I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day +9
What to say about today. Rachel came to visit which was by far my best moment of the day. We talked about her coming and she e-mailed to say she was but I didn't check my e-mail and just forgot so when I saw her at the door I just started to cry. Thanks friend for coming it ment so much. I love you.
Otherwise the day was pretty rough. Alivia is starting to experience more pain and so more morphine so more hyperactivity. Also her blood pressure went really high today. It was pretty ense here for a while. It just kept getting higher and higher. 3 doses of lasics and 2 blood pressure meds later it is finally a little lower. Part of the elevation is due to pain but the main part is due to the meds that she is on. All transplant patients end up on blood pressure meds at some point or another but its hard to watch her like that. Her checks get abnormally flushed, lethargicish (hard to explain) and cranky. Right now I am still awake because I am waiting for the 2 am blood pressure and the 1:40 Morphine dose. Alivia fell asleep around 11:30 but has been waking up screaming every half hour or so. I will sleep after the pressure is taken and the next dose is given. Hopefully that will make it possible for her to sleep peacefully for a bit.
Picture of Livi with Rachel and Livi lounging.
I'm tired. I want to go home. I want a real shower that hasn't been used by a stranger who doesn't have the courtesy to clean up after themselves. I want to go bare foot and not be scared of the cooties. I want to cook for myself and my family. I want to have to vacuum. I want to check my answering machine. I awnt to have Alivia unattached to tubes for more than just 30 mins a day. I want to go to the grocery store. I want to stand in my closet and figure out what to wear. I want to sleep in a room that no one is going to walk in and out of throught the night. I want to be able to change the channel on the TV by pressing in the numbers of the channel I want (the remotes here only go up. so if you miss the channel you want you have to go the whole way around again). I want to take Alivia outside of this box of a room and play and run and be normal. I want my baby to be healthy. I dont' want to discuss if she needs another blood transfusion or which anti-fungal medicine to put her on or how much morphine she needs to be comfortable. I want to feed her and not have her live on IV nutrition. She hasn't taken a single bite of food in 2 whole weeks. I want her bottom to be better and not to bleed every time I change her. I want to put an outfit on her that matches and does't have to be changed because she throws up or her diaper leaks. I want to bake and cake and sing "happy birthday" and let her get icing from head to toe. I want her hair back. I want this all to be over. I want a lot but these are all things most people take for granted each and everyday. It's been a long day. Sorry for the rant.
posted by Alivia's Momma @ 1:29 AM
49 Comments:
Dear Emily, I was sitting here, crying for you and for Alivia, wanting all those things you listed for you too, wondering what on earth I could write. You know, I don't know you, and I care so much about Alivia and you. The Lord Knows you. He knows Alivia. I can't begin to imagine how much He cares about and for her. Thank you for sharing ... it really does help us bloggers to pray. With much love, Janet
Rant away Emily. I can think of noone more deserving. I will continue to pray above all for her complete healing so that you never face this battle again. You are such a good mommy. Hope you are all sleeping well.
Emily,
I too am so sorry you all are going through this it is heart wrenching. I am daily praying for each of you.
Carol M.
REading with tears. Praying and praying. See you Wed.
Love, Les
REading with tears. Praying and praying. See you Wed.
Love, Les
emily-
my heart is for you and for all your desires for alivia and for this whole process. i am praying that all these desires of your heart that the Lord will forfill them. praying for your day. love you-jamie
You continue to be in my constant thought and prayers...praying with faith that God will do BIG things for your little girl!
Dear Emily, Your strength continues to amaze me. God must beam when he looks down on you as you continue to praise him in this storm! You are human, you are hurting like none of us can imagine. Just remember how much you love Alivia, and know that our Lord loves you both in the same way and much much more. He will never leave you or forsake you, even though there are times like this when you feel like he has! Keep your faith up!
You truely inspire me daily.You make me want a closer walk with my Jesus. Praying for all your requests. Mostly thanking him for healing Alivia! I know this is in his plan! In him, Mindi
Oh Emily...I don't know you, but really wish I could give you a hug. Everything that I come up with to write sounds so dumb. We all do take those things for granted and I wish more than anything I could give them all back to you and Livi.
