Christmas 2008

Merry Late Christmas to All!
We just got home from a week of Christmas in Kansas. We made the 24 hour drive to see Ryan's family in Ashland, KS. It was such a nice time. I was really worried that Christmas this year would be sad and hard, but it was a very nice time. Griffin really enjoyed the season first with my parents in Valdosta. We stopped in and opened presents with them, and had birthday cake with Mom. Her birthday was Christmas day. Happy Birthday again Mom. We love you. We spent the night with them and then drove out to the cemetery in Valdosta to take Jack a Christmas tree and tell him how much we love him. Then we were off for our drive. We drove about16 hours. Stopping some and eating or shopping. Then we made it to Ryan's parents and surprised his Mom. We came out a few days earlier then she thought. It was worth it to see the surprise on her face. Spent time with family and friends.

One Christmas Eve we went to a candle light service at the Christian Church in Ashland. It was absolutely beautiful. It is just what I needed to settle my soul and mind and help me focus on the true meaning of the season. As I sat there in the candlelight darkness listening to story of Baby Jesus' birth I was brought to tears thinking of the birth of my own son, Jack. I love the part of the scripture in Luke 2:19 when the shepherds and wise men were coming to visit them and see the new baby that "Mary treasured up all these things and pondered them in her heart." Like any mom you try to let every moment of your newborn child just wash over you and settle in so that you never forget it. That is how I was with Jack. I treasured up the way he smelled and cried, and the feel of his warm body and the sweet sounds he made. I will never forget these things and I will always ponder them in my heart.

We had a beautiful Christmas day and enjoyed opening gifts with my in laws and both Ryan's sister and their boyfriends, and Aunt Kathy, Uncle Steven, and Papaw. It was a very good time. Then we travelled 24 hours back to Valdosta. When we got to Mom and Dad's we dropped Griffin off and Ryan and I headed back to spend some time at Jack's grave. Ryan and I sat down and talked about the special things that Jack meant to both of us. We started off Crying and ending with smiles at the joy of our sweet Baby Jack. While we were talking I looked up in the sky at a huge white fluffy cloud, and a hole the shape of a perfect heart appeared in the cloud. I told Ryan to look and we both looked up for just a few moments and then the heart just drifted away. Ryan said , "We LOVE you too Jack!" And we both felt so much peace that Jack is happy and in a beautiful place. Then we thanked God for the beautiful gift he shared with us, and we came home. I am leaving you with a poem Ryan's Aunt Kathy found and gave us this year on Christmas Eve:

I'm Spending Christmas

With Jesus Christ This Year

"I see the countless Christmas Trees, around the world below,

With tiny lights like heaven's stars reflecting on the snow.

The sight is so spectacular, please wipe away that tear,

For I'm spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear,

But the sounds of music can't compare with the Christmas choir up here.

I have no words to tell you the joy their voices bring,

for it is beyond description to hear an angel sing.

I can't tell you of the splendor or the peace here in this place.

Can you just imagine Christmas with our Savior, face to face?

I'll ask him to lighten your spirit as I tell him of your love.

So then pray for one another as you lift your eyes above.

Please let your hearts be joyful, and let your spirit sing,

for I'm spending Christmas in heaven, and I'm walking with our King!"

Merry Christmas Baby Jack, and to all our family, friends, and love ones.

Festival of Lights 5K

Last night we did the big race. It was so much fun. Mom and Dad came into to Jax. and entered the race too. Other racers were Me, Missy, Janine, Ryan (after playing 4 softball games in a tournament, which they won. CONGARTS Ryno!! I love you), Griffin, Jason, Melanie, Allison, Jeff, Carson, Ken and Katherine Mick. We took our time and took pictures along the way and enjoyed the lights. There were over 2,000 people in this race. All the money went to "Children's Miracle Network". I really enjoyed being with everyone. Every contestant in the race wore Jingle Bells on their shoes. Me, Janine, Missy, and Griffin wore our shirts we decorated in memory of Baby Jack. We love you Bubby! We hope to do more races in the future. This one will be a Christmas tradition.

