Monday, October 4, 2021
Thursday, August 19, 2021
Well another anniversary has passed...thank you for your emails and messages. In some ways it's seems like it's been like this forever and then other times like the accident just happened. I still can not believe this happened to our daughter, our family. Thank you for your prayers.
This has been such an awful week for the world. The terrible situation in Afghanistan, the earthquake in Hait, so many Covid deaths and illnesses.... the other day a friend of mine said that it feels like the world is on fire. I agree there is so much heaviness and uncertainty for so many people. There is just no other solution but God. This world is beyond help-I can't really see things changing overall for the better at this point but.... I believe Jesus is coming.
I'm not one of those date setters. That's crazy and wrong. But I feel the whole earth is on the cusp of eternity. Eternity seems close at hand. In all honesty even if you personally live to be 100 years old, you're still facing eternity. All of us are, there's no way to physically live forever on this earth.
So in my heart I can't help but think soon this all will be over. Soon we will stand before the King of Kings. It may not be in 2021 but even if this old world keeps turning for each of us individually it will not be long.
What matters is to stay close to the Lord, keep your family close, do good for others, reach out and help the hopeless. Because when it's all said and done, what else will matter? Only our relationships and those we've reached out to.
Right now as I type this I know a family that is saying goodbye to their loved one. Thinking about things like that puts other things into perspective! Live for God Love Others!
Sunday, August 15, 2021
Today Saturday is Selah's 17th birthday. This makes her, Sam and Shad all the same age-17 for about a month until Shad's birthday. It is a day that is bittersweet because it is the day before the accident....
This picture was taken on the night of her 8th birthday just hours before the accident happened. We had been running all day. We were in Rochester NY for Sam and Sarah's eye appointments. Sam was there for a follow up and Sarah was there to see if she would be eligible for the eye implant. Sarah and Sam both had exams under anesthesia that morning starting at 6 am. It was a long day. We had supper together as a family at the Ronald McDonald House because it was really bad weather and we were exhausted. I had gotten Selah some toys and we planned to go out and eat the next night following Sarah's MRI.... that never happened. By that following night Sam and Selah were in the hospital following a near drowning accident. He was slowly recovering and Selah was fighting for her life....
Tomorrow around lunch time it will be 9 years.....that's so hard for me to wrap my mind around. Nothing has broken my heart more than this situation. It's like an open wound. Selah is here but yet she is not.... what a strange life we live. People tell me that we "make things look easy" and I get it...it's now our "new" normal. But it is so hard. The pain and heartache is always there.
Selah has done much better than initially expected. She's been home for 8.5 years. "They" all the experts told us not to bring her home. They actually offered us a "way out" a few days after the accident when it was obvious she was never really coming back. The doctors told us we had the choice whether or not to give her a trach and/or a g-tube. If we did not give her a trach (she was breathing over the vent but not swallowing her saliva good) then she would get pneumonia and "nature would take it's course" Or if we did not put in a g-tube she would slowly starve to death and again "nature would take it's course" As you can imagine we were absolutely horrified. We told them one day we would have to stand before God for the decisions we made and we could not do that in good conscious. Selah breaths on her own and is not brain dead. She is just in a "light coma' or minimally conscious. At times she is aware of us like an infant would be. The trach keeps her from swallowing her salvia and it's an easy way to suction extra fluids out and that keeps her lungs clear. Thankfully Selah is not in pain but does respond to pain. If she is uncomfortable she will cry or what's even better is get a mad look. I love to stroke her hair and she hates for me to do it. If I started doing it she frowns and it reminds me to stop (all my other kids love it) She does have a tiny bit of purposeful movement.
She's stayed very healthy overall and we attribute that to her nurses. She has had the same three nurses almost since the beginning. They work as a team to keep her healthy. In fact she has not been in the hospital except for a surgery in 8.5 years which is unbelievable for a child like her with all her special needs. Again it goes back to the consistency of her nursing care. We've had other nurses come and go for various reasons. Most of them go for negative reasons. It's been challenging. I could write a book on what I've had to deal with between insurance. our nursing agency and nurses (not our three) it's been threatening to my salvation LOL Right now we have issues so please pray for us to know the right thing to do for Selah's future. We would LOVE to get more nurses as all of ours are retirement age or near retirement age! My hope has been to get a few younger nurses and have our experienced nurses train them. It just isn't working out for several reasons. Please pray for us about this!