Also, I am A+ and would LOVE to come donate blood for Livi. I will ask Mike Gerhard to get in touch with James to find out what I have to do to donate specifically for her. It would make me SO happy to be able to do that.
You all remain in my prayers every day!!!!
{{{HUGS}}} Vicki Moore
We hear you, Mommy. The troops are still rallied in prayer and anxious to do more.
I often think about how glorious it will be to see James, Emily and Alivia stroll through the doors at church. We should pray for protection on THAT day, because y'all will be mobbed! We are still in faith that that day is coming.
"I love you, O Lord, my strength.
The Lord is my rock and my fortress and my deliverer,
my God, my rock, in whom I take refuge,
my shield, and the horn of my salvation, my stronghold.
I call upon the Lord, who is worthy to be praised,
and I am saved from my enemies...
In my distress I called upon the Lord;
to my God I cried for help.
From his temple he heard my voice,
and my cry to him reached his ears."
Psalm 18:1-3,6
Emily, you are constantly in our thoughts and prayers, reading your blog with tears. I'm so sorry you are going thru this but know there are a lot of people praying for you. You did mention you are looking for blood donors do you have the form to fill out? you can email if you want becky@millerbros.com thanks
Lots of Love,
Becky Hoover
O Emily, my heart aches for you. I am sure it would be hard to go through all that. Just trust the Lord, I mean he is in control of this whole situation. I will pray that you will be able to go home soon, and be able to take a shower in your bare feet, and just play with your little girl without her having tubes in. I will pray that this will all be over very soon. Keep trusting God Emily and James.
Love ya all,
Moriah
I'm so sad about all this for you and james and your whole family. it breaks my heart, and the only thing that is any comfort is knowing that it breaks God's heart too. there is something nice about knowing that - i dont know why.
i am praying and thinking about you all day.
love, rebekah
Emily,
I am so sorry for all you are going through.
Fervently praying for Alivia's complete healing!
Blessings,
Maryann Plesnicher
Emily,
You go girl. Rant away. Gotta get things off your chest. We are all listening and behind you. I wish I could take some of the burden from you. You, Livi and James are loved. Keep making the best of it. The finish line is right down the road. Your endurance has been proven.
Love, Lisa
You are so strong. I read your blog everyday and the fact it has been this long and you are just ranting is amazing. You are amazing and I cant wait for you to look back on this and its a distant memory. Much love! Heidi
Hey Emily,
Reading your entry was very difficult. Recently I have been reminded how the normal gets miss prioritized. I understand your desires for the way it was before. Know that you are in my thoughts and others are feeling your pain too. Embrace the moment, hold tight to the baton, and keep your eyes on the end. You are running a good race. God is giving you the grace and strength to persevere to the end.
Emily, I hope you find this as a comfort. God is sovereign over all things. He doesn't give us more than we can handle without giving us the extra measure of grace to walk through it. I can't say that I completely understand this, but I know it is truth. Emily, I see his grace sustaining you. He understands your moments of ranting.
May Livi and you experience a sweet day and a peaceful night of sleep. I will be praying for you today.
Father, I pray that you will meet Emily in a fresh way today. I pray that her day would be seasoned with your kindness and mercies that are knew each day. Lord, we know that rest is a gift from you, and I pray that you would bless Emily, Livi, James and the rest of the family with a sweet night of rest. Strengthen each one of them in body, mind, and spirit.
I also pray for Livi. Lord you know the difficulties she is enduring. Please heal her body. We know that there is nothing too difficult for you God. We know that you can supernaturally touch her body and bring healing to the areas that are being aflicked by the side effects of chemo. Strengthen her today.
Amen.
Be blessed and encouraged today.
lb
You are right, we take so many things for granted. From the small things (grocery shopping) to the big things (healthy kids), reading your heart on this entry helps put things in perspective. I wish there was more we could do for you right now, Emily. We would...in a heartbeat! It's not that prayer isn't the GREATEST thing we can do--it is! But sometimes there are practical life-things that we wish we could give you too! Just know we love you.
