Being woke up numerous times a night + Realizing we are NOT a "normal" family+ Walking faithfully = A Post that is way too long!

You would think that after living this life that we have been living for so many years that I would be used to the fact that I never really get a full night sleep. Being woke up numerous times a night by alarms is in fact extremely exhausting and it has been getting me down lately. The last few nights have been soooooo hard, I wake up out of a deep sleep after only sleeping a few hours to hear the oximeter alarms going off and then by the time I do jump out of bed realizing that it is Luke's alarm going off I get woke up all the way to a adrenaline rush by seeing the fact that he is in the low 70's or the 80's, for you that don't know that is dangerously low oxygen numbers. I always check his finger probe to be sure it's on correctly, if it is then I move him, check his oxygen tank to be sure it's not empty, suction him if he needs it and then make sure his cannula has not fallen out of his nose again. Usually his numbers come up rather quickly once I get all that done and then go fall back into bed, only to be woke up again and again and again to go through those same things over and over and over again, night after night after night, I think you get the picture.

This morning I woke up in tears, telling Gordy that something has to change in our lives getting no sleep is taking a toll on both of us. Somedays I'm able to go back to sleep for a few hours, but most days I have to get up of course to get Luke bathed and fed and get my day going. People ask me all the time why I don't take naps, for one thing I've never liked taking naps, my personality type just doesn't see them as something that is productive, also it's challenging to find the time in my days to take a nap. People also tell me all the time that I need to go to bed earlier, but I will be honest with you I would rather stay up late if Luke is having a hard night than to go to bed and be woke up time and time again. There is also the fear factor when he is doing really bad knowing that if I do go to sleep I may not wake up in time to help him because I won't hear his alarm. I'm thankful for the fact that I've always been a pretty energetic person, relying on God for His amazing strength and help is the only thing that has gotten me through these past years, but I will be honest it has taken a toll on my life and I would appreciate it if you would really start to specifically pray that Luke would start to breath better at night so that Gordy and I can get some really good sleep in our lives once again.

I've come to the realization this week, which many of you already know, that we are NOT a "normal" family. As much as I like to think of us being like other people out there we just aren't. That too has been a bit of a depressing thought for me, not that I want to be just like everyone else I never really have, but I do wish that our life could be just a bit easier at times. You see for many, many years now we have dreamed about taking a trip across America, I've always wanted to go to Washington DC. When Gordy first started working at REI 20+ years ago we knew that one of the perks working there was the fact that he would get a 4 week sabbatical once he was there for 15 years, 5 weeks at 20 years, every 5 years would add another week onto his sabbitcal. We began to think and dream about the time that we could take that sabbatical and go across America with the family. He hit 15 years 1 year after Luke's accident and we knew that we couldn't possibly take our family across America with Luke's special needs, but being the optimistic person that I normally am I thought that perhaps we could do it after waiting for 5 years. He was supposed to take his 20 year sabbitical last year but thankfully REI had mercy on him and let him delay it a year, because Luke had pneumonia almost 4 straight months and we knew that he just wasn't healthy enough to go at that time. Once again we thought perhaps we would be able to do it this year but after Luke's recent stay at the hospital it has come to our realization that Luke is just too fragile to take across America and he would be absolutely miserable traveling in a van for hours on end, day after day.

To be honest with you this realization has really knocked me for a loop, everytime I think about it I want to cry and then I think to myself Sue get real, there are people in Japan right now just trying not to starve to death or they are still not sure if their loved ones lived or died during the earthquake, there are people out there that have never taken a vacation and you have taken so many, there are people out there that are hungry and would love to just eat 3 meals a day, there are people out there that are out of work and desperately needing a job, there are people out there that are homeless, there are people out there that have just lost a loved one, there are people out there that . . . . I know that with time I will be okay with not taking this trip, it just hurts right now.

At the beginning of the year I decided that I was going to start walking again, I made a new year's resolution of walking everyday this year, I quickly realized that was just a bit over zealous so I said that I would walk at least 5 days a week, so far I have averaged about 6 days a week, walking at least 3 to 5 miles a day. Walking has been really good for me, for many reasons of course one thing it has helped me to lose 20 pounds so far, which is about a third of the weight I want to lose, it has also helped me to get in better shape, it helps me to clear my mind and to spend sometime listening to worship music and spend some time in prayer, it has given me something to look forward to on those rare days that it is beautiful outside. For so many years I have blamed being "fat" on the fact that I have so much stress in my life I can't take the time to do this for myself, also I've blamed it on the fact that my thyroid is messed up, but I've decided enough excuses I'm sick and tired of being uncomfortable with the way that I look and feel and I'm going to do something about it. With God's help I'm going to keep walking and perhaps one day be a whole lot healthier.

I realize this post is mostly about my "sad" life, sorry if I have sounded like I'm feeling sorry for myself, perhaps I was:-/ I try not to dwell on the fact that our life is so challenging, but since this is my journal of Luke's journey since his accident I needed to share this if nothing else but for myself, because you see I don't plan on staying this way for long. I know without a shadow of a doubt that I will overcome this feeling of discouragement and weariness, because I know my God is faithful and He has promised to never leave me or forsake me, He has told me that if ask Him to carry my burdens He will, He has also promised me that I can do ALL things through Christ who gives me strength, He has also promised me that if I wait upon Him, He will renew my strength, I will mount up with wings as eagles, I will run and not grow weary, I walk and not faint, if I can only learn how to wait upon Him and trust Him to be my all and all.

Before I sign off I do want to let you know how Luke is doing. I did end up taking him into Urgent Care on Sunday, the Dr. there thought he had pneumonia, but I'm not sure because his x-rays are always cloudy looking. He is doing better, tonight being the best night he's had in a long time Praise God. I promise to sit down again soon and post some pictures from Luke's birthday party and give you some more details about all Luke's appointments he has scheduled for next week.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Annie, her blog is posted to the right, she has been in the hospital for about a month and desperately needs a touch from Jesus today.