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. : )