Thinking of Jack

It is so hard to try feeling normal right now. Some days I do okay, and then some I just want to jump out of my skin. The anxiety of not being able to hold my son is more than I can bear. I just sit in his room and try to feel him. Sometimes it is comforting and sometimes it is frustrating because you can't feel anything. We have his slideshow of pictures that I watch and some video tape of him eating his applesauce and rice cereal.
I am so thankful that Griffin, Ryan, and I got to do a lot of the things we talked to Griffin early on in my pregnancy. She got to bathe him, push him in a stoller, help change diapers, and finally feed him. For the 5 months we had him, it was just beautiful. It was hard because we never knew from day to day what could happen, but that forced us to live each day to the fullest we possibley could with Jack.
We squeezed in a lot of fun in a short amount of time. If you did not get to go to the funerel here in Jacksonville I'll list a few of the things Jack got to do( our friend Eddie Phillips "my elder" did a beautiful job sharing at the service the list below of what all we were able to do with Baby Jack):

• He rode in our boat
• went to Wilson's tee-ball game
• went to Olive Garden
• went to his own baby shower at Missy's house
• he went to Griffin's pre-school pumpkin party
• he went to church
• he went to his PedsCare Halloween party
• he went to my school where I taught ; Mandarin Oaks Elementary
• He went to Mrs. Rita's house
• He sat in Santa's lap with his Big Sister
• He smiled at us and laughed at his sissy, Winnie, and Wilson while taking Halloween pics.
• he went with us to Mandarin park several times and we feed the fish

We made sure that this little boy got to experience some wonderful things his short time here on Earth. I am so thankful to God that we got to share that with him, and that God shared him with us. Oh how I wish for more time! One day we will spend eternity together.

When Jack passed away Ryan wanted to make sure we dressed him in play cloths. He wore his soft overalls so that he would be ready to play when he got to heaven. We picture him fishing with his great grandpapas. And I know he gets rocked to sleep each night by his Granny, Nana, and Mamaw.

That is all for tonight. Hope to post pictures very soon.

Racing for Jack

This Sunday the 7th me, Janine, Missy, Allison, and several friends from church are doing a 3 mile race called "The Festival of Lights" in downtown Jacksonville area. It is actually in an area called San Marco. It should be really fun. The race is at night and everyone wears Jingle Bells on their shoes and everything is decorated for Christmas. Janine came over tonight and we painted T-shirts in memory of Jack. They say Merry Christmas Jack 2008. We Love you! Griffin even decorated one for her and "Bubby". That is what she calls Jack. Anyway the race is for the Children's Miracle Network, and me and Janine decided it would be a great way to honor Jack and keep his memory with us through the holidays. I will post pictures next week of us at the race. I hope you all are having wonderful holidays and enjoying your family and loved ones.
Sincerely, Amanda

"Silent night! Holy night! All is calm, all is bright. Sleep in Heavenly peace!"
Baby Jack,
I know you are feeling so much calm and so much peace now. I miss you so much it hurts, but I will see you again some day.
Goodnight sweet Jack. I love you Baby!!!! XOXOXO Your Mommy

At home

Ryan, Griffin, and I have been spending the last couple of days at home just trying to figure out how to live normally. (What ever normal is!) It is quiet, all of us are trying to adjust to life without Jack. Even Griffin can tell a major change has occured. She has a few questions everyday, and we have just tried to answer them as honestly and as much on her level as we can. She asks where Jack is, and I ask her where does she think he is. She said she did not know. I told her in Heaven and in our hearts. She always tells me that Jesus is in our hearts so she asked if Jack was in our hearts with Jesus. We both smiled about that. Then she wanted to know if Jack and Jesus were in Daddy's heart, grandmothers, nanas, her papa, and her second papa, and her two aunts (Ryan's sisters, Kristal and Renee), and aunt Sadie(My sister Sarah). And she seemed happy with that. She says she misses Jack and wishes he could come home. I told her me and Daddy missed him very much and wished the same thing.

We got Christmas pictures today of Jack and Griff sitting in Santa's lap. On Nov. 7th we took them both to a prof. photographer who volunteered through the PedsCare program, and he donated Christmas pics for the families of kids that are sick or have special needs in the PedsCare program. It is a memory and a picture I will always treasure for many years to come. It may hang year round in our home. I will try to post one of the pics very soon.

I still don't quite know what to do with myself. Each night, after Griffin goes to bed, I sit in Jack's nursery and read or just straighten up. I unfold and refold some of his cloths, look at pictures, just touch some of his things, just trying to let his memories sink in. It is so frustrating how fast things change. I try to find his smell on his cloths or blankets, and I can't really find it. I makes me cry and it makes me mad that I can't hang on to those things. It is like everything I try to hold on to slips right out of my hands.

