Six Months

Six months ago today, my granddaughter Anna passed away. It is hard to lose a grandchild but even harder when the hurt is multiplied by having to watch your own daughter go through the pain of losing her child. I know how I feel, but honestly, I can't even begin to imagine the pain my daughter suffered at saying goodbye to one of her own children at only 16 years of age. I don't want to turn anniversaries of Anna's death into sad recounts of hurt and pain so what I would like to do is tell you how courageous Anna was but even more so, I would like to tell you how courageous her mother was.

Anna was born with multiple disabilities, devastating disabilities. We've all read about children like Anna who have been abandoned or shoved here and yonder because their parents or other caregivers couldn't face the situation or deal with the reality of what it's like to have a child who will never meet society's expectations for a happy or successful life. I'm not judging those individuals, I can understand better than most why that happens. Our family has walked in those shoes and I would ask all of you to not judge them either, but to pray for them and their children. In that vein, as strange is it may sound, Anna was lucky, she got the perfect mother for her and her situation.

I watched my daughter's heart break many times over the years. Grief has always been a part of the relationship, starting early on with realization that she had lost the child she anticipated. I know she must have visualized many times how beautiful Anna's life was going to be... the thought of those first milestones, sitting up, walking, talking and looking down the road to the first day of school, friendships and someday even dates and cars and college. Would she want to wear her mother's wedding gown someday or insist on one of her own. A few short weeks after Anna's birth, all those dreams were dashed.

I can't recall a single day that Jamie ever said why... why us? why Anna? why me? I watched her from the beginning roll up her sleeves and learn how to advocate for her daughter. She found the services necessary to properly care for a child with multiple 'un-abilities' and made sure they were in place throughout Anna's lifetime. I watched her fight for nursing care, schools, camps, whatever she could find that would give Anna the best chance at having the best life she could have. No matter how many times the family picked up and moved, Jamie made sure that Anna's services were kept intact as much as possible, fighting different state and local guideines everywhere the family went the first six years or so of her life.

Over the years there were multiple surgeries and procedures, therapies and special equipment. Wheelchairs, in-home nursing and yes, the dreaded short bus were all a part of their lives. Yet Jamie always treated Anna with love, dignity and respect. She took great pride in her. She found the silver lining in having Anna as her daughter and showed all of us who only thought we loved our children unconditionally, exactly what that meant.

This day, I still feel the hurt of Anna being gone. But she lived a life that counted and she gave us all she had in her to give. The last year of her life was by far the most difficult as we saw we were losing her piece by piece and the struggle she made to continue on with us, fighting every step of the way with all that was in her. She was certainaly a most courageous child but why wouldn't she be... look at her mother!

Fly free Anna... we love you and miss you every day.

Another Photo Booth Post

Here is another photo booth strip I made from pictures taken at my daughter's house in Florida this past week. The bottom two were taken in "Kayla's Photo Booth" that we made at the end of their hallway by hanging a blanket to create the background. The other two pictures were taken elsewhere or at different times during my visit and I included them in this strip because I thought Kayla would like them.

The top photo in the strip is Kayla with her older sister Anna on Kayla's birthday. The next one is of Luger, their 'puppy'. Kayla loves Luger! Once we started taking pictures for her photo booth strips, Kayla decided she wanted to take a picture of me. I helped her a little but she had to make sure I was in the frame before she clicked the button. She did a pretty darn good job! The tripod helped both of us as I used the optic zoom to make sure we got closeups. Don't ya just love my hair... I didn't expect to be in the pictures and didn't think to run a comb through my hair before I turned the camera over to her! I had fun hamming it up though! I also tried using the timer and I got one really good picture of her alone using the timer when I experimented with it but I managed to change the setting when I tried to get into the picture with her and only had two seconds to get in. I only caught part of one of my arms and part of my chin... too funny! It will be good for out-takes if I ever put together an album of these pictures though! I love the pose Kayla struck in the last picture. She is a natural and we had a great time together doing this. Our photo booth session will be a special memory for me from this trip!

I wanted to see how the black and white would look against the color version. I'm not very happy with the noise I added to make it look more like an old photo strip. I didn't get the effect I was after with that but was too tired of messing with it to change it. I still need to do a final version of the strips to print out and send to her so I'll make corrections then. I will probably do both color and black and white to send her.

I will do my best this week to write up instructions on placing the pictures in the strip for those who asked.

The template I used for the photo strip was downloaded from the web. I failed to give credit for it in the last post but here is where you can get the strip if you decide you want to do this project someday.

Nicole Seitler
www.SugarplumPaperie.com

The zip file has both a black and a white strip available and is a free download.

Happy Birthday Anna!

'I feel that the real drama of life is never center stage, it's always in the wings. It's never with the spotlight on, it's usually something that you don't expect at all.'
- Fred Rogers

'something that you don't expect at all'... that's you Anna. What an unexpected addition you have been to my life. You taught our entire family just how important life is for the mere sake of life itself and for no other reason. No child, no young woman has ever been more loved than you. You are not often center stage but you are always at the center of this family's being. We are truly better for having you in our lives.

I love you Anna... Happy 14th Birthday!

Anna - Worry and Gratitude

Monday morning update - Anna did get to go home late yesterday afternoon. She will remain on antibiotics to finish out that course of treatment and should be able to return to her normal routine in a few days.

