Thursday, November 01, 2007

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

11 comments:

Anonymous said...

{{HUGS}}
Love, Cindy.

Anonymous said...

Loved all the photos.....the children are growing up! Please know that we continue to hold you all up in prayer.....God hears and answers. Hope to see you soon! Love you all, Auntie 'n Uncle

annb said...

I'm so sorry you've had such a difficult time. It is hard, sometimes, to feel God's presence even when you know He's there! Your children are beautiful and the way they handled things to help you out is certainly a testament to you as their mother! Children do not automatically become loving, thoughtful beings without great parenting skills! Even when you have a down day, please know that your honesty and willingness to share your struggles are a blessing to me - and I'm sure to others! This world is not always rosey, nor is it always friendly! God knows your heart and your prayers to Him do not go unnoticed as was shown by the "stroller gift". As always, I will be praying for Luke and for your family. I will say an extra for you!
In His Love and Blessings,
annb

Kehau and Brandon said...

I can so relate to this blog. All that you are feeling now is exactly how I've been feeling...well, the other night. As you can see on my blog also. But your blog does encourage me even when your spirits are down. I guess because it reassures me that we are all human and that I'm not the only one feeling the way I do. Plus your outlook on it all is so uplifting! You're a trooper with all those pictures too! It always takes me forever to get pictures up. How do you put it on the part where you write. I couldn't figure it out...well, thank you for sharing your heart! We will keep you in prayers as well as your precious little Luke.
Blessings,
Kehau, Caleb's mommy

Anonymous said...

{{Sue}}~
I will be praying for you that God will renew your joy and your strength quickly. After such a great week last week, this one probably was quite a letdown - and it's quite normal to feel the way you do. I know that these down times draw us closer to Him, so that we rely completely on Him. Be encouraged - you're faith and hope in the Lord are not in vain. The doctors are seeing Luke through their reality now. You're seeing Luke through God's eyes and what will be someday. I hope Luke's congestion has cleared up and you will all enjoy some peaceful rest.
Love, Jeri

sherryandkaty said...

Sue, I haven't commented in a while, but wanted to let you know I am still praying for Luke, and have a link to this blog in my Katy's blog header. I've had a few of my readers tell me they've been praying for Luke. When I am having an awful day with Katy (she has Fragile X which has caused Autism and mental retardation, she's an 18 month old trapped in a 4 year olds body) God will bring Luke to my mind and I can stop and pray. That calms me, and makes the storm seem less like a hurricane. I pray for you often.

Tammy and Parker said...

Hugs~ I understand your heart completely.

Teena6 said...

Sue, I think of you often, continue to pray.... I know it has been three years and Luke continues in our hearts...

I am praying for you too~ God has truly touched my life with the testimony of yours. I too, pray for Luke's complete healing.

I can not imagine how difficult it must be at times and tiring.

Have you ever heard the song....
Give me Jesus~
it is by Fernando Ortega and also Jeremy Camp sings it. You can pull it up ...the tune is beautiful.

Also, I love the new song by Nicole C. Mullins....
Touched. it is awesome. I am praying.... that Jesus can give you strength daily as you walk this journey.

Give Luke hugs from us~
This weekend is IT!! Wyatt & Wesley will be the ring bearers. I rememember Isaiah and Zeke were too....once. Our Alyssa will be the flower girl. This week is a little stressed..with preparations but I am really trying to relax.

You know I wish we could just sit at the park, talk while the children played. I would drink a diet rite.... what is your favorite? :)

May God give you HIS strength.... His mercy.... His grace.

our love
your Ga friends,
Billy, Teena, Michael, Mandi, Dakota, Alyssa, Wyatt & Wesley

Anne Schlegel said...

I was just finishing my prayer time this morning, and wanted to let you know that God is thinking of you right now. He's got you right where he wants you to be...clinging to Him. And that, without a doubt, is the BEST place to be. I will continue to pray for you all.
In Him,
Anne

Carmichael Family said...

We are praying for you guys!!! Bless your heart, dear Sue. What a difficult road it seems you must travel at times...but remember, God is right there with you (Psalm 23:4).
You bless me so often with the encouraging comments you leave on my blog and the prayers I know you are offering on behalf of my baby. It was especially encouraging when I was worried about being on my own with the little ones for the first time since Nolan's birth, and you left the comment with Phil. 4:13 I believe it was, and I realized, wow, you know more than I most likely ever will what it is like to have multiple little ones to take care of, one of which requires special/extra care. It definitely helped me head into it with the right attitude.
Praying for extra strength and grace for you!
Catherine and family

Syndy said...

Hello,
I started reading this blog when Lukes accident took place I missplaced the address but just kept Luke in prayer. A few months ago I saw the person who had given me the info about Luke but she had lost touch with your family too. Today I was feeling down, reading Joel Olsteens book about giving of yourself and how others had troubles more than yours and when I checked my email tonight I found the blog back! I am so delighted that you have continued the blog and that things are improving in your lives. I will continue to keep you all in prayer. I am so proud of you and your family for working together to help Luke. What an exceptional family. Gods blessings to you all. Syndy