I don't say it much, but I am thankful!

James was born with a birth defect. He was born with a Lymphatic Malformation; a condition that affects 1 in 4000 live births. Lymphatic malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. Often described as a sponge-like collection of abnormal growths that contain clear fluid. Macrocystic malformations are large, soft, smooth clear masses under normal or bluish skin. Microcystic malformations present as small, raised lesions containing clear fluid. Superficial (visible) lesions may present as tiny clear bubbles that sometimes become dark red due to bleeding. There is no known cause for this condition and it is not genetic. We found out our child had this condition at our 28 week ultrasound. 
James was a lucky one as he has had amazing treatment and outcome from that treatment. Many children born with LM live with tracheotomy, feeding tubes, and ongoing treatments.
I am part of a FB group Lymphatic Malformation Awareness Group and am reminded every day how lucky we are. James is thriving and happy. There was a time each day was filled with questions of survival, treatment plans, and fear. I am very thankful for the health of my family! 
Here are some previous posts on this journey:
Blog posts on LM

How much I've learned...

In the years since I started this blog so much has changed. My babies have become boys, my boys have become young men and the one who started it all, my Mom, left me here(well, not really but it felt that way for a bit).

My babies are teaching me to stop. I don't often take moments to decompress and just be. When Gavin was an infant I couldn't even sit still long enough for him to nurse. He would often nurse, legs dangling and me doing something or chasing someone:). I joke now that he learned to eat on the go, but really I feel a sense of sadness for him that I started his life off with my sense of urgency to "do it now". I have been trying very hard to really listen to my sweet 7 and 9 now year old's, they will be gone before I know it! Can you believe James was a baby when I started this blog? Babies for but a moment in time.

My boys are teaching me that boys really do become men, far sooner than we imagine. When they are men you cannot protect them from mistakes like you could as babies and boys.  It is so much easier to be a mother to tiny tots than to boys and boys becoming men. You have to trust that the background noise playing in their heads (you know, all those things you said you "would never say again" or...)will help them make good and safe decisions, and just love them along the way! And now I wish I could say all those things for years more.

My Mom's death taught me more than I can even explain to myself. I thought I would break into tears at the thought of her for the rest of my life, I thought I would never be me again, I thought I would feel alone and empty like I did that first year, forever. I didn't and don't. I miss her so much but it doesn't feel like an open wound anymore, I feel whole and secure and happy she was who she was. I accept that she was a flawed but amazing woman and I accept that I can be flawed and amazing, too! More than anything, I know that those last days I told her what I needed and she heard us when we told her goodbye.

James and rules

James makes up games. Gavin goes along, but the games always involve James winning. He is careful to keep Gavin hanging on by a thread as his games would not work w/ just one. Oh the lives of older and younger siblings...to be repeatedly for a lifetime.
James: " and your guy flies down"
Gavin: "yeah my guy has a the power to xyz"
James : "no, no. Your guy can only abc"
Gavin, crying" my guy never wins"
James: "but he can def, almost"
Gavin" okay"
James"oh, you almost made it"
Gavin usually almost makes it. Somehow he never does.

Hey, Noni gave us those

Gavin and James spent the night at Aunt Erika's on Saturday. Their toothbrushes are still packed in the bags sitting in my car. James has an extra in his bath, but Gavin's was in my bathroom and it is in a cover given to them by my Mom when she was not sick. One of the summers they stayed with her and went to VBS, before her last year when she was too weak to have them.
I took the toothbrush into the boys bathroom and James saw it in the cover.
He looked excited and said "Hey, Noni gave us those"
I smiled. It is such a joy to hear him say these things. One of my biggest regrets is that they won't get to grow up with Noni. I'm so happy they have these memories and hope they last a lifetime.

Thoughts from James and Gavin

With Jim's grandfather in the process of passing and visiting Mom's grave this weekend, death comes up in our family conversations. When I was blogging the other night and crying(which does happen when I start writing to or about Mom), Gavin wanted me to "write this".

Dear Noni, I am so sorry you died. I wish you would come back to life and snuggle me and I would bring you a piece of sandwich for you to eat if you would come to life.

~Gavin

(Me "Anyhting else" Gavin "No it's just good already")

And of course James needed to added something:)

And I love you.

~James

Remember When

Alan Jackson
 
More CMT Music
 
More CMT Music Videos

This song is making me cry lately. I keep thinking of it and I feel so sad. Michael, my first baby, is so big. He is an adult with a girlfriend. He works,he is a talented lyricist and for the most part is wholely self sufficient.
He will likely never live in my home again(I know I should be proud of this...and believe me I am proud of him for this), but it makes me cry...sometimes more than others.
Andrew is on his own this year. He is in some ways even more "on his own" than Michael. He has a girlfriend and a job as well and is such a stable, healthy young man.
James is starting kindergarten this year. Gavin starts next year. I think that really brought this on. I remember when Michael and Andrew were tiny. They grew up overnight once they started school. I think I will cry the whole year!
Off they go...

Happy Birthday Michael!

Today is Michaels birthday. We went to dinner last night with he and his girlfriend and today he is having a BBQ with Andrew and friends(we didn't get an invite;)).
I cannot believe how time flies. He was just a tiny baby what seems like days ago. He has moved out and on to his own life now.
We love you sweet boy!
Then~




and now.