We're a thankful family this morning. We had a scare with my granddaughter Anna yesterday but all seems to be better now. She ended up being transported to a hospital in the Tampa area. She had been listless and non-responsive all day according to her nurse who called both Anna's mom and emergency services. I won't go into specifics, but it appears she received too much of a new medication from the nurse on duty the night before. Anna vomited and then aspirated requiring further treatment for aspiration pneumonia. Once my daughter Jamie got home, thankfully just before they had Anna loaded up to leave, she managed to secure Kayla with a friend, then she and Anna headed out to the hospital together via medical transport.

Anna, taken about a year and half ago. It gets harder and harder to get good photographs of her. I just wish I could photograph her amazing spirit as well.

After a night in a hospital, she seems to be recovering and may possibly come home today. There are so many daily concerns with Anna that I sometimes forget what a high risk child she is. What I never forget is the miracle of her being.

I am just very grateful this morning that she is okay and that for Anna, it is all just another day.

A Birthday Party And A Meltdown

Yesterday afternoon, my daughter Jamie had a party for her daughter's birthday. My youngest granddaughter, Kayla, turned 5 on the 3rd of January and this was the first opportunity, between Christmas break at school and all the holiday activity, to plan a party and get out invitations to all the children. Kayla chose to have a party at the local bowling alley and it was a hoot. So if the party was so great and the kids had so much fun then what caused a meltdown and who melted?

The explanation will follow - the meltdown happened to me!

I have to start by explaining for those who don't know my family, that Kayla's older sister, Anna, was born with multiple devastating disabilities. I'll leave the very involved explanations of the possible / probable cause of Anna's condition for a later post. Being as she is now 12 years old, it is something I've discussed so many times that I don't often feel a need to do so anymore. Anna is who she is and we love her tremendously. I do want to say here that Anna and Kayla are two of five beautiful granddaughters that I have, all of whom are of course extraordinary in their own right! I will also leave discussion of daughter Dee's girls, Erin, Emily and Sarah Grace for a later time. Suffice to say, you are in for a treat there as well!

I probably also need to explain that I have been at Jamie's home in Florida, since the 22nd of December. My original plans were to be here for Christmas and to stay to help with a surgery Anna was to have in what we thought would be early January. It was a fine and wonderful plan but the surgery didn't get scheduled until the 25th which means I'm staying just a tad bit longer than expected. Add to that the fact that I brought with me a cat, Mr. Woody K. Nibs (another story for a future post), and my dog Ginger. Thanks to my son, John, Ginger is safely back home in Louisiana, staying with him until I return. It makes life here with Jamie and her two girls, their dog Winston and a gaggle host uhhmm, well just a lot of great nurses who help make caring for Anna a little easier... thanks again John!

Meantime, back to the bowling party and the meltdown.

If you've never watched a group of young children, most of whom are barely 5 years old, bowl, it is hilarious. They are so serious and in the case of my granddaughter Kayla, quite expressive in their reaction, as seen in the photo coming off the alley pumping her fist in the air.


I watched, I laughed, I helped. I helped with the food and the cake followed by the opening of presents which was accompanied by lots of squeals and giggles, corralling of kids and assuring them that their gift would be opened next!

When all the festivity was over and done, Kayla passed out bowling bucks and the party kids headed for the arcade. Several adults helped clean the mess and I started breathing a sigh of relief when I looked over and saw Anna sitting in her wheelchair, looking very uncomfortable. Anna's spine is deformed and her chair is supposed to be adjusted for comfort but it seems right now to be one of the most uncomfortable places she can sit. I decided to take her out and just sit with her on my lap for a while. I wanted to be close to her and wanted her to be more a part of what was going on.

Almost from the moment I had her out of her chair and on my lap in an extremely unyielding, uncomfortable bowling alley chair, the water began forming behind my eyes. I seldom cry for Anna these days, not because her situation is less sad or any easier to deal with, but simply that I've come to terms with it. I came to terms with it very early on, as did her entire family. She has been fully accepted and completely loved from day one of learning about her condition. I think I might have been fine at this point, if my daughter hadn't come up and realized that I had tears in my eyes and openly asked me what was wrong. I think I could have kept it to a minimum but that didn't happen... the dam burst open and the contents of the salty seas of Mimi (that's what my granddaughters call me) were unleashed. I don't think I was truly sobbing but everyone was aware that I was crying and I wished I could stop and yet I couldn't. I am not ashamed of the tears, but would hope that everyone who saw me crying would understand that I don't regard Anna as needing to be cried over or pitied. I can't tell you an exact reason why I 'lost' it, other than maybe just wanting her to be able to experience what the other children were doing or just one time be able to get up out of that damn chair, to walk, to run, to sit up on her own, to speak, to bowl with the other kids, to hear her tell her mother that she loves her, and very selfishly I will add here that I wish she could tell me that she loves me too.

You know, now that I think about it, I think she was telling me she loved me and maybe that is why I was crying... maybe it was the way she snuggled against my chest, maybe it was the warmth of her body next to mine, maybe it was the smiles and her soft sighs that were all saying how much she loves me and maybe, just maybe, that's why I melted.

I love you too Anna!