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.