My FB status.....
Selah update.....today was a hard day. Her spacicity (the stiffness in her limbs) were awful today. Her right leg at the knee is so tight that it looks like the knee is bending backwards. All I did today was cry. Her left arm is so stiff, it sticks up like she is doing a Nazi style salute. She had NO responses today. They have worked on this is many ways since day one, braces, splints, meds, therapy...nothing is helping her. The meds have been upped today in hopes that it will help her relax some. Her blood pressure has been ok but still not as stable as needed for her to be transferred. We don't know when she will be transferred now but think maybe next week. Who knows....I am very sad and just overwhelmed today.
Some days are just a big kick in the stomach. This was one of those days. I truly hate crying in front of anyone and all I could do today was to cry. I HATE that my daughter is lying in a bed, not able to move her limbs, being fed by a tube, unable to enjoy anything....
To top it off, the other little girl who was going to have the same eye surgery today as Sam has had...couldn't have it once they got in. Her eye was in worst shape than previously thought....so sorry for the family & her. It made me and Jon both cry.
So I have no spiritual words tonight, I'm just a beat down mom who is still trusting the God of the Universe, still looking forward to heaven, because in many ways there is not much to look forward to on this earth. I just want our sweet life back with our five kids running (or in Sarah's case crawling) around getting in to everything, keeping me busy...... I'm tired of the hospital life. I want these past 6 weeks (tomorrow) to be a bad dream that I will wake up from soon. But that life is gone without a miracle and tonight it is hard to believe for one.
Please keep praying that God will touch her. She needs a mighty touch to recover from this.
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
I am so sorry for you and your sadness and exhaustion. The Lord led me to look up Selah's progress tonight and to pray for each of you. I have no answers, but send you love and prayers.
ReplyDeleteJob 6:8-13 (MSG) | In Context | Whole Chapter
Pressed Past the Limits
8-13 “All I want is an answer to one prayer,
a last request to be honored:
Let God step on me—squash me like a bug,
and be done with me for good.
I’d at least have the satisfaction
of not having blasphemed the Holy God,
before being pressed past the limits.
Where’s the strength to keep my hopes up?
What future do I have to keep me going?
Do you think I have nerves of steel?
Do you think I’m made of iron?
Do you think I can pull myself up by my bootstraps?
Why, I don’t even have any boots!
I like this translation. I hope you find comfort in Job's words.
Praying peace and healing,
Marsha
WOW I can relate to THAT tonight!!!!!!!!!!!! thank you!
DeleteHugs again from MI. I also have no words, but want you to know we are praying for you often.
ReplyDeleteKelli
By the way...You probably don't want to hear about this right now, but I thought I should mention in case you were researching therapies for Selah. We do a therapy called ABR that really helps muscle tone problems with kids especially after a brain injury. It is based out of Montreal, but they have a satellite in Florida a couple times a year. Check out www.abrcanada.com if you want to know more. If you are not interested then you can dismiss this comment! Hugs again--
ReplyDeleteKelli
Prayer being said for all of you. As a mom whose child has had open heart surgery even with such Faith in God it is hard to not be able to fix things for our children. This is something I understand fully. Hope and pray things get better for you soon and she can be moved home.
ReplyDeletePrayers being said for all of you.
ReplyDeleteOh my goodness, my heart aches for you. I have been where you are, it was gut wrenching. I'm so so sorry, for you and Selah. Praying for comfort for you tonight as you walk through this valley.
ReplyDeleteWow, I love the passage that Marsha C posted. Amazing! I'll have to read that again a few more times.
ReplyDeleteI'm so sorry for the heartache of today, Yvonne. Wish I could give you a big hug and cry with you (I don't like to cry in front of people, either, but I would cry with you). Praying for you tonight.
--Shawnee
Praying for peace beyond the situation. I know it is hard to see to the eternal perspective when the flesh one is so hard to bear the weight of. Hugs to all of you.
ReplyDeletePraying for peace. I know it is so hard to see the eternal perspective when the one you are living in the flesh is so hard to bear. Hugs to all of you.
ReplyDeleteDear Yvonne,
ReplyDeleteHow strong you are. Strong enough to share your weakness with us all. i wish there were words that i could share that would make it all better for you all. If i knew the words, i would speak them over you. i pray that Jesus will hold you close to His precious heart and comfort you. i pray that He will touch Selah and relax her tight muscles, and keep her blood pressure down. i pray that you will feel His holy peace right now. Know that there are many of us out here in Cyberland that are praying, and sharing your story, so that others will pray too.
In His hands,
Alycia
There will be a day when you will look back and this will be a hard memory, but a memory. When things are so dark, seek that tiny spark of light that you wouldn't see otherwise. God promises it is there. He is holding you in His loving arms, just as He would comfort a child. Let Abba God--Daddy God--comfort you and carry you through this valley.
ReplyDeleteSending love and prayers for you all.
{{{{{Yvonne}}}}} Sending extra love and prayers tonight. Has anyone tried Reiki with Selah? It is energy therapy, and is very calming and relaxing. It might help some of the spasticity and relax the muscles, which in turn may help her high blood pressure. It is considered alternative therapy, and any insurance you may have will probably not cover it. Many hospitals, though, have volunteers who can do Reiki, and if the hospital has a related hospice program, they VERY often have nurses, staff, or volunteers who can do this. It will not cure Selah, but will probably make her feel more comfortable. If you find someone to do it, please ask them to work on you, too.
ReplyDeleteI will pray during any waking hours tonight. Hoping and praying that tomorrow will be a better day for you and all of your family. God bless. ♥♥
Praying for a "better" day today, whatever that might look and feel like for you. Asking God to comfort you even in the midst of all of the sadness and helplessness. So thankful that he is the God of HOPE! ((((BIG HUGS))))
ReplyDeletePraying Yvonne... Praying!
ReplyDeleteIt's Ok to cry! God see our tears too! Keeping you in our prayers. I'm adding a carebridge site for a young man who had a TBI a few years ago. His family is amazing and they have learned so much on how to care for their son. I'm sure you could contact them and get detailed information that might help Selah. I know he's had several things done to help his limbs stay loose. Just thought I would pass it on! Sherry
ReplyDeletehttp://www.caringbridge.org/visit/thomasjosephstanton
Lifting up up to the Throne of God daily and sometimes more.
ReplyDeleteI am late in reading, but prayed last evening for all of you.
Romans 8:28 in my all time favorite verse in scripture. It helps
me through my hard times....God is Faithful!!
Love from NC
You are not alone. I see very few comments posted but you must understnd that there are many of us praying for you and Selah each and every day. I always check on you during my lunch here in Tulsa. It does seem as if this world is troubled on every side. Here is my song of comfort for you today.
ReplyDelete•"Great is Thy faithfulness," O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.•"Great is Thy faithfulness!" "Great is Thy faithfulness!"
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
"Great is Thy faithfulness," Lord, unto me!•Summer and winter, and springtime and harvest,
Sun, moon and stars in their courses above,
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.•Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
Source: http://www.hymnal.net/hymn.php/h/19#ixzz27bEpjuMw
So sorry you're having a tough day today....still praying for a miracle for your little La-La. Praying for the other little girl too and her family.
ReplyDeletePraying.
ReplyDelete