AnnParcon
Disciple of Prayer
Dearest Jesus and Blessed Mother of perpetual help...pls hear mother's cry and plea..pls listen to her heart.
Please HEAL PHOEBE LUCILE FAIR...AMEY'S DAUGHTER
https://www.-banned site-.com/PrayForPhoebe
http://atypicalmiracle.com/
Grief is a strange animal. One moment I’m fine, the next I am blubbering to Benjamin on the way home from the grocery store about Phoebes and life and how it will change. Most days are good; I try to stay in the moment lest I use up these precious hours with pre-mature self pity and sadness. I know it’s God and that yes indeed His grace IS sufficient, because it oft occurs to me that I should be plummeting into the depths of despair right now. There is a super-natural buffer that He is manifesting in my life that keeps me even-keeled and from teetering over the precipice.
I know the precipice is there, but I’m not going there today. Not while she’s still here.
There is plenty of time for that later.
Today was rocky. We took her to the zoo. She loves animals usually, and getting out and about, but it feels like the time for these types of outings might be past us now. She is easily upset, emotional, and sensitive to light and noise and activity. She stopped for the birds and we enjoyed some giggles in the bird habitat where they flew all around us. Patrons can buy bird-seed on a stick and the birds will allow you to hold them. She laughed and squealed and ducked when birds flew close by.
I will see this moment in my mind’s eye on some distant day when I take the boys back to the zoo and step inside that bird habitat again.
Thoughts like that punch me in the gut every now and then. The going on without her, and yet seeing her everywhere I go. Stopping at a gas station on a family road trip…Nathan takes the boys to the bathroom, me and Phoebes go together..now I will go alone. The only girl.
This is where my thoughts take me, so I try my best to stay in today, in this moment. For each day has enough trouble of it’s own. And there’s eternity to spend with her and I hang my hat on that.
We left the zoo early, she was shaking due to low sodium and she was wanting me to hurry past all the animals in her desperate quest for relief from the pain. Her noggin is bothering her as the pressure grows. She doesn’t like to lie down and has a difficult time getting comfortable when she does. We have given more pain meds today than we have before and she seems to respond well to that so far.
Next week we will start palliative radiation to hopefully slow down the tumor growing in her brain. This is not a curative treatment, nor can it be for Phoebe. This treatment is to make her as comfortable as she possibly can be. Ten days of short radiation sessions have the potential to reduce her pain and pressure in her head, shrink the tumor a bit and/or slow down it’s growth and give us more time. I say potential, because not all of those things are certain to happen, but it is definitely worth the try. She should have minimal side-effects from the radiation, maybe sleepiness, but it should be fairly uneventful.
This will not damage her cognitive skills..it would over years, but not in this instance. So, we will be travelling to and from Dallas and/or staying in Dallas for some time during the next two weeks.
Deacon started play therapy/counseling on Monday and really enjoyed his counselor. The big boys will receive counseling too at some point, but Deacon is really struggling and doesn’t know how to express it, so we wanted him to go right away. Please pray for his grieving little heart. He pushes her away and feels guilty about it, it’s just so much for a five year old to deal with.
Nathan and I could use prayer too of course, for peace, for wisdom in how to talk with the boys, for good communication, and to be on the same page in regards to Phoebe’s care. It’s all very messy at times, and I literally forget why I walked into a room, or what I am doing, or what I am saying several times a day. I have read this is typical, but it is frustrating not being able to focus on anything.
Thank you again, to all of you, who mow our yard, bring us meals, send Phoebe cards and messages of love, help out with the boys, and write encouraging notes to us. All of this is so appreciated, please know how surrounded we feel, and supported.
Please HEAL PHOEBE LUCILE FAIR...AMEY'S DAUGHTER
https://www.-banned site-.com/PrayForPhoebe
http://atypicalmiracle.com/
Grief is a strange animal. One moment I’m fine, the next I am blubbering to Benjamin on the way home from the grocery store about Phoebes and life and how it will change. Most days are good; I try to stay in the moment lest I use up these precious hours with pre-mature self pity and sadness. I know it’s God and that yes indeed His grace IS sufficient, because it oft occurs to me that I should be plummeting into the depths of despair right now. There is a super-natural buffer that He is manifesting in my life that keeps me even-keeled and from teetering over the precipice.
I know the precipice is there, but I’m not going there today. Not while she’s still here.
There is plenty of time for that later.
Today was rocky. We took her to the zoo. She loves animals usually, and getting out and about, but it feels like the time for these types of outings might be past us now. She is easily upset, emotional, and sensitive to light and noise and activity. She stopped for the birds and we enjoyed some giggles in the bird habitat where they flew all around us. Patrons can buy bird-seed on a stick and the birds will allow you to hold them. She laughed and squealed and ducked when birds flew close by.
I will see this moment in my mind’s eye on some distant day when I take the boys back to the zoo and step inside that bird habitat again.
Thoughts like that punch me in the gut every now and then. The going on without her, and yet seeing her everywhere I go. Stopping at a gas station on a family road trip…Nathan takes the boys to the bathroom, me and Phoebes go together..now I will go alone. The only girl.
This is where my thoughts take me, so I try my best to stay in today, in this moment. For each day has enough trouble of it’s own. And there’s eternity to spend with her and I hang my hat on that.
We left the zoo early, she was shaking due to low sodium and she was wanting me to hurry past all the animals in her desperate quest for relief from the pain. Her noggin is bothering her as the pressure grows. She doesn’t like to lie down and has a difficult time getting comfortable when she does. We have given more pain meds today than we have before and she seems to respond well to that so far.
Next week we will start palliative radiation to hopefully slow down the tumor growing in her brain. This is not a curative treatment, nor can it be for Phoebe. This treatment is to make her as comfortable as she possibly can be. Ten days of short radiation sessions have the potential to reduce her pain and pressure in her head, shrink the tumor a bit and/or slow down it’s growth and give us more time. I say potential, because not all of those things are certain to happen, but it is definitely worth the try. She should have minimal side-effects from the radiation, maybe sleepiness, but it should be fairly uneventful.
This will not damage her cognitive skills..it would over years, but not in this instance. So, we will be travelling to and from Dallas and/or staying in Dallas for some time during the next two weeks.
Deacon started play therapy/counseling on Monday and really enjoyed his counselor. The big boys will receive counseling too at some point, but Deacon is really struggling and doesn’t know how to express it, so we wanted him to go right away. Please pray for his grieving little heart. He pushes her away and feels guilty about it, it’s just so much for a five year old to deal with.
Nathan and I could use prayer too of course, for peace, for wisdom in how to talk with the boys, for good communication, and to be on the same page in regards to Phoebe’s care. It’s all very messy at times, and I literally forget why I walked into a room, or what I am doing, or what I am saying several times a day. I have read this is typical, but it is frustrating not being able to focus on anything.
Thank you again, to all of you, who mow our yard, bring us meals, send Phoebe cards and messages of love, help out with the boys, and write encouraging notes to us. All of this is so appreciated, please know how surrounded we feel, and supported.
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