It is almost 2 am and I cannot sleep. That is not normal for me. Usually just minutes (sometimes seconds) after my head hits the pillow, I am asleep. I spend many of my evening hours exhausted and love that moment when I get to climb into bed. Tonight I have been to bed multiple times, but have not fallen asleep. I have too many things on my mind. I'm hoping that by coming here, I will clear my mind and be able to get some sleep.
I had a fantastic time with some of my friends tonight playing Bunko, talking, and laughing. After everyone left, I had cleaned up a little bit, and put my boys to bed, I hoped onto face book. I wanted to see how my Leukodystrophy family was doing. I saw that my dear sweet friend Denise, Ryder's Mom, is really struggling. Understandably she is struggling. She is getting the help she needs and for that I am very thankful, but my heart aches for her. I love Denise like a very close sister. I know that she is a strong, amazing woman. She is hurting. Please keep her in your prayers!
Another thing that has been weighing heavily on my mind is accepting what I need to do for Annalise. She is definitely going through a period of regression. I've been able to see it for a few weeks, I think Mom's almost always notice these changes first. I didn't want it to be, so I said very little about it. It becomes impossible to ignore though when it begins really affecting her quality of life, when she becomes frustrated and is in tears trying to get us to say the right thing when it is obvious to her that we did not understand what she said. Or when her older brother says,"Mom, why is it so hard to understand Annalise now? I have no idea what she is trying to say." It is not my imagination, it is not just my fear, it is real and there is nothing I can do about it! I hate that!
She is also more weak, in her jaw, in her legs and core. She struggles to eat, to swallow. A couple of nights ago she woke up crying. I went in to her and realized that she was trying to move from her back to her side so that she could lie on her pillow pet. She couldn't do it. I helped her and she fell back to sleep. She woke up not much later struggling again. I pulled her close, told her I loved her, and snuggled with her. We both went back to sleep. Lately when she wakes up in the mornings, she often says that she had a bad dream. She seems more fearful of going to bed now. It could just be her age, but I can't help but wonder if some of these moments of not being able to move into another position feel like bad dreams to her. I know it would be a nightmare for me!
Her shoulders are becoming more stiff. Luckily we have wonderful therapists who help us deal with the changes going on with her, to show us more stretches and activities to help with range of motion. I wonder if it is time to visit Dr. Gray, Bryce and Annalise's psychologist, again to get more ideas on how to help Annalise emotionally handle these changes. She gets very frustrated.
It is definitely time to take her in for a weight check, to have a swallow study done, and I'm guessing to start having a GI doctor follow her progress. I guess I've known that for a while as well, but in my crazy mind, I sometimes think that if I don't take her in to check these things, everything will stay the same. It only becomes truly real when a doctor tells you it is, right? So if we avoid the doctor, she will continue to be fine. See, this stuff does mess with your mind!
My 10 year old said something last Sunday that is also stuck in my head. For some reason Bryce has been gagging and throwing up a bit more the last few days. We are tweaking his feedings just a bit to see if that will help. As of now, I honestly think it is just that and not something more serious. However, children do not always understand this. Sunday Bryce threw up his dinner. After watching this, sweet Jacob said, "I hate to say this, but I think I know what this means. I think it means that Bryce is closer to dying. Bryce and Annalise are both not doing good right now are they?" The look on his face when he said that and the fear I saw through his tears the next day as he watched Bryce struggle for a breath after throwing up again are etched in my mind forever. We try to keep our older boys from witnessing these things as much as possible, but they are smart and they know what they see. We are honest with them. I tried to reassure him that although they are struggling, it does not necessarily mean they are closer to dying. We just need to remember that our Father in Heaven knows the plan, the big picture. It will all be okay. We need to keep praying and helping them however we can.
I had a fantastic time with some of my friends tonight playing Bunko, talking, and laughing. After everyone left, I had cleaned up a little bit, and put my boys to bed, I hoped onto face book. I wanted to see how my Leukodystrophy family was doing. I saw that my dear sweet friend Denise, Ryder's Mom, is really struggling. Understandably she is struggling. She is getting the help she needs and for that I am very thankful, but my heart aches for her. I love Denise like a very close sister. I know that she is a strong, amazing woman. She is hurting. Please keep her in your prayers!
