This has been quite the week! I'll be very honest with all of you, my dear friends out there in blog world, this has been a week of real highs and lows. Going to the hospital after being up all night long with Luke on Friday night was the hardest time I've had in a long time. I did not want to go back to that hospital until I could take Luke in there walking and saying "thank you" to all the great nurses and Dr.'s there, for there part in his healing. It's hard for me to except at times that Luke is what they call a "special needs" child, I just don't see him that way, I guess I think of him the way he used to be and know in my heart that God will make him that way once again, but in the mean time, I think many people think I live in a dream world of thinking that he will walk and talk once again. It's so hard for me to hear the Dr's and nurses say that they expect him to get sick and end up in the hospital at times. I was so relieved when his X-rays came back looking great and the tests they ran came back looking good as they would rule out one thing after another. I was hoping to make it through his time with a trach, without an infection, but I guess that just wasn't possible. I was so thankful that one of our faithful nurses was able to come work on Saturday night so that I could have a full night of sleep, because I desperately needed it.
Monday was also a hard day for me. I took Isaiah in to the Dr to have his ear checked out and found out that it was not doing any better, though today I think it finally is doing better. During that Dr. visit we had to have Lily's PKU blood test redone because the last one they did didn't take for some reason, so it was very stressful listening to her scream while it was being done. It made me wonder if this is what Luke would be doing while they were poking and prodding him on Saturday to get an IV into him. It kills me when I hear a nurse or Dr say how well he is doing during this time just because he can't make any noise, if they would only look at his face they would know that he is crying inside. That day was spent on the phone with Dr.'s and nurses as we scheduled his G-J tube change and his medicine changes. Then running to the pharmacy to pick up the medicine.
Tuesday started out early after only a few hours of sleep. Luke was once again poked for an IV, I was furious when two different nurses tried to start one in his hand and ankle at the same time. Once again one of the nurses commented on how well he was doing, inside I was screaming just look at his face, as tears just ran down my face. He did do well and slept most of the day off and on after the procedure was done. As we went to the Pulmonologist office that day I was trying so hard not to get my hopes up that the Dr. would say that we were close to getting ready to get his trach out. I left there with some hope in my heart that perhaps it would be within a month or so. He is doing so well with his passy muir valve and his oxygen levels seem to rise when it is on. It is so good to hear him making noises once again, it seems that when he does he surprises himself and gets such a sweet look in his eyes.
Wednesday I decided that he needed a day of rest so I took advantage of his message therapy appt. with my good friend, Brooke, to say that I needed it is an understatement. Luke did great eating 7 bites of applesauce and cereal at his first meal, 5 bites at his second feeding and 7 bites at his third this is the most we've gotten in to him ever.
Thursday, morning I was so excited when I picked him up out of his bed in the morning, he actually picked up his head off my shoulder for the first time since the accident. We took him into his EEG appt with high hopes that we would find out that he doesn't have any seizures, only to be disappointed because it looks as though perhaps he is having some. I just couldn't stop the tears flowing all the way home, it just seems to be taking so long to have God heal him, though I know that He is doing the healing in His timing, I just wish that it would happen today! Just to let you know that I hate to cry in front of people, I guess it's just the part of me that says Sue you have so much to be thankful for what are you crying for. I ask myself why am I telling you all this, and I guess it's because I want you to know that though at times I appear to be so strong actually I'm weak without the Lord's help to make it through each and every day, I would sit in a corner and cry all the time.
I find it interesting that on the way to the hospital on Saturday morning, on the way to hospital on Sunday afternoon and then on the way to Isaiah's Dr.'s appt. on Monday and once again on the way home from Luke's EEG on Thursday the song Blessed Be The Name Of The Lord was played or talked about on the radio. For those of you that have been following the blog all along, you might remember that Gordy mentioned that song last October as ministering to his heart. I'll be truthful, I didn't want to hear it at those times this week, because I didn't feel like singing Blessed be the name when the road is full of suffering, because this is exactly what my heart was doing was suffering. I know that God is taking us down this road to teach us how to trust in Him with all of our heart and not to lean on our own understanding, in all of our ways acknowledge Him and He will make our path straight. Prov. 3:5 &6 It is so hard, but I'm eternally thankful that God has spared Luke's life and He is bringing him back to fullness in his timing. Below are the words of the song once again. I hope you enjoy it.
Blessed Be Your Name
(Verse 1)Blessed be Your Name, in the land that is plentiful, Where the streams of abundance flow, blessed be Your Name.Blessed be Your Name, when I'm found in the desert place When I walk through the wilderness, blessed be Your Name. Every blessing You pour out I'll turn back to praise, When the darkness closes in, Lord, still I will say,
(Chorus)Blessed be the Name of the Lord, blessed be Your NameBlessed be the Name of the Lord, blessed be Your glorious Name
(Verse 2)Blessed be Your Name, when the sun's shining down on me When the world's all as it should be, blessed be Your Name Blessed be Your Name, on the road marked with sufferingThough there's pain in the offering, blessed be Your Name Every blessing You pour out I'll turn back to praise When the darkness closes in, Lord, still I will say
(Bridge)You give and take away, You give and take away, My heart will choose to say, Lord, Blessed be your name
Matt Redman & Beth Redman© 2002 Thank you Music
May God give you a blessed day and I hope that we can all say "we are thankful for his goodness to us today."
