Breathe, Bible, then Blog

I've started this a few times, and nothing seems to come out right.  The past few days have been hard.  Ellie's disease progression is very obvious and is so hard to watch.  Her walking is very uneasy and she would prefer to hold your hand.  She really doesn't go beyond the couch.  She does go to the table for crafts and food, but we usually have to convince her.  She will gladly pick up the paint brush to paint with Mrs. Kelly, but I usually end up having to feed her because she won't pick up the fork, and frankly its just not a battle I feel is worth is.  She continues to say nothing hurts and never complains about anything.  As Ellie has started to look more and more uncomfortable in her own skin, we have started to give her pain meds, assuming that something is hurting her.  They seem to help her relax a little and be a little more happy.  She takes long naps, which I'm pretty sure she is not actually sleeping the whole time, she just won't get back up on her own.  There are moments in the day where I want nothing more than to make her happy and nothing I do works.  Things she would normally enjoy, aren't any fun to her...those are the most heartbreaking moments for me.  Those times where I cannot see my goofy, happy girl come more often these days and cause a lot of pain in my heart.  Although it does make me appreciate those times where she does shine through, I see a glimpse of my girl and my heart feels healed again.

Lately I find myself having moments where I'm angry, I know anger is a "normal reaction", but it can't stay long...and really what am I angry at?  Angry at people with healthy kids, that's silly.  Angry at doctors, no they do so much to try to help us.  Angry at God...no, He's given me so much and I know has a plan for me, that I cannot be angry at Him. Once I start to think like that, I calm down. 

Today I think I hit my breaking point...or now that I think about it, I'm pretty sure the Lord brought me to this point today because I haven't been turning to him like I should. Ellie had a decent night last night, Noah had a friend over and I think having him over sparked Ellie's interest.  She giggled a little more, talked some and even wanted to go see what the boys were playing in the bedroom.  She actually went with me to go see (but only if we brought her blanket with her).  This morning she ate cheerios happily (that's our new go to), ate some eggs, decorated her gingerbread house and then she was done.  I'm guessing she was tired or the pain meds were wearing off. For me its so hard to see her like this and because she doesn't vocalize how she is feeling, we can only guess.  So those feelings, topped with the emotions of other children loosing the same battle as Ellie, I fell apart.  The grief of loosing a child is attacking me before she's actually gone.  As it becomes more and more obvious that we will not be keeping her, my heart hurts more and more.  I had no where else to turn tonight besides the Lord. I needed to find some peace tonight, it had been missing for a few weeks, most likely because the stubborn lady I am, hasn't had my nose in scripture like it should be.  He really put heaven on my heart and here's what he gave me...

1 Thessalonians 4:13-17

But we do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope. For since we believe that Jesus died and rose again, even so, through Jesus, God will bring with him those who have fallen asleep. For this we declare to you by a word from the Lord, that we who are alive, who are left until the coming of the Lord, will not precede those who have fallen asleep. For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord.

2 Corinthians 4:16-18

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Revelation 21:1-27

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.”

 Matthew 18:10

“Take heed that you do not despise one of these little ones, for I say to you that in heaven their angels always see the face of My Father who is in heaven.”

2 Samuel 12:19-23
David noticed that his attendants were whispering among themselves, and he realized the child was dead. “Is the child dead?” he asked. “Yes,” they replied, “he is dead.” Then David got up from the ground. After he had washed, put on lotions and changed his clothes, he went into the house of the Lord and worshiped. Then he went to his own house, and at his request they served him food, and he ate. His attendants asked him, “Why are you acting this way? While the child was alive, you fasted and wept, but now that the child is dead, you get up and eat!” He answered, “While the child was still alive, I fasted and wept. I thought, ‘Who knows? The Lord may be gracious to me and let the child live.’ But now that he is dead, why should I go on fasting? Can I bring him back again? I will go to him, but he will not return to me.” 

This last one stuck with me the most. I want to be like David, I will not stop praying for that miracle, because I knew He is able.  However when and if He takes her, I will praise Him.  I know I will be sad and I know it will hurt, but knowing she is being well taken care of by someone who loves her more than Mommy and Daddy, eases that pain a tad.  Knowing she is with someone who sent their own son so that we may have eternal life...wow.  I don't always think like that in the heat of the moment, when the pain and tears overwhelm me, but once I slow down, take a breath, read my bible, and write a little blog, I start to see things in a new light. 

We don't know how much longer we have.  Ellie has blown past the doctor's best guess.  She will have her blood work done again next week to see if she can start the next round of chemo.  The chemo she is on is just palliative and will not cure anything, however so far it is helping us gain time with our girl.  And happy nights, like tonight has turned out to be, I am so thankful for that time and thankful to God for once again knowing exactly what I needed tonight to pick up my spirit and help me get my peace back.

I have to share!  We took the kids to visit Santa, my Aunt, who has taken everyone of my kids pictures took these for us, she tried so hard to get Ellie to crack a grin, but the beautifully stubborn girl she is, wouldn't budge.  This was hard for me at first, kids are supposed to love Santa or at least cry...but not my girl.  In fact the next day she told Mrs. Kelly "I didn't smile for Santa,  I went like this (insert pouty face) and it was funny".  I told her she was a turkey, to which she replied "no I'm not, I'm Ellie Marie Blaine, because I'm a princess!"  She couldn't have been more right, that's been my Ellie since the day she was born, stubborn, funny and a princess!

 

We pray you have a wonderful Christmas celebrating the birth of Jesus! 

Prayers, Praise and Pink

~Carly