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. : )

"My Two Favorite Kiddos"

Griffin loves for me to call her and Jack "My two favorite kiddos". They both are so very special, as any child is to their mother. I like to sit back and watch them or at the end of the day think about the funny and amazing things that they do. Griffin is the spitting image of me when I was little. She is very much 3 going on 13. I have to laugh as I pick up her toys at the arrangement of items and the choices she makes. I find flashlights and jewelry laying around like she is pretending to go on a treasure hunt. She is also very into baby dolls. He favorites are small dolls from different countries around the world. They are about three inches tall and dressed in traditional clothing from their countries. She loves them, and I do too. They are beautiful from light hair and skin from Sweden to very dark hair and skin from Jamaica. I love how she pairs them up. She also has a few Barbies. She has a Hannah Montana Barbie, a blond Barbie in a swim suit, a Halloween Barbie in a beautiful witch costume, and two of my old Barbies. One has red hair, and one is the old tropical Barbie with LONG black hair and sun tanned skin. The thing that makes me smile is that the Barbies are the mommy's and the little dolls are the children. When I play with her, without even thinking, I try to match them up so they look alike like Mom and daughter. But she has no discrimination of color which is a beautiful lesson she has reminded me of. She will have the mommies matched with the baby how ever she feels will make a beautiful family. Her two favorite play names are Holly and Polly. Whenever we play she wants to be called Holly and me to be called Polly. I have NO idea where these came from. I remember from my childhood my pretend name was Nicole Anderson. I have no idea where that came from to this day either. Griffin is just a joy to watch as she is figuring out how to make her personality come out in everything she does, from picking out her own cloths to wearing my high heels around the house. Jack's nurse, Janine, comes every week and she is always dressed very pretty, and Griffin ADORES her. When Janine takes off her shoes, Griffin goes to them and wears them around the house until it is time for Janine to leave. Griffin is very good at walking in heels. I'm afraid my little girl is going to have very expensive taste.

Now, my little Jack. Jack has taught me and Ryan both a lesson is perseverance, and fighting without holding back. Fighting in a good way. Jack does not give up. He may have to stop and rest when his little body gets tired and weak, but you just give him a few days or even hours and he has bounced back. When have had some really good days, but some really BAD days when it comes to Jack's health. Most of you know some, I try not to dwell on it or jump on the phone or Internet to share it all. But we have been told SO many times that the end is near for Jack. We were told he'd never make it through pregnancy, he would never survive his birth, we would not survive the NICU, he wouldn't live through the day, the month, etc. At one time Jack was really sick, and we were told if he did not wake up by around midnight that night he would probably not live. Well leave it to Jack to push everything to the limit. That time he woke up at 3:00 AM. He likes to change the rules, he is outside the norm in all that he does. You can already see his personality in his eyes. God bless him, his little body does not allow him to do all that you can see he wants to do. Right now he is on oxygen 24/7. We have tried to take him off with doctors guidance, but we keep coming back to it. He seems to just need that assistance to help relax him. That is one less thing to struggle with, so by all means we are going to provide that for him. I wish I knew what all went on in his head. What does he think of us? What does he want to be when he grows up? I pray to God that he does not hurt. I know his favorite places to be are tucked right up beside his Daddy's chest nestled in his arms and right next to my heartbeat with his hand holding on to the collar of my shirt. We both hold him very differently, but he gets very comfortable with both of us.
There have been a lot of parents who come to me and say that their kids pray for Jack, and it is with the most raw emotion and kindness that they ask God to be with this little guy. Many children at our church, at Griffin's pre-school and even at the private christian school here in Jax, they have Jack on their prayer list. My eyes fill with tears at the beautiful image of Jesus with the children crawling on his lap. These little ones are the ones we need to learn from. Crawling into the lap of Jesus and adoring him, enjoying him, and asking him to protect their friends.

I think my God in Heaven for my children and the lessons they teach me. They teach me to have big dreams, play pretend and enjoy life, look past people's outward appearance, we can all be a family no matter what color, size, or background we have, to fight with every fiber of our being, persevere, live for God's purpose, pray for my friends, love without holding back, and it is good to find a warm soft place to snuggle down into to find rest. Thank you to my "two favorite kiddos".