Another thing that has been weighing heavily on my mind is accepting what I need to do for Annalise. She is definitely going through a period of regression. I've been able to see it for a few weeks, I think Mom's almost always notice these changes first. I didn't want it to be, so I said very little about it. It becomes impossible to ignore though when it begins really affecting her quality of life, when she becomes frustrated and is in tears trying to get us to say the right thing when it is obvious to her that we did not understand what she said. Or when her older brother says,"Mom, why is it so hard to understand Annalise now? I have no idea what she is trying to say." It is not my imagination, it is not just my fear, it is real and there is nothing I can do about it! I hate that!
She is also more weak, in her jaw, in her legs and core. She struggles to eat, to swallow. A couple of nights ago she woke up crying. I went in to her and realized that she was trying to move from her back to her side so that she could lie on her pillow pet. She couldn't do it. I helped her and she fell back to sleep. She woke up not much later struggling again. I pulled her close, told her I loved her, and snuggled with her. We both went back to sleep. Lately when she wakes up in the mornings, she often says that she had a bad dream. She seems more fearful of going to bed now. It could just be her age, but I can't help but wonder if some of these moments of not being able to move into another position feel like bad dreams to her. I know it would be a nightmare for me!
Her shoulders are becoming more stiff. Luckily we have wonderful therapists who help us deal with the changes going on with her, to show us more stretches and activities to help with range of motion. I wonder if it is time to visit Dr. Gray, Bryce and Annalise's psychologist, again to get more ideas on how to help Annalise emotionally handle these changes. She gets very frustrated.
It is definitely time to take her in for a weight check, to have a swallow study done, and I'm guessing to start having a GI doctor follow her progress. I guess I've known that for a while as well, but in my crazy mind, I sometimes think that if I don't take her in to check these things, everything will stay the same. It only becomes truly real when a doctor tells you it is, right? So if we avoid the doctor, she will continue to be fine. See, this stuff does mess with your mind!
My 10 year old said something last Sunday that is also stuck in my head. For some reason Bryce has been gagging and throwing up a bit more the last few days. We are tweaking his feedings just a bit to see if that will help. As of now, I honestly think it is just that and not something more serious. However, children do not always understand this. Sunday Bryce threw up his dinner. After watching this, sweet Jacob said, "I hate to say this, but I think I know what this means. I think it means that Bryce is closer to dying. Bryce and Annalise are both not doing good right now are they?" The look on his face when he said that and the fear I saw through his tears the next day as he watched Bryce struggle for a breath after throwing up again are etched in my mind forever. We try to keep our older boys from witnessing these things as much as possible, but they are smart and they know what they see. We are honest with them. I tried to reassure him that although they are struggling, it does not necessarily mean they are closer to dying. We just need to remember that our Father in Heaven knows the plan, the big picture. It will all be okay. We need to keep praying and helping them however we can.
6 comments:
Tammy, I love you. I love, Bryce. And I love Annalise. If I were there I would give you a hug. I am so sorry. I think of you and your dear little ones almost everyday. You are such a pillar of light and courage. Annalise and Byrce are such special spirits. I hope you were able to fall a sleep after this post.
Thank you, Katy! Love you too.
Can I just ditto everything that Katy said?
That, and that after reading several of your blog posts the other night I went in to Vaughn and asked "What gives? How come so many medically difficult things are happening to John and Tammy? I just don't get it. What gives?" I know it doesn't necessarily help to feel these thoughts of it not being fair, but I just couldn't help but feel it at that moment.
I'm sorry if I've said anything wrong. I don't mean too. I don't even know what to say most of the time, but just now I spilled a few uncensored thoughts on to your blog. I hope that is okay.
We totally love you. I don't understand it all as far as the Why's go, but I DO honestly know that God can take our absolute worst experiences and turn them for our good. I've experienced it in my life and seen it in the lives of those I love dearly. I just keep praying that this miraculous transformation of turning hard things for good will happen for each of you in your family, and that you will have the strength to run the race, and many, many treasured moments of joy along the way the brighten the path. I guess in the end these are important things that any of us could ask for in our lives.
Love you so much.
Becca
Thank you Becca! You haven't said anything wrong. Please don't ever worry about what you say. We appreciate what you do for us and that includes sharing your thoughts.
Sure love you guys and hope that you are all feeling better.
You & your family are in my prayers daily!
Tammy, John, Bryce, Annalise, and all of your family - We love you so very much! I think about you everyday and really truly wished we lived closer so we could come over and help, give you a break, spend time with your children. You have all touched our lives in a very special way and I like having your blog to be able to hear how things are going. It is hard to hear all of the struggles everyone is going through. Please let us know how we can help! We love you and continue to pray for your sweet family!
- Shalyse
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