WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, April 1, 2016


In just a few days Abby will be 21.

Of course I have been looking back over the years and remembering each and every wonderful stage she went through- newborn,toddler, childhood,teens.. and each memory is one that has filled my heart for 21 years now.

After our first child we were not sure we wanted a second. Not because our oldest was anything other then a gift but we were sooo young and so poor and I still remember the panic of just trying to figure out how to buy diapers.

We made the decision to have Abby(her sissy was an unexpected gift!) and she completed our family, our hearts. Each day I wake up and still want to pinch myself at my good fortune. Over 25 years of a great husband and amazing daughters. Through thick and thin we are closer today then ever, I have truly won life's lottery.

Over the past few months I have had a lot of different feelings and thoughts. Generally I try to be upbeat(or outraged and angry!) when I post but recently not sure if it is simply the approach of "empty nest" or maybe just another stage in "living" as a parent with a child with a chronic disease. I have felt a certain sadness as this birthday approaches.

The triggering event for me was a few weeks ago. Abby has carefully saved money monthly for a year to buy a macbook pro for herself. Finally, she had enough saved up. We talked about her going to the Mall to the apple store to buy it. We could help her shower the day before. She could wear a mask.. gloves if needed! With the wheelchair just maybe she could enjoy the outing without triggering, without catching every virus hiding in the mall. Of course even at best she would be exhausted and flared for a few weeks, but certainly worth it, right? She should get the enjoyment and anticipation of slapping her hard saved money on the counter. As the big day approached it was clear she wasn't up for it. But, like always she was okay with it. She wasn't stressed at all and pointed out that really computer shopping wasn't ever her thing and she was sure her Sissy and Dad would enjoy making her purchase for her. Zen, just such an incredibly easy going person who always can let the small stuff go and appreciate all the good. I think that is what made it worse for me. Maybe reality? It isn't normal for ANY 21 year old to save that much money and be fine and not disappointed about the big purchase.. but Abby she isn't any normal 21 year old,between her incredible and gentle spirit and being chronically ill she tackles the world differently.

So to compound my feelings the Hubby and oldest got the computer home and were excited for Abby to see it. Instead she was tired and headed for a nap with a promise to open it later.. each day we asked and finally her sister opened it. She just did not have enough go-go to dedicate to unwrapping all the plastic,casing and boxes that were entailed. Not enough energy to focus to learn how to use it. Granted, part of it is she has always been incredibly patient as a person.. all those Christmas mornings she would always take her leisure in slowly and savoring each and every gift.. she was one of those little ones who was happy opening one at a time to play with and dragging the unwrapping out throughout the day or week if she could! The rest of course would tear into everything and drag her back to the tree to "hurry up!" so the rest of us could open another.. she never got upset about us making her do it our way.. but I often wonder if as a child if I let her unwrap at her leisure if she would even be done by July? :-)

The computer (weeks later) is unwrapped and sitting unexplored and still unused. Just too tired and not worth the energy right now. She will get to it eventually I am confident since her primary laptop is dying a slow and miserable computer death, but the whole experience really highlighted what Abby so patiently deals with daily. When you are too tired to be excited about opening a long awaited carefully saved for purchase?

More then anything else that has happened in the past 5 years this hit me. It highlighted the losses for her. It highlighted my role in her life and my feelings of helplessness to give her the world on a platter.. heck, even if I could offer the world to her on a platter she doesn't have the energy to lift that fork and tackle it. I suspect my feelings right now are highly impacted by the "end of an era". Abby is our baby and she is now 21 and I know the days of littles running through the house are somehow officially over and I am not wanting to let that part of myself go quite yet. Perhaps that is why there are 10 new chicks in my garage! Or why I am determined to feed the stray cat that wandered in the barn horribly thin or the stray scared dog that hopefully waits for me to bring it some food. I think though also it is a stage in our journey with Abby, one that I hope passes quickly for me!

Abby is remarkable. Each day is joyful for her. She has connected to the world in a very different way then someone who isn't chronically ill but just as vivaciously. She owns her world and has grown into such an incredible person, an adult. Kind, patient,deeply feeling, thoughtful, never angry or catty.. she ALWAYS see's the world and the people in it in the very best light and she is happy. She continues to teach herself various languages and her depth of knowledge in cultures, history, politics, and more are beyond most 40 year olds I know. Add to that she is so gentle , so patient and kind, oh and beautiful too! Somehow she got the best of all of us.

Perhaps with her gifted approach we have given her the world on a platter. But, her world, her platter, and her fork are just so creatively created and customized for her that she is able to have that sense of fulfillment. Square pegs never fit in round holes, and I forget that she is an expert in shaving off those sharp corners and making everything a custom fit for herself,another gift of hers.

Our whole family continues to be grateful for her general stability. The move has definitely been the right one. The well water continues to be such a huge positive! When she does have the energy to shower she can without it causing anything other then fatigue. Her kidneys continue to have small flares a little too often for my comfort but no regular major flares for a few months now. She has had a significant increase is bruising and this time of year hives are just a given! Considering the trees,fields here she hasn't been as reactive as I suspected she would be. We worry about her being rested as feeling well rested seems always right out of reach for her, but she manages it so well and rarely let's it bother her.

We have revisited a few foods recently that she is tolerating well. We have opted to keep them as rotational to hopefully keep them! :-)

While birthday 21 will likely be at home in pj's like the past 6 or so birthdays it will be celebrated with joy.

Abby is one of the lucky ones! The continued stability is very promising. Her unique biology leaves the door open, one day perhaps sooner or later she will gain rather then just holding on. Better then that, healthy body or sick body, she is remarkable and at 21 it is just beginning! Instead of the "normal" 21 year old things that are so predictable she gets to adventure into the unknown! A journey waiting for her to create. I don't doubt for a second that like Abby it will be remarkable.

Happy 21st Birthday Abby!


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