Still hanging on for Dear Life to what seems like a never ending Roller Coaster Ride

I continue to be amazed at how last week could be so very awesome and this week so very hard. Luke has been doing so well, making huge steps toward recovery. I was just saying today to the Speech Therapist he has eaten more orally in the last week, then in the total of the last 3 years. I realize that sounds like he is eating a lot, but for Luke a lot is 3 whole jars of baby food, plus some other tastes. But to be honest I wish he was eating all his food by himself.

Tuesday was a hard day for me. It began with Physical therapy, then on to Occupational therapy, took Luke grocery shopping, got home just in time to help get the home ready for company that night, Luke's old nurse Mary came over for dinner. Then we were off to his Pediatrician appt. I decided after hearing his alarms going off every night for weeks, because of his heart rate dropping I better ask the Dr. just how low should we let his heart rate get before we become concerned. It has been getting down in the low 50's some nights. He requested a EKG to be sure his heart is okay, which turned out normal. The Dr. said as long as Luke's oxygen numbers are good, we shouldn't be too concerned about his low heart rate.

I guess what made this day so hard was the fact that everyone that day felt like they had to give me a reality check on Luke's life. Letting me know once again, that I really should be thinking about ordering him a wheelchair. Also discussing the fact that they don't think knee orthodics would benefit Luke, in fact they could cause him to break a bone, because children like Luke are prone to broken bones. Thinking about the future of communication devices for Luke. Then his Dr. told me that Luke doesn't qualify for a Make a Wish trip, I guess there was a small part of me still thinking because I know of so many other children just like Luke that have gotten to go that perhaps he would get a "Wish". I don't know why, but that really devastated me. None of these things are negative things I realize, except for the fact I left those appts. wondering if I'm just living in a dream world about thinking that God is going to heal Luke someday.

Here's some real honesty for you, Tuesday night I spent about an hour on my knee's literally crying out to God letting him know how tired I am, physically, emotionally and spiritually. Asking God for forgiveness because there are days when I'm just not sure if I have the stamina to continue on this journey we are on, wondering if I really have the faith to believe that Luke is going to be healed. Usually I go to bed with some resolve to know God has heard my cries, but this night I finally fell into bed around 3:00 a.m. not feeling any better after my time of great pleading to God. I woke up Wednesday morning not wanting to get out of bed, can you say great depression had set in? I finally dragged myself out of bed knowing that I needed to get Luke into the tub and fed, as I was already running way behind on the day's schedule.

Halloween has been very hard these last few years. I don't have any stamina to get my children dressed up in costumes for our yearly harvest party at church. Once again if not for my wonderful girls this year would of been a total flop for our family. The girls not only fed the kids breakfast, but made sure they were all dressed and did school with the boys, when they finished with school, they carved the pumpkins that we got a few weeks ago. They got the kids ready for the party, then ran over to the church to help get the last minutes details done before the children arrived. I did end up going with Luke, who was dressed in a lion costume, I know that he really enjoyed himself as did the rest of the family.

The pictures tell a story about a Lady named Natalie who thought she was a princess for the night, Luke her Lion pet growled to scare off her Jester Isaiah and Clown Ezekiel. Lily who spent the evening as a little "Lily Bug" was the cutest little bug, you ever did see. Daniel's girl friend Kristin saved the day dressed up like Super Girl and then last but certainly not least Amy helped plan and put together the entire party with her Aunt Cindy. A good time was had by all!


Ezekiel was very persistent in bobbing for apples and as you can see it paid off in the end.

Today was a bit better, I woke to an e-mail from Luke's PT saying that someone she knew was giving away an Adult size special needs jogging stroller. That was great news as I was just pricing them the other night at over a thousand dollars, thank you Lord for your provision. The night ended celebrating Ezekiel' s 7th Birthday, with a party at Chuck E Chesses. A good time was had by all, though Luke seemed to be congested the entire evening and came home with his first fever in over two month's. I'm praying that it will be gone when he wakes up in the morning.

I'm so encouraged by your sweet comments and often don't feel worthy to live up to some of them. Thank you for your continued prayers and support, I'm confident to know that God will renew my strength once again and encourage me as He always does, please join with me in prayer that it will happen quickly.

Love in Christ,
Luke's Mommy Sue