Moms I Admire

I've been thinking a lot about motherhood, and what makes us the moms that we are. I know we learn a lot from our own Moms, so I admire my mom Diane. She was and still is a very thoughtful person. She takes time on little details to make me and others feel special. One of my favorite things that she does is arranges even the most simple meal in a beautiful way on a plate. She takes time to make the plate look pretty. When me or Sarah were sick when we were growing up she would fix a meal and put it on a tray with a small vase and a flower. Then she would serve us lunch in bed. She took good care of us when we were sick, and she still does the same when she comes to help take care of me after having my babies. Thank you Mom for that. I try to do that now with Griffin and when Jack gets bigger for him too. Of course I admired my Nana and Granny. Nana could make a meal like you would not believe. She had a way of just making it bigger and bigger, so anybody that walked through the door would have plenty to eat. Between all the kids, grand kids, and our friends, she could make a meal stretch. We always called it "miracle food", because ther was plenty to eat, and usually some left over. My favorite memory of my Granny was her soft skin and how she dressed. She almost always wore a dress or a skirt. She also liked wearing pink. I think that is why I love pink so much. She also always kept aprons in her kitchen. She would wear them while she cooked. She always had one for me to wear too. Anytime I cook a big meal, or a special meal, I like to wear an apron just like hers. I even have a little apron that was mine that Griffin wears now. And now I have a another special mom, my Mother in law Kristi. She has such a tender heart for people and for animals. She is not afraid to jump in and get her hands dirty. She helped many of her church members pick up the pieces of their homes after a terrible tornado a few years ago in Kansas. My Mother in law came to see us recently, and mowed our back yard in 90 degree weather, with a push mower. I was so grateful. Thank you for your spirit of hard work and love for others.
Some other very special moms I admire are the ones who persevered through hard pregnancies, lost their babies, and had faith and trust in God to get pregnant again. Thank you so much for your beautiful and humble examples. My heart and prayers go out to Melissa Hicks, Shannon King, Mia Jenkins, and Amber Gross. I know there are many others, these are just the stories that I know personally. I have made it my prayer priority to pray for my pregnant friends, and those who are wanting to get pregnant. Please know that I love you girls and I admire you all.

Bad Week/Good Weekend

Jack is getting stronger everyday. He was weighed today and he is 6 pounds 14 1/2 oz. We are so thankful for the prayers for him. We were able to celebrate some special birthdays this week. Happy 60th to Papa Fiveash! Happy 5th Birthday to Wilson! Happy 18th to John Mark! Happy 22nd to Bart! and Happy 28th to my hottie hubbie, Ryan! I love you guys! Check out picks from the weekend and the visit of family from Kansas. ~ Love, Amanda

Jack Update

Thank you for your prayers and thoughts and the comments you have made on our blog. It is so encouraging. I praise God this morning for another glimmer of hope and the beauty he has created in Jack. About 3:00 this morning I jumped out of bed and ran to Jack's crib. I had a feeling something was going on. When I got there Jack looked at me and I cuddled him up, and for the first time in over 24 hours he began to make sounds, clear his throat, an gave me that sweet little cry. I have never been so happy to hear a baby cry in my whole life. That was my prayer yesterday to hear him cry and know that he was doing better than he looked. After crying his little face pinked back up and he continues to look better and move more than he has in the past few days. Your prayers are so comforting,and I am so thankful that God listens when we call. Mom, Dad, and Sarah are her. And Ryan is picking up his parents and two sisters from the airport. This will be the first time that all the family will be together since Jack was born. I am so glad that we will get to have a good visit and enjoy Jack, and celebrate his strong will and brave heart. I am so proud of him and blessed to be his Mommy.
Love, Amanda