Love in Christ,
Luke's Mommy Sue
15 comments:
Grace and peace to you from Nepal. While you sleep you are being prayed for. While we sleep He watches over us. God really does work the night shift and every other shift too!
Grace is grace because it's undeserved, and we need grace! Thanks for being honest... we need more of it, and the freedom that results. Grace isn't for our "looking good", our smile, our "being strong". Grace is for us when we're hurting, when we don't want to be, when we're lonely, when we're confused, when the tears are flowing.
Grace to you... and to me, and to each of us, from the heart of God that is so much bigger than we know. "He is near to the broken..."
-Love, Uncle Tom
Thank-you so much for sharing your heart. I have checked in to see your blog every week or so since the accident and Luke is often on my mind. I enjoy reading the updates and praying for Luke's healing. I live 2 hours north of Victoria on Vancouver Island, in Nanoose Bay. It was interesting to read of Luke's oxygen treatment in Victoria.
Bonnie Moody, mom of 8
Dear Sue and Family -
Thank you for trusting your extended family with your anguish. We are here to support you in prayer and in thought, and hearing that you need us still reinvigorates us in our efforts on Luke and your family's behalf.
There was a story today in the Seattle PI about a woman who is regaining her memory and her ability to speak 20 years after being hit by a drunken driver. Although I pray many times a day that Luke's healing will be much swifter, I know you will be overjoyed when he is restored whenever God's miracle becomes evident. I pray every day that you will feel God's strength holding you up, and that you will be bouyed by the support of all of those praying for you all when the enormity of your situation makes it hard to sense His loving and constant presence.
From an outside perspective it seems that God is working toward Luke's healing in wonderous small miracles. I live to read about them daily and weep with your highs and your lows.
Lukes story has started a constant hymn in my soul and sparked spontaneous prayers throughout the day. I hope the thread of that tune reaches you in some way.
With much love, and constant prayers to you and yours from a faithful reader.
PS - In my dreams I too see little Luke playing and dancing once again.
We are having some health challenges and I have to tell you that your blog and continued faith are so uplifting. Each time I begin to doubt God's work I come back here and am reminded of what faith really means. Faith all the time, not just when things are going well.
Thank you for all that you give. I pray that you will have a day full of peace.
Kind regards,
Kerrie
We are having some health challenges and I have to tell you that your blog and continued faith are so uplifting. Each time I begin to doubt God's work I come back here and am reminded of what faith really means. Faith all the time, not just when things are going well.
Thank you for all that you give. I pray that you will have a day full of peace.
Kind regards,
Kerrie
Dear Sue, as I sat here and read I cried... I agree with what everyone else said ... when you are weak God is your strength. I am so thankful for what "auntie cindy" said and feel her love for Luke and all of you. I can not imagine your pain as they kept poking Luke and how you ached for him. I too, do not understand the hospital's attempts at "getting" IV's (when Wyatt was in, in Dec. it took over 5 times to finally get it!) they too kept saying... he is doing so good! UGH. I know you already know this but it is okay for you to come here and share with all of us your heart. We LOVE you and your family and feel so connected. That is what family is for... to rejoice together and to cry together... and we have shared both with you and will continue to share both with you. I too, when I wake in the night or can not sleep pray for Luke. I am so thrilled that the pasy muir is doing well. Also, for his eating.
I love the song "Blessed be the name of the Lord" and YES I do remember Gordy mentioning that and EVERYTIME we hear it on our christian radio station (or our cd we have) I think of all of you and Luke and I say a quick prayer....
I do have a question... hope that is okay.
So what does the pasy muir do? I am sorry I did not understand.
Also, when Luke makes noises now and surprises himself (that is so precious) is that b/c of the pasy muir?
thanks so much for sharing and please know that we want to know whatever you all are facing... and thank you for being so transparent.
Like I said we have a great love for all of you... for sweet Luke.
We know God is working... and we are trusting.
May the creator of this world... give you HIS strenght today and pour out HIS grace upon all of you.
Your Georgia Friends,
Billy, Teena, Michael, Mandi, Dakota, Alyssa, Wyatt & Wesley
Bless you Sue. I just wanted you to know that if I was in your shoes I would feel exactly the same way about my little boy. I would never give up hoping and praying and believing that one day my baby would walk and talk and express again-and we support you guys in that. One day you will look back on the path that Goda has lead you through(trust in the Lord and He will direct your path), and wonder in amazement how you were able to walk through. But you will see how God has lead you through things you would have never been able to face alone.
