Never Can Say Goodbye

For those of you following our journey and have quite the memory, you may remember that I am supposed to be at U of M right now. I was due for another round of Botox in the pyloric valve (right below the stomach) to help pass food through. We had many reasons why we have put this off, but one of the main reasons was knowledge. Botox for gastroparesis is already deemed experimental. I have had pretty good results with it so far, although we know the closer together you receive it, the less effective it is. So that, among many other issues, has determined to put it off for a little while longer. I am continuously praying and asking for prayer, that I would have the ability to eat my calories that I need to keep me stable and maybe even gain some healthy weight. Recently, I have met someone who also has GP that has gave me great support and ideas on how to take the steps that I need to live better with this. So far I have reintroduced egg, bone broth, and now my latest, coconut oil, into my diet! I know it doesn't sound like much, but for me, this has been huge. The egg has replaced  a serving of juice (Hallelujah!) I can tolerate only about one a day, but it's really great to eat something that isn't pureed! The idea of bone broth really grossed me out. I admit it, I was one of the people that bought chicken breast, not for health value, but because I hated touch the bones. I had to get over that to be able to get in this nutritious replacement for fluids, especially needed during flare ups. It's pretty good, it gives me the salt I crave and has a host of great things about it. The latest and most excitement for me, is the coconut oil. My friend has encouraged me to try this for a while now, but I have been to worried the oil would cause problems. One of the things my doctor told me is never to eat coconut again. I was devastated as I love coconut, especially Mounds or Almond Joy. My husband went out and got it and practically shoved the spoon in my mouth, and low and behold, it tastes like Mounds!! I mix just a tsp into my hot water and it is just delicious! I am hoping to experiment with it more, since it seems to not slow my tummy down like EVOO so we'll see. We also finally moved back home. It's been a harder transition than I had anticipated, but I am managing as best as I can. The kids loved it and Nana and Pop Pop's, but they missed sleeping in their own beds. Aria has been sleeping in her toddler bed, but was in a double bed at their house. Apparently the little dickens decided to grow because now she hardly fits!! So we are going to have to go to a twin and say goodbye to her little bed (sniff, sniff). The great thing that we picked up over at Seth's parents house was organization. We wanted to be sure to pick up after ourselves (being a house guest and all) and it really has motivated us to do the same in our house. We are trying hard to teach our kids to put things back and to more organized as well. It's a good trait to have and relieves stress for us. I also have great news to share about Isaiah. We met with his school about how he has been doing. Isaiah got a glowing report from all who work with him. 2 teachers said they have never had a child his age test that high, ever!! I was nervous about all the school that he has missed (due to me being ill)  might have made him fall behind, but that wasn't the case. He still needs some help with socializing. He tends to like to be a professor rather than a friend. We have been working with him as best as we can to adjust to all of this and have been honest about my situation (5 year old based) and the little tike is just gifted. We had all speculated, but never has it been quite so noted as yesterday. I loved hearing all of the funny stories of how he communicates his thoughts. It was wonderful to get such good feedback after all that we have struggled with. Aria sat and played the whole time, barely making a peep. I just feel so blessed. On a sad note, a dear "brother" of Seth's unexpectedly passed away on Sunday. He was a wonderful man and he won't be forgotten. We just adore his wife and feel so badly for her. We know the pain of loss, and we ache for her. I remember people telling us they felt so helpless to help us, and now I understand what they meant. Isaiah loves Linda and when he heard that her husband had passed away, that night he prayed for G-d to bring him back to life. Mike had prayed for me often and me, for him. While he was going through Chemo and I was going through all of this, Linda would always say to me, "this summer we'll all be sitting by the pool, drinking Margaritas." I know it may sound simple, but it meant so much to me, and it's been a long time goal. I have some other experiences, but I'd like to keep them to myself till I see her at his memorial. The last thing Seth got to tell him was, "hug the kids for us." I keep on imagining him up there at a great feast with our kids running around and everyone smiling, feeling amazing and praising the Lord with joy and gladness. I find it so weird that we are wired to cling to these earthly bodies when in reality, we are destined for eternity with our Lord. Still we grieve for those who have left us behind, not for them, but for ourselves. I still get so choked up thinking about all that has gone on. I feel fortunate for going through all that I have in my life. I don't think I would have cared to "stop and smell the roses." Of course I wish I didn't have to go through pain or loss, but I blessed enough to have the bible show me what is true and I cling to that truth. I am thankful for the knowledge that we don't say goodbye, no, we never really say goodbye. Not only do we carry them in our thoughts and memories till we join them in Heaven forever. I wish I could say this makes me less afraid of dying, but I still struggle with that. What I can say is that it makes me strive that much more to enjoy the days that I do have. I keep on praying for G-d to help me change my pessimistic attitude that I battle every single day, but until then I'll strive. As always we appreciate your prayers for a miracle that this gastroparesis goes away and that I can go back to the way I used to be. I have learned to be grateful for the way I look and boy do I miss having a healthy pudge:) All I can say is for those of you who struggle with how you look, I pray you can see your beauty in the way that G-d meant for us to see ourselves, not for what the media has tricked us into believing is beautiful. You are beautiful and you matter, just the way you are. Blessed be the name of the Lord, for He gives and He takes away. Watch, pray, believe, and be ever so amazed in each minute you are alive.