried tears of joy and tears of release.

This whole time I’ve been asking and seeking answers, but I wouldn’t let the door open to reveal what I had been given. I was afraid to knock. I was afraid to believe that my experiences were truly signs and wonderful gifts from above. This weekend a light came on for me. I finally realized, with the help of this book, I had already been given answers and plenty of them; all I had to do was open the door (my heart) and let them in.

Many other things have happened in the last few months that I have not written about. Because of my disbelief and fear that others may think I’m ready for the nut house, I have not shared my feelings. The only person I talk to is my best friend Donna. She is very open and receptive of what is happening to me spiritually. She believes in God, she believes in angels and she believes that there is life after death. Her father, who died years ago, once woke her up from a sound sleep.

I truly believe that Kaitlynn is trying to let me know, beyond a shadow of a doubt, that she is very happy. She knows that I am worried and she knows that I am sad. I think Kaitlynn needs to know that I’m okay. All this time I’ve spent worrying about her, but I think she is more worried about me!

Are all my questions answered? Do I no longer have doubts? Well, I know one thing is for sure, the next time I knock at that door, I will be grateful for the signs and messages I am given and not brush them off as “grieving hallucinations.” I will welcome whatever happens next. I truly believe that something else is yet to happen that will erase any questions or doubts from my mind. I have that hope, and right now that hope is very strong within me.

If you have an angel and you feel that they are reaching out to you, I strongly recommend the following book,
“Hello from Heaven-Click here for the link.”

Until next time,
Jessica

Monday, December 6, 2004 1:01 PM CST

~An excerpt from the book: A Time to Grieve by: Carol Staudacher

He has not lived that lives not after Death. ~English Proverb

I want to talk about her all the time, but I don’t want to make others feel sad...

We may want to talk about our loved one frequently; in fact, we may fear that our need to talk is excessive. But talking about a loved one who died is a testament to that person’s life. It is a reflection of all that person offered to us and to others. It signifies that our loved one had a unique personality and character and was a strong influence in our lives, that he or she gave something valuable to us and received from us as well. Talking keeps the person alive in important ways. It confirms that our loved one will be an ongoing part of our lives and the lives of those around us, that he or she came into this world and had an impact, and shall live in our hearts and minds forever.

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I had an overwhelming response to my journal last week. From the bottom of my heart I send my most heartfelt thanks to everyone who has offered support during our grieving process. I would like to thank everyone who signed the guestbook, made comments on the forum, or took time from their busy lives to send me an email. It is always nice to hear from people. Last week’s entry brought a few new people into my life who have also felt the spirit of their loved one. Thank you so much for sharing your lives and your stories. I look forward to hearing from many of you again.

Brian was home all last week and I was so relieved to have his company. I’m often filled with the fear of, “what if something should happen to Brian?” I’ve handled a lot of things, but losing my husband would be catastrophic to me. Hopefully I'll go first and I won't have to worry about it!

I’m looking forward to the New Year, at which time I hope to make a few changes. I’ve been overwhelmed with feelings of guilt because I have been staying home and not ventured out to find a job. I have to stay busy…it’s just who I am! Since Kaity died I have felt useless. My work has continued on the forum and with my fellow MPS families, but I feel like my purpose is gone. I’ve been told not to dwell on what my future will hold, but dwelling on my future is beyond my control.

As many of you know I’ve debated on whether to go back to school or find work. Due to financial reasons, I’ve decided to look for work. Going back to school right now is out of the question. I know you are probably saying…get a student loan! The problem is, the loan has to be paid back and right now we cannot take on another payment. I did however enroll in an on-line writing course. The person instructing the course does not promise I’ll become a writer, but he will guide me in areas that need work, things such as expanding my vocabulary and imagination. I figured anything he could teach me to broaden my mind would be beneficial. I am looking forward to my first lesson!

I wrote a few weeks ago about the Disney Conference. We are now on a countdown! We leave in 9 days and I am so excited! What a Christmas present this will be!

This past week, Brian and I tried to get as much shopping done as possible since we will not be home until December 20th! We also spent a great deal of time decorating the house and Kaity’s grave. This is the first time in many years we have felt joy in putting up a Christmas tree. We played a Christmas tape of mandolin music, lit candles and the house filled up with love and peace as we worked. We are not sure why decorating was so nice this year…but it just felt right!

I decorated Kaity’s room, which is now our retreat to relax and watch television. I put her rocker in the corner with a Christmas blanket and a porcelain angel that is covered with poinsettias and butterflies. Above her rocker is her photo and a candle that we keep lit most of the time. No one has sat in the rocker since Kaity died, except me. Call it a shrine, call it what you want, but decorating her chair has brought a great peace to both me and Brian. Her joyful spirit is constantly with us and will be for years to come!

Kaity's grave looks really nice as well. We made a two foot by four foot Christmas spray that turned out to be so pretty. It is full of evergreens, gold beads, poinsettias, ribbons, pine cones, angels and butterflies! We also filled her basket that hangs on a shepherd hook, with Christmas flowers and ribbons. Her grave is beautiful and anyone who passes by knows how much she was loved and is missed.