Here is just an encouraging story. My mom works with a lady who is in her late 20's early 30's. She is actually a radiology technichian at St. Joes Hosiptal-her name is Kris, maybe you could meet her someday and ask her some questions about it. She drowned when she was two and was in the hospital for quite some time and was actually in a coma for a month. She was braindamaged and she had to re-learn how to walk and talk, everything. But when you look at her today you would have no idea that she was that way as a child. She has two children of her own now. Anyway, I know that those stories can be encouraging at times and I thought that I would share it with you. I don't have any more details but if you would like to know more you can email me at chrisandjenni@gmail.com
Bless you! Jenni Burns
We know that it must hurt to watch your child go thru all those tests and pokes and prods, but it is ok to cry.
Someone once told me the tears are what washes away all the pain and that God sees every tear we shed.
We are so thankful that you share your heart as it helps us to have direction in knowing what and how to life up you and the family.
And thanks for letting us lift you up when you feel weak. Our God is an awesome God and I like you wish our time was his time instead of the other way around. But he still continues to give us hope.
Hang in there and we will pass the kleenexs when you need them.
Sue, thank you for sharing your frustrations....You have every right to be frustrated. You are only human and by letting go of the pain God will be able to build up your strength again. I always imagine what you are all going through as I read the blog. I pray for Luke and then I pray for your family to have the strength to endure whatever challenges you are facing. I want to thank you for sharing your pain becuase, I'm sure all of who read the blog know that you deal with it on a daily basis. It was also nice to here Aunt Cindy feelings about Luke. Luke sounds like he is such a lucky boy to have such a loving and caring family....Keep the faith!
Love,
Colleen in Des Moines
Hi Sue and all the family-
You have all been in my prayers since I heard about Luke. I know how you feel Sue when the nurses or doctors have to place an IV in your child. My son had to be placed in the hospital 2 times with an unknown problem. He would run a high temperture and would turn into a listless ragdoll and be unconcious. All of the poking and proding that they had to do to find a vein to get fluids back into him turned me inside out. I prayed that they would just do it to me and in turn my son would be better. I remember the last time we went through this he ended up with IVs in both ankles and in his hands. I held him most of the night. The nurse came and helped me put him into bed and I fell asleep with my hand on his back. He woke up the next morning like nothing was wrong and was walking around like a ballerina on the boards that were strapped to his feet. Just know and I am sure you have heard this before. "God does'nt give you more than you can handle." Just know that you and yours are always in many hearts and minds. We are all praying for you. My son now is almost 24 years old and is fine. We never figured out what was wrong. God does do miracles. :)
Sue - I have been reading your updates, and I understand so much the wearing, long days, dreams broken, hopeful dreams still in the future, and then all the "negativeness" around you. Don't give up. Luke is totally in God's care, and God will continue to show His workmanship through him. If you read our webpage of Jessica, our daughter who had two open heart surgeries, we were in many of the same situations. At first we were told she'd live days, then weeks, months, then "maybe" if she makes it to one year they can do surgery, then we got to surgery, spent 10 weeks in ICU, and the 2nd surgery they only gave her a 40% chance of making it. She made it! Then we were told she'd need surgery every 3-5 years. It's been 7 years since surgery, and so far she doesn't need surgery yet. God is good, and faithful, and yes, as we sometimes don't want to hear, will give us only what we can handle. Even the tears as we breakdown in the car on the way home from the doctors appointment. HE IS THERE! Thank you for your comments on my blog/journal. You have been a sweet friend, and I have appreciated your encouragements these last weeks since our son's death.
Your sister in Christ, Loni
Dear Sue,
Since I do know what you are going through, as we struggle and fight our way down this path together, my heart broke at your sweet and courageous honesty. Keep seeing him whole, refuse to see what others see..he is counting on your eyes of faith. Christ came to bind our broken hearts..to Him, to each other, and back together again. I know how hard it is to see him silently suffer, but I also believe to the depths of my soul that he is never alone, and that God's grace attends every second. You are such a blessing to me...one day we will praise God together as we watch Abbie and Luke run and play. "I would have despaired unless I had believed that I would see the goodness of the LORD in the land of the living. Wait for the LORD, be strong and let your heart take courage; Yes, wait for the LORD>" Psalm 27:13-14
Much love and hope,
Tiffany
My heart goes out to you. I'm sure you're familiar with the 'Footprints' poem. I'm praying that God will enable you to feel His presence, nestle down into His hands and arms, and rest. One 'exercise' you might try (it takes two people or groups): Read Psalm 136 aloud alternating with one person (group) reading the first part of each verse, and the other person (group) reading the second part of each verse. A Bible study partner and I did this once. It got through to me in a way I had never quite gotten before that "His love" really does endure "forever."
Sue and Gordy, I've been following Luke's progress since the accident. I wanted to send you a link to a story I just read this morning that I think you both will find amazing. It is about a brain-damaged girl who, after 20 years, has begun speaking to her parents. Please read the story. Here is the address:
http://story.news.yahoo.com/news?tmpl=story&cid=519&e=1&u=/ap/recovering_woman
Copy and paste that...it's a story on Yahoo. If you have any problems getting to it, feel free to email me for a link.
concernedtxn@aol.com
Cindy in Texas
as a mom who is struggling right now, I marvel at your strength (although you may not feel it at times!) and your faith. You are truly a testimony to God's love.
Bethann in NJ
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