Selah needs more advanced care than she did when she first came home. She is beyond our ability to personally care for her. Plus we have Sam and Sarah who are older and have more needs now then they did 9 years ago. Our oldest son has his own apartment and two jobs. Our next oldest just finished his freshman year of college and is taking off a semester but working full time plus. Also Jon and I are getting older and being in our late 50's is a lot different than being in our late 40's plus we've had medical issues. Jon still works as a senior Chaplain and senior pastor. It's a complicated life. To say we worry about Selah and her needs is to put it mildly. While I don't do the day to day physical care, some weeks I do hours of phone calls/paperwork for her. It's hard but I do everything for her I possibly can to ensure she has the best life possible. I try to do everything I can just like I would want someone to do for me if I were in her position. I would fight the devil for her and feel like I have at times!
Around this time I get very sad. The tears are in my eyes....so much... I wish I could turn back time, I wish Selah was healed. I went to counseling for awhile and the psychologist told me that this is not something you "move on from" Basically she was saying if Selah had died, we would have gone through the normal stages of grief but because she survived with all these health issues we never moved on.... I don't know if that's exactly true we have grown and come to grips with the situation. When I hear about near drownings and the child doesn't make it a part of me feels so sad but a part of me is glad the child is spared from this kind of life unless they would have recovered completely. But then I look at Selah and I know it's hard for her. But 98% of the time she is comfortable and content. I have to look for the good. We can tell she loves her room. When we've been out with her as soon as we roll her into her room without fail she gives a big sigh and visibly relaxes. She feels safe and I believe she feel loves. She recognizes people at times. Today we were in her room and Jon was singing to her and she followed him with her eyes the whole time. It was so sweet. She always was a daddy's girl....
It's not an easy life I will not lie. I've been stretched far beyond anything that I could imagine. I live with fear that she won't have nursing or that she'll die. Some things are starting to change with her physically (not for the good) and we don't know what that means. But all in all she has remained healthy.
There are times when I let sadness overwhelm me for a little bit, maybe that's normal. But I've had an extraordinary amount of loss in my life. Life is hard for everyone I realize that and most of the time I don't whine and keep a stiff upper lip. But there are moments I grieve so hard I can't breath. The loss of a child to a near drowning is a horrible thing to go through on so many levels. I have a friend who talks to me about my heart/pain /loss. She tells me I put things in closed doors and go on with life till somehow the door gets opened and then I grieve as if the loss was just a recent one. I guess I do and I don't know any other way to do it.
Selah was such a gift to us. We were going to Ukraine just to adopt Sarah and then we heard about this other little girl there at the same institution. Then we got the picture of this adorable tiny 7 year old. When we met Selah we were so unsure if she would ever bond with us. She seemed so lost. But over weeks of visiting them daily as we wound our way through the court system she began bonding...the day she cried when we left them was gloriously heartbreaking. I hated leaving them every day but the fact she didn't want us to go was incredible. Once we were home this little girl that seemed so autistic and locked in her own mind literally followed me around the house babbling all day and reaching out for me. We had three glorious easy months. I have a sweet memory of standing in our laundry room one night telling my husband that I had never been happier in my whole life as I was right in that minute. Everything we had worried about never happened. The girls fit into our lives like they'd always been with us. During the summer months on Facebook I get all the memories I wrote back then. We were so happy. I felt like super mom and loved having little girls finally! Selah loved for me to dress her up. She would stand in look into our big mirror and pat her clothes. Sometimes those memories just break my heart-I had no idea of what was ahead. But I try and remember at least we had those fleeting times, at least Selah did... we did so much that summer. I'm so glad! But the memories are like knives. Nothing will ever take the pain away this side of eternity. That's my only hope. that's what I hanging on for....
So tonight my post is pretty down. I will never ever get over Selah's accident. Oh I go on with life- I have 4 other kids and Selah to take care of.... I don't have the luxury of running away and curling up in a ball. Even at the time of the accident I knew I could not do that I had my other children looking at me, at us and learning how to deal with adversity. Instead of running away I just ran to Jesus and I still do when my heart is so overwhelmed and sad. Thinking of eternity is the only thing that gets me through this situation and many others. There is coming a day when all things will be made new. There's coming a day when there will be no more death or illness....I truly believe this based on scripture. Our life is but a vapor- it's so short. Eternity is forever. I believe that one day I will look back on this earthly journey and just see the goodness and faithfulness of God instead of the pain. Sometimes I can see that now but not like I will one day. I look back to the day of the accident and the days following and through the pain I can remember the close faithfulness of God. It was nothing I'd ever experienced to that degree in my life.
But tonight I'm just sad-this anniversary is a day i dread every year. The memories are so vivid. It still seems unreal to me after all these years. 9 years.....9 years ago I didn't know how I'd get through the next minute or day....BUT GOD has gotten us through 9 years.
