Tuesday, April 26, 2011

Fear often brings you to forget those things that you know are true, I'm trying so hard to not let fear overtake me these days

I hope you all had a very blessed Easter, we sure did: -) As you can see from our annual Easter kid picture Daniel and Sarah were not with us this year, they spent the day with Sarah's family. We missed them but understand that's part of married life, splitting time between two different families. Luke had a good day until the evening and then things turned rather quickly to being a horrible night. We're not sure if he was allergic to one of the animals that he came in contact with that day, first of all bunnies at church, then a dog and cat at my sister's home where we went for Easter dinner. He was so "junky", we had to constantly suction him. But we know it's not an infection we are dealing with as his secretions do not have any color to them and he is not running a fever.
It would be so easy to give into fear at this time in my life. In fact I've been dealing with a lot of fear since I had that phone call from Luke's pulmonologist on Friday afternoon. My eyes seem to be watering constantly, for someone that really doesn't like to cry it seems that's all I've been doing the last few days and nights. I know that fear does not come from God and I've been praying like crazy for God to take it away. I was blessed to go to a church meeting tonight and the evangelist that was speaking was speaking right to my heart, this was about the first thing he said, "fear often brings you to forget those things that you know are true." That is exactly what fear has been doing to me the last few days, it has made me forget that nothing is impossible with God, that is so easy to say but not easy to live out when you live with child like Luke. Another thing he said was that "delays are not denials," thank you God for reminding me once again that your timing is perfect.

I know that many of you out there think I'm crazy to continue to hope for a miracle healing for Luke, you think that I'm living in denial to except what has been dealt to our family. I've spent quite a bit of time in prayer the last few days and once again I have completely surrendered Luke into God's hands, I know that God loves him so much more than I could even begin to imagine, because He loves with a love that is so amazingly HUGE and wonderful, a love that would give His one and only son to die for our sins. His sacrifice was so awesome and wonderful, something only God could do, therefore I know that Luke is loved more than my mind can comprehend. I realize that I can trust God with Luke's life, even if that means he wants to take him home to heaven.
Once again I'm going to be bluntly honest with y'all, I have often wondered if Luke would be better off in Heaven. You see I know that heaven is so amazing and I've read a few great books about some people that have gone to heaven for a short period of time and had to come back down to earth once again. All of them without exception were not happy about coming back to earth, they loved it in heaven, the peace and joy they felt there was uncomprehensible to our human brains. I know that if Luke were to go to heaven tonight he would be whole once again, he would be able to run, shout and sing praises to Jesus, he would not be lonely because he has 3 siblings that I miscarried there that would join him, along with my sister Jenny who also drowned when she was 17 months old, along with Grandpa's and Grandma's that have gone on to glory. That said, the thought of him dying and going to heaven causes me so much sadness and grief I get really selfish and know I'm not ready for him to go yet.

Some of you may be saying Sue get a grip, it's not like he's on his death bed and you would be right, he's not but he is so fragile right now another pneumonia could easily put him there so quickly as his Dr. reminded me last Friday afternoon. Here's a little more honesty for you I also know that life without Luke would leave a gapping whole in my heart, but it would also take off a huge burden in my life. Does that sound selfish? Because it feels selfish saying that out loud. For those of you that don't deal with what we deal with on a yearly, monthly, weekly, daily, hourly, minute by minute, second by second, day after day can't even begin to imagine what it's like to have a child who can do nothing, absolutely nothing for himself. He is unable to move, talk, walk, go to the bathroom, take his own bath, feed himself, then you add on top of that the monitor that he is on each and every night that alarms off and on, on top of all the appointments, on top of the fact that we have to make his formula, which is a huge process, on top of the fact that we have major medical bills to deal with, on top of the fact that only a handful of people are able to watch him, on top of the fact that he almost weighs 50 pounds, which is so hard on our backs, you get the picture.
I just want to be perfectly clear when I say that I'm so thankful that we have Luke here today. He blesses me in ways that most can not understand, he is so cuddly, I love his precious smile, I love the way he yells when he needs something, he has brought me to a place in my walk with Christ that I can't even begin to explain. He has given me a new appreciation for things that most mom's take for granted, like dirty muddy clothes to wash, clothes that wear out from use, constant questions, dirty dishes to wash, floors to mop after spills, toys to pick up off the floor, being asked for specific toys at Christmas or on their birthdays, I think you get the picture.

Once again please understand Luke is not on his death bed tonight, though he is struggling tonight with his secretions, causing me to sit here and write this out in the middle of the night, or perhaps I should say early in the morning, as it is currently 4:15 am. I'm exhausted and as soon as I sign off I'm going to go to bed and let Gordy know it's his turn to listen to the alarms for the rest of the night. God is my strength, He is the only reason that I can go on day after day, He is the only reason that I'm able to find any kind of peace on this journey. I can't imagine how difficult my life would be without God right by my side, I'm so blessed to have such a wonderful Father, who carries me when I don't think I can go on another day. I feel like a broken record, but once again I'm asking for your prayers, prayers for Luke' s lungs to heal, prayers for Luke to start talking again, prayers for him to begin to walk again, prayers for strength to get through another day, prayer for the tears to stop flowing constantly, prayers for wisdom in knowing what to do about the trache issue, prayers for sleep and peace, prayers to have our hope renewed, prayers for . . . Thank you and may God richly bless you today.

Love in Christ,
Luke's Mommy Sue

PS I wanted to say thank you for your prayers for my Uncle David, he is recovering nicely from his open heart surgery. I took my parents up to see him on Saturday evening and it was so good see his smile and hear his laugh once again. Please continue to pray for him as he has a long journey ahead of him to recover from his massive surgery.


