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.