I've been thinking alot about theology lately...I always do... Being a part of a Charismatic/Pentecostal fellowship there's a lot that I love about it. It's my heritage BUT there are things I disagree with and always have. One of the main things is about healing vs suffering. Even before we had Sam I had theological differences with the official stance which is physical healing is provided for in the atonement of Christ's death. The teaching is based on basically 6 words in Isaiah 53 "by His stripes were all healed" That has been turned into a doctrine of physical healing where physical healing is basically as important as spiritual healing and just as readily available. As a young college student I wrote papers about it but never dreamed it would become such an issue in my own life with having three disabled children. As you can imagine my thought process is not welcomed to many and I wonder why if we believe this life is short and heaven is wonderful.... I know no one wants to lose anyone to death. I grieved when my 91 year mean old grandma died. She was a mess but she was my mess and I was not ready to be seperated from her. My father in law was 89 and had dementia and I grieved when he passed away. Walking out of the church after the funeral I felt such a sense of loss even though he'd been 'gone' from us for quite awhile. But we can not make God say something He did not say in scripture.
While I never believe God causes suffering, I believe we live in a fallen world and grief is going to come to us all. But I believe through suffering we learn how God walks beside us. He's not a genie in a bottle that keeps us from every heartache but He is the One who carries our pain and upholds us. While I believe God can do anything and still does some miracles I do not believe we can demand things of God nor do I believe He is going to erase death -not now- there will be a day when death is literally thrown into the lake of fire but that day is in the future. Sometimes I see some crazy things said on FB to folks who are going through trials. I know we had people say things to us that I'm sure they were saying it from their heart but I knew it was not true. We had several people tell us over and over again that Selah would be healed and even her underlying disabilities that she had before the accident would be healed.....even in my heartache I knew that folks were just telling me what they wanted to happen. And sure that would have been amazing.... but that's not what happens. In fact we just got an answer FINALLY about her underlying disability. Seems she has a disarray in chromosome 19 It's all there but every part of it the DNA is in the wrong areas.... If you were to read her DNA it should read something like this "abcdefgh...." however her DNA reads something like this " ryckeisiha" (understand I'm just simplifying it. I know DNA doesn't read like the alphabet) So basically her 19th DNA chromosome is out of order in every cell in her body. That's Selah-unique in every way.....
A theologian who has remained within our fellowship has written some good articles and books about this. When I discovered his writings I felt a lot of peace! I just wish they were required reading! Gorden Fee on Healing maybe this will help you like it did me.
I never know who reads my blog unless I get comments or emails.... but so many people struggle with different heartaches. Trust Jesus with your life and know there is coming a day.... when no heartaches shall come, no more clouds in the sky no more tears to dim the eye....What a day glorious day that will be! I'm looking forward to that day! I'm holding onto the hope of heaven. Not just for how wonderful it will be but we will be with our Lord forever. God has put that longing in our hearts and then it will be totally fulfilled.
I think I started this blog down in the dumps like so many of the Psalms of David start but when I remember the eternal faithfulness of God it lifts my heart! I know this is not the end of my joy or my family or my relationship with Selah. We have all of eternity! What a blessing! What a hope to hold to!
Saturday, August 7, 2021
Last Sunday we had a wonderful missionary that came and shared at our church. I wrote this on my facebook after the service.... ' Being in ministry for over 30 years some Sundays stick out in your mind... today was one of them! Everything went perfect, the music was great, most of our folks were there & we were challenged & encouraged by our missionary Darrell Blatchley.... and our church gave BIG to this ministry that works with thousands of kids & their families weekly in the Philippines! While I was helping with the offering I just started weeping at how God had touched hearts & our church so faithfully responded! That has never happened to me while helping with the book work/finances of the church. I LOVEhow our little country church gives to missions especially to orphans and kids at risk! Grace Church of Zephyrhills Fl We are still just blown away & grateful'
Born to Give by David Grant (you can order it)
I want to share a song with you that I just love.... Honestly for a long time I just rolled my eyes at a lot of the new christian music but lately I've started loving some of them and have introduced then to our church. I think this has become our theme song. This song has a Celtic with a hymn type of sound- love it!
ALMOST HOME listen to it!
By Matt Boswell and Matt Papa
Just think as christians we have one job...if we could just focus on eternity then nothing else would matter much to us. Have you ever, just for a second had a quick understanding of eternity? It's happened to me a few times, it was like I caught this tiny glimpse and in my heart I understood eternity to some degree for that moment but then the moment was gone. We really do "just see in part through a glass darkly" now....but there's coming a day when we will understand. I want to do all I can to ensure others are there with me!
BTW we have another missionary coming this Sunday....
Friday, July 30, 2021
Well I'm not one to shy away from controversial issues....