Prayers for Jack

Dear Family and friends. We have had a really hard day. Jack had a bad night last night and has had some choking spells and three seizures that we know of. He is at home with us. We are working with Peds Care a division of Hospice to help us through this very tough time. Jack looks very peaceful at this time, but he is not his usual energetic self. We have a nurse that lives 8 minutes from our house on standby at any moment we need her. We also have a Dr. on call. The doc said the next 24-48 hours would be pretty crucial and Jack would tell us if his body is able to continue the fight. Please pray for his peace and comfort. If he wants to keep fighting then we will keep on going, but if it is too hard for him please pray that he will let us know. We need wisdom and strength right now. There are a lot of hard decisions to be made. God has carried us through the last scary 9 months and we continue to put our faith and trust in him. we love you very much.
Amanda and Ryan

Surviving Hurricane FAY

So far the weather has not been too terrible. Lots of wind and rain. Mom has been here with me helping with Jack and Griffin. Mom and I went to Wal-Mart and Walgreens and stocked up on water, diapers, baby formula, and snacks. Thankfully Jack's oxygen does not require electricity and his feeding pump is battery operated. We have it charging at all time, just in case. If the battery runs out, we know how to use a gravity feed that does not require anything but a syringe and gravity. Man...Ryan and I will have our real life medical degree before too long.
I am thankful that Ryan has a few days off for us to have some family time. We are having a good time together. We just got some mail and our Uncle Jimmy and Aunt Kathy from Montana just sent a special package for Griffin. She tore into the box and found an AMAZING pairs of cowgirl boots. She shouted "Hannah Montana boots!" Then she began singing, "Nobody's perfect. I gotta work it again and again till I get it right." She is stylin' now. Also see picture of Griffin and after getting home from the hospital.

Home From the Hospital

Last Sunday morning we took Jack to the ER. We took him in because he was coughing and chocking a lot on his bottles. Sat. night I noticed he was looking a little blue around his lips and eyes. He didn't seem to struggle, but he just did not look right. When we got to the ER they hooked him up to monitors and saw that his oxygen levels were low and they did an X-Ray and said Jack had an acute case of pneumonia. Jack had to fast for 24 hours with an IV. Then they did a feed/swallow study. That is an X-ray of his throat while taking bottle. It showed that Jack is swallowing some of the milk, and some is going down his windpipes. So we had to put the feeding tube back in. We were in the hospital for 4 days for tests and observations. It was so hard to watch my baby have to have blood drawn, lay in bed with an IV and oxygen. They came and drew a little blood for a blood sugar test every three hours. They pricked his heels, toes, and fingers. I ask God for strength for his little body and for strength for us. I keep think of the Amy Grant song "Breath of Heaven". The words say "Breath of Heaven hold me together, be forever near me. Breath of Heaven lighten my darkness, pour over me your holiness, Breath of Heaven."

Jack's Weight Update

Nurse Janine came today to weigh Jack, and guess what...He is 5 pounds 10 1/2 oz. WOW! This boy is growing. He is so busy growing and eating that he does not sleep very long. I feel like a Zombie Mom. But I am so thankful that he is doing so well. Just a quick update tonight, very sleepy! Oh yeah, Griffin starts her ballet/tap class tomorrow. We are very excited. Will post more pics soon.
Goodnight ;0 (yawning)

Verses that inspire me

Being a parent lets you know how out of your control life can be. Being a Christian parent lets you know how in control God is. During pregnancy and even now these verses help me lean on God and put my trust in him. The past 8 months have been really hard, but many of you sent verses in your cards which really helped me connect to God. Thank you again to all that read this for their support and prayers. A song that came to mind and has stuck with me is "Blessed Assurance". I know God put that song on my heart, because I don't even remember the last time I have heard it. My favorite line: "This is my story, this is my song. Praising my Saviour all the day long." And I do praise God for the mercy he has showed us and the love he has given me and Ryan through our children.

2 Timothy 1:7
"For God hath not given us the spirit of fear, but of POWER and of LOVE, and of a SOUND MIND."

Matthew 11:28-29
"Come to me, all you who are weary and burdened and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you shall find rest for your souls."

Deuteronomy 3:18
"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

Mark 10:27
"With man this is impossible, but not with God; all things are possible with God."

Romans 5:2-5
"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our suffering, because we know that suffering produces perseverance; perseverance produces character, and character produces hope. And HOPE does not disappoint us because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."

