Monday, September 27, 2010

Ramblings....

I can't even think of a title for this post. That is what my brain feels like, no complete thoughts...To begin, Mallorie's funeral was beautiful. To all of you families who have given your babies over to be with Jesus, I have to say that I can't begin to know how you felt. Watching Connie and John and their beautiful children do this on Friday was more than I was prepared to do. The funeral was held in our Cathedral which is such a beautiful, historical church. The music was just right and the many priest and the wonderful talk by Fr. Jamail. But I was not prepared for the tiny white casket that was wheeled to the front. We all know where Mallorie is, I don't question that at all. I also witnessed Dr. B(her pediatrician and Tracy(her nurse of many years) lay the pall over the casket. What courage and strength that took. The way Mallorie's life played out left not a doubt in my mind that God brought her here and He took her home. Mallorie's life taught us what perfection and unconditional love was all about. Also, Katha and Vic Nelson gave a wonderful reception with food and a place for friends to gather. So today I think of Mallorie and all of the other families who I have met through this blog whose babies are resting in the arms of Jesus.

I finally took the pictures with Annabel and her two other nurses. Rebekah is still with us 3 days a week and Debbie is with us the other three days. Ashaunti is our night nurse and comes three nights a week so I can just....hummmmm...do nothing if I want! It is so good to know that I can sleep straight through without waking. I have to say I love all of my nurses and feel I can leave Annabel with them and not worry at all. I feel like they tend to her medical needs as well as just spoiling her rotten. She still goes to school if she is well and the nurses attend with her.

This week Annabel had day surgery in Houston. She has had a fatty growth on the back of her right ear since I can remember. It has begun to grown this past year and at times become irritated and red. With the oxygen tubing and her sunglasses it was becoming more irritated. So when her GI doctor said he wanted to put her to sleep for more biopsies, I quickly made an appt. for the surgeon and it was scheduled. She did great and came home the same day. She stayed home and returned to school this morning.

One of the pictures is of the twins with their friends. Mel and I went up to visit with them the weekend of Mallorie's passing. We took them to dinner and had so many laughs. They seem to love everything about College Station and Texas A&M. They are so lucky that they love their two roommates and enjoy doing things together. Our home is so different with them gone. This may sound crazy but I wish I could hear the back door slam when they came in from school, also that I could fuss and tell them again, please bring down your dirty clothes for the 100th times...They came home this weekend and I wish I could have caught Annabel's reaction when she saw them for the first time since Aug. 20th. It was priceless....

Yesterday we went to visit with two very special people. Loma and Lanny who have been a foster family with our agency for several years. During Annabel's first year when I thought I couldn't do it any longer they would step in and help me out. When she became so sick this is who I would call and they would come drive me to the doctor and relieve me at the hospital. Their pastor, Rick, never fails to visit Annabel when she is ill in the hospital. So yesterday was 7 years that their church has been together. Their whole congregation prays for Annabel and it was obvious when we entered the door of this most welcoming church. Christian Fellowship is truly doing God's work here on earth and I am so touched and thankful for this church family. Also, to Loma and Lanny who have loved Annabel and myself so much...

One of the pictures of Annabel is in her gait trainer. She isn't standing all of the time but more and more she raises herself to a standing position and propels herself around the room. I love the freedom that this allows her be upright.

The picture of Annabel in her stander could be titled "you've got mail". It is from Tehya, Sage and her mommy, Janet who send her cards. She loves to see the pictures and look at the cards. Thank you so much for thinking about her. You can see she loves them.

Annabel continues to be totally TPN/Lipids and is gaining weight rapidly. I will call and complain today and hope that this will get cut back and the weight won't coming on so fast. When the biopsies return hopefully this week I will get aggressive about what is the actual reason Annabel can't take anything into her tummy. Thank you to all for keeping Connie's family in your prayers and to all others also who are waiting for transplants, uncontrolled seizures...











6 comments:

Laurie in Ca. said...

Beautiful post Cathy. I have thought of nothing but Connie and the family this past week. My heart hurts so much for them. I miss Mallorie so much and don't even know why. My prayers are with them day by day. Asking God to be gentle in their new normal they now face. Love the pictures and love you girls.

Love and Hugs, Laurie

ANewKindOfPerfect said...

I love all the pictures! My heart is so heavy for Mallorie's family. I think this is the one downfall to having so many friends online. We have certainly lost too many friends. :(

I am glad that Annabel is doing well, and that her little surgery went smoothly.

Annie said...

Thanks for the beautiful pics and the summary of sweet Mallories's life. I was so very touched that Dr. B and the nurse put the pall on the casket.

You have some pretty special doctors there in Texas who would even attend a service let alone be a part of it. In my part of the world, the doctor is God who decides who lives and who dies and the church sanctions abortion for all the babies with anomalies, disabilities and a shortened life span.

I hope public health care doesn't destroy what you have.

Mrs Redboots (Annabel Smyth) said...

Lovely pictures! It's good to see Annabel looking so well, and enjoying standing up and trying to walk. I do hope they can find out why her digestion isn't working properly so she can start eating again - I'm sure she enjoys her food when she can digest it.

I am so sad for Connie and her family; they will miss Mallorie quite dreadfully, I know.

Kathy said...

Cathy, I LOVE your ramblings!!! Good to know what is going on and seeing all the wonderful people in your and Annabel's life that love you girls so well!!!

Prayers continue!

Love you girls!!!

The Hull Munchkins said...

Sweet Annabel, what a little darling! I love reading your blog and seeing such love in your family for this child.

We have a little girl with lots of special needs and some days are very hard. Others are full of joy and it's just difficult to make sense of all the emotions. I also just read Mallorie's family blog and am sad for their loss. They too have such a sweet story of love for Mallorie in the midst of her struggles.

Hang in there Annabel. Hope your tummy feels better soon.