Covid sucks.... it has killed many-including a relative that I'd just discovered but never got a chance to meet. That has caused me so much pain and heartache! What a loss!!! Right now I know of many in the hospitals and I can't look on facebook without someone posting a death or prayer request for people even younger than me with covid! Back in December Jon Sarah and I had Covid and were very lucky. Jon and Sarah were able to have Bamlanivima (BAM) they recovered immediately. Every symptom Sarah had including a high fever was gone before the treatment finished running! Unfortunately or Fortunately I was not eligible for the treatment since I have no underlying health issues. So I had to tough it out. All in all it wasn't too bad but the exhaustion was like something I'd never experienced in my life. I also have a doctor that prescribed HCQ so I took that when Jon was diagnosed. I only had 14 days worth of it and tested negative until the 15th day. I think if I could have taken it for 21 days I would have never gotten Covid. Somehow Sam, Steve and Shad did not get it although the older boys were home with us during that time. Selah and her nurses also did not get it but we kept her suite door shut and turned off the AC/heat and had all the windows open 24/7
With the recent terrible increase of Covid we checked our antibodies and found that Jon Sarah and I still had the antibodies. Sam and Shad had none. Shad had repeatedly been exposed to Covid but never got it. Our oldest son took the vaccine early on. We made the decision to vaccinate Sam and Shad this past week. Both did fine although Shad did sleep for about 18 hours straight. The antibodies test we took only showed we had a reaction it did not show how high of a reaction we had. So today after prayer and just seeing so many in ICU and all the deaths we decided to go ahead and take the vaccine ourselves. So Jon Sarah and I got it this afternoon. Selah had to be scheduled for Monday because it had to be planned out more.
Covid has been horribly politicized and I think that is awful! The left and the right have used it politically. Both extremes have caused damage and death in my opinion! The left has used it to control and to push other agendas. The right has reacted with distrust and extreme ideas that has also affected people. Covid is real- it's worse than the flu- people are dying.....
The vaccine....I have never agonized over a vaccine as much as I have this one. I'm a pro vaccine mom and proud of it. My kids have been overall healthy as far as regular illnesses go (not the things related to my little ones issues) But this vaccine has become so much more than a vaccine in everyone's mind. To the some on the left it seems to be a badge of honor. To some on the the right it's the mark of the beast..... I'm sure some will be mad or disappointed in us for getting the vaccine. But we have peace about it so it doesn't really bother me!
To be honest, we didn't get the vaccine to protect you- we got the vaccine to hopefully protect our family. It maybe new and it may not be 100% but it's something that gives at least some protection from Covid.
Probably the majority of our close friends/church members and relatives have gotten a vaccine. Thankfully no one had a Covid related reaction that was serious. That certainly helped me!
So if you are like we were-on fence- really look at everything. Talk to medical people you know and trust. Talk to your friends/family who've had the vaccine.... I do NOT think it should be mandatory!
Good luck and stay safe!!!
Monday, July 19, 2021
Well we had a scare a couple of weekends ago. Jon had a "spell" while doing yard work. He tried to shake it off but couldn't and ended up going to the hospital and being admitted for a few days. Everything seemed to be ok and we met our yearly deductible for our insurance lol. But things like that are scary. He got a "get out of yard work" forever card. Evidently after you've had heart bypass the blood flows differently - it was scary and we can only hope they didn't miss anything. There was debate about doing a heart cath and in the end the doctor didn't want to do it. That's really the only thing that can positively tell a heart patient if everything is ok but it comes with risks. So we are just keeping an eye out on everything and if he has any other issues he'll have one. All his other tests came back perfect. The doctor just raved on and on about his nuclear stress test. He did his on a treadmill and got top marks better than most non heart patients. It's all that exercising he does!
In fact we just joined a gym! It has hydrobeds, massage chairs, tanning, and light therapy.... oh it also has work out equipment LOL
Well to celebrate No heart attack.... we went to the beach for the night. For us it's hard to go places alone. First our older kids act like we are abandoning them...you know the ones who go all over the world and leave us? They couldn't believe we'd go to "our motel" without them LOL Then we have to make sure we have child care for the three little ones. Selah has her nurses and Sam and Sarah has their wonderful caregiver Ashley. But Ashley's family owns several businesses so she has to work around that. Also she is not legally allowed to give meds so we have to do Sam's eye drops before we leave and then get back the next day with time enough to do all the eye drops before bed.... But we managed!
When I was younger I wanted to be a photographer and even took some classes but these pictures were taken with just my Iphone. NO editing or filters on the nature pictures. I did lighten our faces in a couple but that's it. I took the most amazing picture.....it was so gorgeous I could have cried. I love the beach anytime any weather but it was on fire after a thunderstorm. Everyone on the beach was looking at the sky- the sunset was gorgeous and the reflection on a bank of clouds to the south of us was just breathtaking!
This.... (don't steal it) Treasure Island Florida You should have seen it in person....It makes me realize how beautiful heaven will be if we can have a sunset like this on earth!
If I ever win the lottery you will find me at the beach!