Michelle said...

Suzi, thank you for your post. Please don't be afraid to write about this stuff. It is what the rest of us think about, pray about, and even at times talk about as well. I'm with you. I know Emily will have a wonderful ever-after but I also fear it will leave such a huge gaping hole in my life as well when she goes to heaven. But our home is not here and that gaping hole will be just one more thing to spur me on toward eternity. I know you have hope for Luke, and I have hope for Emily. Even if she isn't healed here an now, she will be whole forever after in the presence of our Lord because of the blood of the Lamb! This Easter was a great time for me to talk to her about everlasting life. We had a great weekend.
Keep talking, we're listening, and praying.

Michelle & girls

Anonymous said...

Sue ,,, a terrible situation , little Luke is so very ill . the emotional damage to the parents has to be hell on earth , not to mention his brothers and sisters .If the little guy could talk to you , what would he say ? What would you say ? So very tough , I pray daily for Luke , and his family . And for you and Gordy to have a return to normal times ,,,

Jenni said...

Dear Sue, you are a jewel, I love you and hearing your honest cry in the midst of this long and weary journey. We've been following your story since the beggining and you've always looked to the Lord for His strength. I admire your brave and honest, heart as you strive to cheerfully follow Him daily. You are an encouragement to all of us moms, I know that I see what you have been through and I am amazed at the strength God has given you. Thank you Sue, one day our sweet Saviour will receive you into the kingdom and He will say, "when I was naked, you clothed me, and when I was hungry you fed me, my faithful servant, come enter into your rest."

Dear Jesus please give my sister a new dose of hope in You, and strength and for the journey she has ahead of her today. Bless you my friend, I love you!

Anonymous said...

Hugs Sue -- You have been on such a journey -- many happy times as well as the very difficult times. I never knew you had a sister who drowned as a toddler; that is so sad, and must have been extra hard for your parents, when Luke went through his near drowning. I have been following your blog since the beginning -- I believe it was a co-worker of your husband who posted the news on another board I follow. I am not a very religious person but think of Luke and your family often. (((Hugs)))

A faithful reader in CT

Teena said...

Oh Sue... you are right I have not walked in your shoes. I can't imagine... but praying that God washes over you....

Praying Luke's lungs heal... praying and interceding for you.

much love,

kelly said...

Sue, I do not even know you, nor do I have a child who experienced a near drowning. I wish I could meet you...your faithfulness and honesty is inspirational to me. I pray for your situation often. I have 2 children with differing medical issues...NOTHING to the extent of Luke's...and I find myself exhausted and sometimes giving myself a pity party when I think about how different our family member's lives would be if only we didn't have these things to deal with. Frustration at family and friend's who don't "get it." And then I read your blog and realize how easy I have it. How many things our family IS able to do. How appreciative I am for getting a good night's sleep on most nights. I honestly don't know how you do it....well, I do...only through God. The burden you carry is great and my prayers for Luke's healing and for strength for you will continue.
Wishing you peace,


Kate said...

Oh, Sue, I don't think anyone who's followed this blog for long could ever think ill of you for writing these things!! You are a wonderful, amazing, dedicated mother, and Luke (and all the others) are so blessed to have you!! It's natural to want to keep Luke here because you love him. It's equally natural to consider the joys that await him in heaven, and there is nothing wrong in acknowledging that you are tired!! You've carried such a burden for so long, and I am so proud of you.

Like Michelle said, keep talking. We're your friends and we are here for you no matter what you need to say! (((hug)))

Lori in KY said...

Sue, I can so relate! When my baby girl when to heaven, my feelings were such a mixture of emptiness (completely bereft), grief, anger, and relief for me, and joy for her that she was whole and comfortable again. Those feelings brought such guilt at the time. How could I be "relieved" that she was gone to heaven and now I could sleep more than an hour at a time? How could I feel "joyous" that she wasn't in pain...she was DANCING before the King of Kings? Grief (whether it's while she was living or after she died...because I DO believe we grieve while they live for what "could have been.") doesn't have any rules. There isn't a guidebook that tells us how. No right or wrong way. Processing all the emotions associated with a child with so many needs is such a roller coaster ride, and there is no guilt in wishing things were better for you OR for your baby boy. Good for you for being honest...I needed people to do that when I was coping with these feelings 16 years ago. Wish the internet community had been available then. Hang in there. I'm praying for you and Luke.

Anonymous said...

Sue, What a beautiful blog. We continue to pray. So glad God led you to that prayer meeting that night and ministered to your Spirit and refilled you with His strength. It really made me emotional and choked up all that you wrote. Even those of us who don't deal with exactly what you are dealing with can understand exactly what you are saying. I love you ! Mary

Donna Blain said...

Dear Sue, I read about Luke for the first time tonight. I have been following Kate Estes blog on Noah for almost three years, and tonight as I was reading the latest, I noticed Lukes name and the reason for the requested prayer for him. I clicked on his name and read your latest blog. I just wanted you to know that I will be praying for you and Luke and all of your family! I also want to tell you what a blessing your transparency about your feelings was to me and your love for our Lord and Savior Jesus Christ! When I read about families such as yours and the Estes and the stength, peace and courage you all have, it increases my faith that our God is ALIVE and WELL! How could anyone keep going with all the hurts, problems, exhaustion, and hard work you go through on a daily basis, without HIM? And the praise for God that is on your lips and in your hearts is so awesome and such a blessing!! God bless you and keep you as you keep on keeping on!! Love, Donna Blain

24/7 MOMS said...

Sue..love your openness and honesty

Thanks is all I really can say