The lyrics to the following song are "Broken" By Lifehouse. It kind of sums up how I'm feeling right now. It is very long so don't feel like you have to read this extremely long blog. It is just on my heart right now:

"Broken"
The broken clock is a comfort, it helps me sleep tonight
Maybe it can stop tomorrow from stealing all my time
I am here still waiting though i still have my doubts
I am damaged at best, like you've already figured out
I'm falling apart, I'm barely breathing
With a broken heart that's still beating
In the pain, there is healingIn your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' onI'm barely holdin' on to you
The broken locks were a warning you got inside my head
I tried my best to be guarded, I'm an open book instead
I still see your reflection inside of my eyes
That are looking for a purpose, they're still looking for life
I'm falling apart, I'm barely breathingwith a broken heart that's still beating
In the pain (in the pain), is there healingIn your name (in your name) I find meaning
So I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin')I'm barely holdin' on to you
I'm hangin' on another dayJust to see what you throw my way
And I'm hanging on to the words you sayYou said that I will be OK
The broken lights on the freeway left me here alone
I may have lost my way now, haven't forgotten my way home
I'm falling apart, I'm barely breathingwith a broken heart that's still beating
In the pain(In the pain) there is healingIn your name I find meaning
So I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin'),I'm barely holdin' on to you I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin'), I'm holdin' on (I'm still holdin'),I'm barely holdin' on to you

Mommy loves you Baby Jack!

Good Bye Sweet Baby

Most of you have heard now that my sweet baby went to heaven on Wednesday, November 12, 2008. The days have been crazy and even with all the company and all the busyness of planning, hugging, and running around I still feel very lonely without my sweet baby in my arms. I had my Jack with me for 14 months. That was my pregnancy and the 5 months and 2 days of his life. The journey was hard, but worth every step of the way to love that little boy. It was a beautiful experience being his Mommy. He will always be my baby, and one day I will get to hold him again in Heaven. I just have to trust that loved ones that went before me are there making him feel right at home.

We had Jack's funereal on Sat. at Argyle Church in Jacksonville and then a service in Valdosta where he is buried next to my Papa and Granny Fiveash. I will write more in the future on how special the day turned out and all the meaningful events that lead up to helping plan the funereal. Right now my eyes are dry and swollen, and my heart is too weary to continue writing so I will leave you with his obituary. Please continue to pray for me, Ryan, and Griffin. With love, Amanda

Jack Ryan Lee, 5 months and 2 days old was born on June 10, 2008, in Jacksonville, Fla. Our sweet baby boy passed away peacefully in his home on Nov. 12, 2008. Special thanks to all whom prayed for him. Jack was our little fighter whom touched the lives of many.Jack has left behind to cherish his memory, his devoted parents who loved him more than words can say, John “Ryan” and Amanda Lee; his big sister, Griffin, all of Jacksonville, Fla.; grandparents, Graham and Diane Fiveash of Valdosta, John and Kristi Lee of Ashland, Kan.; great-grandparents, Clara Lee, Junior Elrod, aunts, Sarah Fiveash of Valdosta, Kristal Lee and Renee Lee, both of Ashland, Kan.; his treasured cousins and the rest of his beloved family. A celebration of his Life will be held at 11 a.m., today, Nov. 15, 2008, at the Argyle Church of Christ, 7310 Collins Road, Jacksonville, Fla., 32244. Graveside services will be held at 3 p.m. today in Riverview Memorial Gardens in Valdosta. In lieu of flowers, memorial contributions may be made to Community Hospice PedsCare, 4266 Sunbeam Road, Jacksonville, FL 32257. Condolences to the family may be conveyed online at www.mclanefuneralservices.com. — Carson McLane Funeral Home

Support Group Meeting

Hello friends.
First of all Jack GAINED weight this week. Tomorrow he will be 4 months old....WOW. Happy 4 months Baby boy!!!! He currently weighs 6 pounds and 11 oz. HE had lost down from 6 and 14 to 6 and 8. Sooooo...hopefully we will start climbing the charts again. I know, I know...so tiny. I always tell him, you could sooo still be in my tummy right now! We have friends and family having babies who already have a good 2-3 pounds on him. We celebrate every ounce.

