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!