When you get the chance read Ephesians 3:14-21. My sweet friend Kristy Cates from Valdosta sent me this verse in a card. It is a little long to type, but the words are so beautiful. I pray this prayer for those that I know and love that are struggling.
If you or someone you know is struggling with a scary pregnancy or just needs someone to pray with please contact me. I had so many beautiful moments praying, even over the phone, with people. I would love to be able to give that back to others. My e-mail: rlee1210@att.net

How to access Lee Family Slide Show

For those that have not seen the slide show of our family pics you can click on Jack Ryan Lee to the right under "Family slide show" or you can type in the website:
1. www.photodex.com/share
2. Then you go to sharing
3. click on browse member
4. type in member name: cameracraft
*These photos were taken one week after Jack was born. He was still in the NICU. The photographers took the pictures there in the hospital for us. Griffin had just met Jack for the first time about 5 minutes before they started snapping pics. This is the most beautiful treasure for me to have of this time in my family's life. I hope you enjoy.

Also please e-mail us at:
rlee1210@att.net

Jack's Progress and update on Griffin

While Jack was in the NICU they did a series of test on his heart, brain, kidneys, hands and feet. Everything checked out and was stable. Jack did not need surgery on his heart, PRAISE GOD. He only need a small amount of oxygen right after he was born. He was under photo therapy for jaundice, and he had to have a feeding tube for a small amount of time. Jack did not need any help to function and do what he needs to do to survive. We were able to leave the hospital so that Jack could come home and grow and thrive in his house surrounded by people who love him VERY much. Since Jack is so little we have met with our pediatrician and genetics doctor once a week since we came home. They check Jack's weight, height, and general functions to make sure his still doing all that he needs to do. They just LOVE Jack and we are all so proud of his progress. He is currently weighing 5 pounds and 6 1/2 oz. And he is 19 1/2 in. long. This is great progress for our little guy. We also have an on call nurse that will come to our house to check Jack's vital signs, weigh him, and just answer any questions that we may have. She is a joy! She loves Jack and Griffin and told us to consider her part of the family. We are so blessed to be surrounded by so many who love and support us. I can't wait for you all to meet Jack. He is a beautiful miracle to our family. We cherish his smiles, baby soft skin,the sweet sounds he makes, and even his cry (we say it sounds like a little lamb). I will keep you updated on his weight gain and progress. Please continue to pray for us and for Jack to continue to grow and prove the doctors wrong!!!
Griffin (the big sister, aka Sissy) is so proud of her brother. She turned 3 on May 12. She enjoys singing to Jack, helping with diaper changes, picking out Jack's outfits for the day, and holding her baby brother. She also enjoys dancing, laughing, and surprisingly playing on the computer. You should see her go! She loves laying Dora games on Noggin.com. Next Wednesday Griffin and her cousin Wynter start a ballet/tap class. Today we bought her tap and ballet shoes, a pink leotard, a black leotard with a beautiful skirt, two pairs of tights, and a super cool ballet bag for her classes. She can't wait to get started. Jack and I will enjoy watching "Griff" and "Wyn" dance and tap all over the place. I'll be posting pictures very soon of Griffin and Jack at home. We love you all and hope you enjoy our BLOG. God Bless you and your families.