A week ago we received a printout in the mail from the monument company that is making Kaitlynn’s headstone. It was difficult to see our plans in black and white, but I believe her headstone will provide closure for us. We had to order her stone from over seas and it has finally arrived. It will probably take another 5-6 weeks for the engraving to be complete. We could have selected a stone that was already in stock, but I had my heart set on a stone that was only available over seas and due to the size we wanted, we had to place an order. (We ordered one large stone that will accommodate not only Kaity but me and Brian as well). Hopefully when all is said and done it will meet my expectations!

I’ll close for now. I hope everyone had a nice Thanksgiving! I had a very difficult holiday but I think most of it was because Brian was out of town. I knew I should have flown to Philly! Thank God he is going to Florida with me and will also be home through Christmas! He has a job scheduled on December 26th and I’ll be traveling with him on that trip as well. I don’t want to spend New Year’s by myself so I’m looking forward to our time together!

Love and Peace to each of you and once again…thank you for always being here.

Jessica

Tuesday, December 14, 2004 8:06 AM CST

I have been so busy planning the MPS Forum Party in Orlando (taking place this Saturday the 18th), that I totally forgot to write in my journal! I will not be making another update until closer to Christmas.

I read in the local paper (2 weeks in a row) that one of our doctor’s offices was hiring. My girlfriend Donna heard I was looking for work and thought maybe it might be of interest to me, mainly because they are able to pay the amount that I need. Without a formal degree, getting a decent paying job can be hard to do!

I submitted my resume on Monday, and they called the same afternoon! I am scheduled for an interview after I return from Florida. Please keep me in your prayers that this will be a job to get me started back in the working field!

See you sometime around the 21st!

Jessica

Wednesday, March 16, 2005 5:24 PM CST

I scheduled a day off in April so Brian and I can travel to Ann Arbor, Michigan for the ISMRD conference! I’ve only been with my job for three months and I did not want to take a day off, but I didn’t see any other way. Brian said it will take us at least 7-8 hours just in driving time! I managed to get a “long weekend” but I’m sure it still won’t seem like enough!

Brian is so excited about seeing Zach and Ashton. He met them at the Florida conference in December and fell in love. We went to the Bowl-A-Thon last weekend in St. Louis and Brian said, “Zach and Ashton will be there right??” I hated to disappoint him and say, “Not this time!”

We look forward to seeing ALL the kids in April and I’m sure “Donald Duck” will be providing much entertainment.

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This week has been exceptionally emotional for me. A person never knows why or when grief will hit them. There doesn’t have to be a reason…it just comes. I miss Kaity so much but if I were given the option of having her back (if she were still sick) I would say, no. I don’t want to see her like that again. I don’t want to see her die again.

I think the "not knowing where she is now" has been the hardest thing for me to deal with. Not knowing for sure if she is okay. Not knowing where she is at. Not knowing who is caring for her. I’m sure that anyone reading is saying, “Now Jess! She’s in heaven…she’s with Jesus…she’s taking care of all the MPS babies and tending to the gardens!” And I very much want to believe that. I guess I need to know where she is and what she is doing, without one single ounce of doubt!  This is where my faith is supposed to step in. Faith has never been my strong point and so I have to pray for it on a regular basis.

I’m the one who wants to dissect a clock to see what makes it tick. There is only minimal faith required with a clock. You wind it up and it works! There’s only minimal faith in air too! When you get up in the morning you have faith that it will be there for you to breathe. You don’t really think about air…you just assume it will always be hanging around. You can’t see it, yet you trust that it will provide what you need.

What makes God any different than any other sustenance of life? He is there. His angels are there. Heaven is there. I can’t see any of them yet I still believe, but some days my faith dwindles. Sometimes I just want to scream, “Show yourself God! Even on a foggy day, air will do that!”

I trusted God before my daughter died. I prayed that Kaitlynn would have a peaceful death, and she did. I prayed that I would be with my daughter when she left this Earth, and I was. I prayed for peace and joy, and it was given to me. I opened the cage door of MPS and thought to myself, “Be free my little angel!” I watched my daughter fly away and I did it with pride and trust. I had faith that she would be taken care of.

Today, I occasionally question that faith. If I could go back, I fear that I would not be so willing to let God have my daughter. I think I would fight him until the end! Not because I want to see Kaity ill again, but because now I feel as if Kaity is lost…as if I am lost without her. At least when she was here…in my home…I knew she was being cared for. How can I live my entire life not knowing that she is okay? It is sheer agony at times.

I suppose my faith could be compared to the ancient Egyptians who built pyramids. My foundation has been built and I’m on my second or third layer of stones, but I can’t help but look to the sky and wonder if it will ever be finished.

This week I pray for continued building of my faith and I pray to God that I have given my child over to the best babysitter in the universe.

Wherever you are Miss Kaity…I love you and miss you dearly.

~Mommy