Wednesday, March 19, 2014


My reasoning for keeping things general when it came to my mom and Gary was many-sided: to protect, to carefully work through the feeding issues with my mom, but there was another. And in the later months, it trumped all. My uncle and aunt had planned an entire trip to Europe with my mom and Gary in mind. While my aunt and uncle travel constantly - my mom and Gary almost never go anywhere. This was to be their first trip to Europe - my uncle and aunt were looking forward to being their tour guides. The trip had been in the works for a very long time, and as the weeks progressed, this say, 21 day trip somehow ended on a 44 day adventure!


As the calendar counted, we moved along. Exhausting all viable options, even blending Aviana's food and feeding it to her through a sippy cup. As with all things, the novelty was wearing thin. I began to grow more anxious by the day. 

The research was finished. I had spent months assessing Aviana, and my findings were true and just. My eyes, ears, brain, and especially heart had not deceived. Dave and I were a united front. Our meetings were full steam ahead. My talks with God, Uncle Roger, Aviana, and myself were all in unison. I knew full well the direction we were heading. I understood what this meant.

I started off slow - one here, some there. I began dropping hints to my mom. We had some really good conversations about Aviana and her feeding issues. I made sure to always note that the problem was intensifying. My mom suggested we simply put the tube back - an understandable solution at this juncture. After all, we were so many years into this all too status quo of a life.

I took one look at Aviana on the couch, took a deep breath, and drew every bit of strength I needed to continue. I can't lie though. With the sound of my mom's voice on the other end, the butterflies were flapping about, my voice doing its best to steady itself. I first took the opportunity to once again refresh her on our stance as a family. She came back with her best to understand what that meant, but I could tell, she was scared and some denial started to creep in and possibly take over.

How could I blame her? When needed, we have all jumped to what works for us. We all use our own unique strategies in order to deal with such a tragic situation. She then told me, "We need to try harder to feed her. Bring her to my house. I'll feed her, even if it takes hours. I have the patience." I wanted to cry, but I didn't, that is - until after I got off the phone. I gently explained it wasn't about that. Soon after, the subject was changed and shortly thereafter, she made it clear she wanted to call it a conversation. That was good enough for me. Baby steps.

As Aviana's refusal over meals was picking up the pace, my baby steps turned to leaps of reality (or so I thought). One time my mom finally came straight out and asked, "So are you telling me she's going to die?" My answer back was delicate and through tears, "yes." In retrospect, I really thought we were making much more progress than we actually were. I now understand that two people can really be coming from two completely different places and thinking two completely different things. All along, I thought she knew more of what I was saying - that it would be soon. And she thought it was off sometime in the distant future. I could see her point of view. Honestly, you have to say what you mean, and mean what you say!

Everything was mounting, one atop the other. My family was to leave on October 7th. October 7th!! So with the unbelievable timing of Aviana suddenly hanging in the balance, panic started to set in for me. I didn't know what to do. I had no idea at the time how this would all work. I felt as stuck as stuck could be. Do I tell my mom and Gary and destroy the trip they had planned for such a long time with my uncle and aunt? This was to be the trip of their lifetime! And after everything they'd been through, I couldn't think of anyone who deserved it more. They were all looking forward to it. Actually my mom was a little nervous, but still. For me to take this away felt wrong on every level. But would they prefer to stay and spend that time with Aviana? Or maybe after everything they'd been through with the accident, they couldn't? Should I tell them and let it weigh heavily for their entire trip? Do I go against Aviana, and continue to force-feed her until they get back? Then once they got back, we would give them time with her, and continue on? Gosh, we've been force-feeding her for years, what's another 44 days for them to have their trip? At this point it just felt wrong thoughbecause once you know, you can't unknow. To force Aviana to eat one more day felt awful! I felt like I was between a rock and a hard place My head was about to blow off from the added stress.

More than thinking about the trip, I was worried about my mom and Gary's mental state. What is the best way for them to go about losing their granddaughter - the love of their life - for the second time! Should they be here, or there? Should they know now, or later? Is it best for them to be in another country, or not? Are they going to want to be holding her and watching her die, or not? Gosh darn it!! Should I have just told them everything from the beginning and let them decide? They are adults! Why am I trying to control this whole situation? I thought I was over control issues : / Oh yes, to protect them from pain. But, I might die from this myself! After all they've been through will they survive this? Or will this be the end of them. Will the feeding thing push my mom over the edge? Will it be the final nail in her coffin? I felt I could somehow have it both ways, but how? I would wrack my brain by day, and night. I had the whole Aviana element all worked out, so somehow, someway - I could work this out too. I was torn every which way and everyday. Most everyone had a different opinion, or could see both sides on the matter as well. It was insane.

Typing this right now feels insane. I just wanted to make it all okay - to take any sort of pain I could, but I now realize, there was nothing I could do. The pain is the pain, the hurt is the hurt and it sucks all the same - no matter how you try and shelter or control it for someone else. 