As I look over what I have written I see that I usually write on my good days. Everything sounds very sweet, which is good, because there is a lot sweet that I get to feel and enjoy. I do have my bad days, where it is only God dragging me out of bed to keep it going.
The Peds Care program that Jack is in provides so many services like the nurse, the at home doctor visits, a counselor (for me, Ryan, and Griff), and even a Chaplin who comes to pray and she does Bible stories with Griffin. This is so special to Griffin, she loves Mrs. Sharon and the time they have for their special story. Griffin likes for that to be her special time. She doesn't want me to listen to the story, or what she talks about. I get to hear it anyway.. because Griffin has recently started talking REALLY, REALLY loud. She sings loud, does everything loud, she even BURPS loud. (She did this at a church lunch this past Sunday.

One of the things they offer is support group for parents of kids with special needs. I wanted to go, but did not want to go, because I did not want to give in to the fact that my baby has "special needs". I'm supposed to go to regular "Mommy and Me" activities. Which I am going to do also because I have a great group of moms at church who get together. Anyway I cried all the way to the meeting and throughout most of the meeting. We all think what we are going through is sad, but you just have NO idea until you get around people who have been living this for years. There were moms who have teenagers who are just trying to help their kids get through school as normal as possible. There is one mom whose husband is active duty and her child is facing her 30th, (that is right thirty) surgery. She does this all without any help. And looking around the group I found that most of the mom's were like me. They had one perfectly healthy baby and had no idea anything would ever happen to them like this. And I was ANGRY listening to every story. I kept asking God why, this is not fair, this is too much to ask ANYONE to do. Then it came to an older lady. She started sharing her story. She had 3 grown children, and she and her husband adopted a son, at 2 years old who was blind and had cancer. Of course that opened the flood gates. I still haven't stopped crying. What a beautiful hear t and giving spirit. God blessed her with healthy children of her own, and she was willing and able to take on a little one who is not considered perfect by the world's standards. And watching each mother as she talked even through the hardships she still spoke of her child with such PRIDE and compassion. Each of wish we could take the hurt from our kids and from ourselves, but there is nowhere on earth we could put that hurt down except for on God. And we talked about how God is big enough to handle our anger, just like when our kids get made at us for not giving them their way. I am still trying to swallow all the hurt that was in that room, but the love that shined through was encouraging. I was able to take time to meet some of the other Mom's kids and it was hard and it was sad at first, but if you push on through that feeling of not knowing what to do, you end up blessed for seeing the kids for who they are inside. When I look in Jack's eyes I see his fighting spirit, and the precious PERFECT soul that God gave him. Our bodies are just shells that hold the true beauty.
Please think about when you see a family with kids with physical problems it is okay to be uncomfortable. No one expects you to be! I was totally uncomfortable today. If you don't know what to say that is okay, just say a little prayer for them to find peace as they go about their day. And if you are comfortable enough to speak, know that they parents are more than likely just as nervous (if not more) as you are. But they would love just a kind word or a smile. We took Jack and Griffin to the circus a few weeks ago. WE loaded Jack up with his feeding tube and everything and went and had ourselves a fun family outing. It was so scary. This man and his son were standing in front of us in line and he turned and looked at us and said, "Your son just radiates with beauty." I felt a warmth wash over me, and for the first time in a long time I just relaxed. That was perfectly said. He saw Jack's spirit, and that described Jack perfectly. I thank God for that man and his willingness to say such kind words. Please know I am not trying to feel sorry for myself. I am very blessed and thankful to God! I know that everyone has something that they struggle with. Life on Earth is not perfect. Sometimes its great, sometimes not so great. But if it were perfect then we would not look forward to going to Heaven.

I wanted to take a quick second to mention a few names of folks from Valdosta that Mom and Dad tell me that ask about us a lot. Thank you to Mr. Garner (who shares Jack's same birthday), Ginny, and Deana. Also to my Dad's prayer group that meets every Tues. morning. He shares with me after each time the beautiful heartfelt prayers that you say for us and Jack. Thank you all at Central Avenue Church of Christ, as Grace Chapel, the churches in Kansas, and our home church, Argyle for you prayers, meals, baby gifts, cards, and phone calls. I am still working on thank you notes. : )