Birth of Jack Ryan Lee

On June 10, 2008 I worked at my school all day and my doctors office called to see if I could come in for an early appointment. I was feeling good and my due date was 5 days away. So Ryan was at work and Griffin was at daycare. When I got on the ultra sound table the Dr. said "You have no fluid left, did your water break?" I said "No". They put me in a wheel chair right then and sent me down for an emergency C-Section. Jack was breech, so we had to move fast. I had also just eaten lunch so they were worried about operating. It was crazy. I called Ryan crying and beggin him to get to the hospital ASAP. The I called my cousin Missy. She said don't worry about Griffin, I'll take her to dance class with her. So Griffin did ballet while I gave birth to her baby brother. Ryan showed up in about 10 minutes straight from work. Luckily we had some great friends come to the rescue. Allison and Jeff came with clean cloths for Ryan. My Mom and Dad and sister, Sarah, were then in 2 hours flat. Other good friends came and helped us make phone calls; LK and Monica, and three teacher friends; Jennifer, Lisa, and Natahsa. We found out that Jack was not in distress, so we were able to wait a couple of hours to let my food settle. The doctors told everyone to leave the room and told me and Ryan that we needed to prepare for the worst. Ryan and I grabbed hands and told them that we had faith in God and his plan for us. I went in the operating room at 6:00pm and Jack Ryan Lee was born by C-Section at 6:17. He was crying and breathing and pink just like any typical newborn. I watched as Jack stuck his little thumb in his mouth showing us that he was hungry. These were all things that he did perfectly that the docs thought he would not do. They told us that he was 3 pounds and 14 oz. and 17 1/2 inches long. We were amazed and overjoyed that our miracle baby finally made it. The one we fought for and he fought for us too for SO long was in our arms and beautiful. Jack spent 9 days in the NICU (neonatal intensive care unit) at Baptist Hospital in Jacksonville. That was a whole other challenge that we could could not be more ready to get through and get home. We brought Jack home at 3 pounds and 15 oz.

Prayers and Faith

After that ultra sound we began a roller coaster of good news and bad news. At first his heart was bad, then good, then we were told he would need open heart surgery. It was always something. Then as we got farther along our ultra sounds showed that we were actually having a boy. We started getting very excited and hopeful, and scared at the same time. The prayers began and continued all over the country: Florida, Kansas, Georgia (including a local prison ministry of 150 inmates), Montana, Texas. Then spread around the world: A teacher friend of mine spent the summer in Greece and she and her mother lit a candle for Jack and our family at their church. Family and friends prayed and friends and family of our friends and family prayed. People who did not even know us prayed for us and followed our story. Everyone began cheering for Baby Boy Lee as he began to prove doctors wrong time and time again. Our doctors did not think we would survive pregnancy much less birth and life after birth. But our GOD IS SO GOOD! He gave us blessing both big and small just when we felt overwhelmed. I remember Ryan and I had just received some bad news from a doctor and we sat at our kitchen table crying, and felt like giving up. Then the phone rang and it was my Dad's friend Craig from Valdosta. I had only met him once or twice. Ryan answered the phone and Craig began to pray for us and quote the most beautiful scripture that we needed to hear at that moment. Needless to say it was a pick me up straight from God. These kind of things happened over and over. We had numerous people call and pray with us over the phone. Our preacher Ken Mick and two of our elders from Argyle church of Christ came and prayed with us. It was a beautiful experience that we will never forget. We truly felt God with us in that moment. We want to thank Argyle COC, Central Avenue COC, Mullinville COC, Grace Chapel COC, and many others around the contry for their support, prayers, cards, and phone calls. Thank you also for supporting our families that attend those churches.

The Pregnancy

Last October we found out we were expecting our second baby, and of course we were filled with excitement and joy. Our two-year old daughter (at that time), Griffin, was overjoyed about becoming a big sister. It started with the typical 2 months of morning sickness and tired out of my mind. I was still teaching school and chasing around a busy 2 year old, but things were going very well. Blood test came back normal, and we even had a 16 week ultra sound that showed we were having a girl. January came around and so did our 20 week ultra sound and check up. We went in so excited to see our baby. The ultra sound tech said everyhting was looking good, it did look like we were having girl, and then she said "Does anyone in your family have Club Feet? I think you baby has club feet." My heart dropped I had no idea what that even was. OF course I went and searched the Internet to find out. (i do NOT recomend seraching the Internet for medical cases, always WORSE cases including pictures) So then I cried for three days. The docs referred us to an ultra sound specialist here in Jacksonville. The Regional Obstetric Consultants (aka "The ROC"). We had no idea what we were getting into. I had just come to terms with the feet issues and the threapy that would be needed to fix our baby's feet. So we show up for the appointment and they begin the ultra sound. Theyar spending way too much time on the baby's hear tand brain without saying too much to us. That is when i ask them, "Is everything okay with the heart and brain?" The Dr. stops and says, "I'm afraid that there are multiple problems here and things do not look good." I about had a heart attack and Ryan just fell into the chair beside me with a thud. It was the last thing we ever expected to hear.