All I do know is I continuously swirled the same questions round and round, "What are the odds of the timing of this trip?? They never go away!! Can you believe this?!?" Had it not been for the trip, everything would have just come naturally.

To be continued...         


  1. Wow. I can't imagine having that on top of everything else. You are stronger than I ever imagined.

    1. I honestly couldn't imagine either. You know Chelsy, early on my favorite quote became, "You never know how strong you are until being strong is the only choice you have." I had no idea, and still don't. I look back and have not a clue how I survived...I'm just happy I did : ) I think most would and do. There are so many amazing stories out there. People are truly amazing when pushed! Especially in the name of love : ) Right? Right!

  2. I'm still here for you, I 'm thinking how can anyone go through SO much! You are amazing and so so strong and continue to be. If only I could give you a real hug , know that I continue to support you in all you do. How can anyone not, if they haven't read Avis story from the beginning.
    I know exactly what a grandmas love is, my Mom passed away when my son Matt was 30, I don't know if you remember me telling you about Matt, but he is like taking care of a 2-4 year old and has been this way since birth. My Mom was literally Matts God, my Mom prayed everyday that God would take both of them together. Well it surely didn't happen that way. I tried to protect my Mom ALL the time too , always trying to look and act like life wasn't all that bad, but you know what? Moms that love us know more than we think they do ;)
    Im rambling now :) But could go on and on.
    I told you once ,even though I never met you, you remind me so much of me, although I feel you've gone through more pain than I believe I could endure. That's one of the reasons I keep coming back to your blog, Ive learned so much from you and continue to do so.
    Give your Mom a big hug from me and let her know that she will ALWAYS be that special grandma to one of the most precious little girls EVER & Gary too!
    I know exactly how much love she had for Aviana , that's why it hurts SO much.
    Cindy in nc

    1. I would so love a real hug : ) Thank you so much for all of your support! Oh my gosh your mom and Matt sound like my mom and Aviana. I know that's why you brought it up!! My gosh, so incredibly beautiful, in every way. I can't imagine how much your family must miss your mom!

      You are EXACTLY right in saying, "Mom's that love us know more than we think they do!" You are spot on!!! I was so worried the entire time, trying to protect her, and as you see it all come out...she ended up being so understanding and amazed me in every way possible. I couldn't even believe it. She felt/feels so bad and tries to take the burden from me. She sure does know more than I think, always. All my life. I thought back through my whole life and laughed, so many little things before where she knew when I didn't think. Too funny. And here I am, stressing myself to death.

      I remind you of you? You are slightly crazy too ; ) Kidding, kind of! You could endure. I know you could if you are anything like me. Like I was saying to Chelsy above, my favorite quote early on became, "You never know how strong you are until being strong is the only choice you have." I'm sure you are awfully familiar. I'm sure I could learn volumes from you too.

      Thank you for everything you said. My mom read and appreciates as well!


      If ever you would like to share, I would so love to hear more about Matt ❤

    2. OMG!! Jen, you've got me repeating over and over again, "You remind me of you" & "I remind you of you" , I'm really laughing my ass off this minute, and had to google it to see if I really am NUTS. OK, it goes like this. You remind me of me, in other words, ummm, we are alike in many ways. And yes! I am slightly crazy too ;) Not kidding :) I needed this laugh tonight.
      I will let you know more about Matt and our family sometime, I don't think I've ever shared that we also have a beautiful Guatemalan girl ,Moriah, that we brought home at 17 months and will be turning 15 in June. But its crazy and my nature that I didn't share that with you because I felt like I almost had to protect you , because I felt some kind of guilt knowing Aviana was such a sick little girl, I cant explain it, but I'm hoping you know what I mean. So, yea, you've touched me in more ways than I can count, and like I've said so many times Aviana has changed my life and only because you shared her with me.
      One day I really hope to meet you and your family, it would be a long trip but so worth it, to hang out with someone that "reminds me of me" HA HA!!
      Cindy in NC

    3. I cannot tell you how much this comment cracked me up. I read and re-read yours and then mine and then yours and was so, so, so confused. But then I got it!! I think we are one and the same, for sure now!! Definitely! Clear as mud! Dave had gone to bed and I was in the family room laughing and loud I thought I would wake him up (and he doesn't wake up for anything).

      I want to know about Matt. I want to know about Moriah. You area amazing. So loving, gentle and sweet. I told Dave what a protector you are and asked him if he could even believe it? He said no. Just amazing Cindy, honestly. I do know what you mean, but honestly I do want to know all about you and your family.

      I would so love to meet you too. And hey, we are travelers now, so who knows. I am really interested in going all over the US and beyond!

      I always tell my friend Cameo I am in slo mo. I am sorry it has taken me so long to respond to this comment, it got lost in my shuffle. I have been on a path to catch up on the blog (which has been sometimes tough in itself), and my comments and emails have been stacked up! I hope you email me.

      I hope you are doing well.

      Love you,


  3. So many people to consider. You did your best to try and shield everyone the best you could for as long as you could. But your poor sweet mama. You're so right - acceptance comes to different people at different times.