Garners
Eyes fill with tears but heart is filled with hope and love. praying that it will not be long until you are doing all the things you desire with Livi by your side full of good health and joy of living the ordinary life . Marmie
You deserve many things-a healthy baby, sleep, etc. So if ranting is what you want right now...you definitely deserve to do so! I hope today is a better day for all of you! We'll be praying!
Natalie Murdick
This is a quick happy b-day to the coolest kid around. Happy Birthday Alivia.
Love,
Uncle A-ron
WE SEND WARM HUGS TO ALL-- MAY YOU FIND THE WARMTH OF JESUS
Rant away, Emily!
It's OK to rant...to us who will pray for you and to our God who will comfort you. Pour out your heart to Him. We do as we pray for Livi and for Him to be sovereign over this whole situation, even though we don't understand the "why's" and to heal Livi completely.
You are fighting the good fight.
Still praying!
Mary Ann K.
I really don't have any words that could possibly make you feel better and I can't grant you all you wish, but I am praying and I am trusting God to give you the desires of your heart, to provide sustaining grace to persevere each moment today and tomorrow and the next day.
John Piper says it much better than I ever could. It is my prayer for you today that you would know God's sustaining grace in an experiential way:
"Sustaining Grace:
Not grace to bar what is not bliss
Nor banish all sorrow, but this:
Grace that orders all our pain
Then in the dark is there to sustain."
I love you so much, dear friend.
After you go through something like this, I guess you never, ever take any normal thing for granted again. We can all learn from you to be thankful when life is even close to normal. Jer 29:11 11 "For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope."
That last anonymous was me: Aunt Cheryl
David did it in Psalms, Job certainly did. Jeremiah did in Lamentations. I wrote my own chapter of Lamentations when my baby was sick (years ago) Still hasn't been cannonized but I know that God honors it. Probably has it safely tucked between all the other important books on his library shelf! I know, because He heard me, He answered me, He cared and He cares.
Love you guys so much,
Aunt Marcy
Livi is tooo precious -- I have you in my thoughts and prayers are being said -----ALWAYS
Our thoughts and prayers are with you. We are praying for healing for your precious little Livi.
God Bless~
The Drago's
honestly emily...i really admire you! You may not feel like it at times but God is really giving you strength. Thanks for sharing your thoughts...they definitely brought a tear to my eye and a better picture of what you are going through. Sometimes i really wish i could do something to save you three. then i just pray harder. Don't give up though...you will be blessed through this and i know you are such a huge example to Livi when you stick by her and love her through all of this. There are many rewards waiting for you!
When I used to get frustrated I used to tell my mom and dad that I needed a "big screem"! They would actually let me do it too...the neighbors only asked about it once! I ususally did feel much better afterward. I wish I could scream aloud for you right now...No scream would be loud enough to relieve anything that you, James and especially Livi are going through. As momofcolin_chloe said - there is no one more deserving of rants...don't apologize! Despite my inability to provide words that help I do pray and pray and pray for all of you ...more than you know!
Love, Jessica
oh emily, you are going through something so very difficult right now. you really are. i am praying for you all today. know that many others are praying and loving you too. xoxo
Oh Dear Ones,
I am crying and praying for you this morning!
Rochelle C.
Oh, Emily. None of your faithful readers can begin to imagine what it is like to be in your shoes. My heart aches for you. You are in my prayers.
Kristen E.
As I sit at my cubicle @ work w/tears in my eyes, I'm praying that God would give you His strength. He promises to give rest to all those who are heavy laden and burdened - I think it's safe to say that this describes you Emily. I am so sorry that you are going through so much. I'm praying for all of yinz
Love you,
Maureen
I like the rant away comment. Let it rip.
AGAIN - Your strength and faith are so encouraging. Rest in his arms. We are all out here, praying, praying, praying
Diana B.
You go girl!!! Rant and rave all you want, you deserve it. Just wish all the best for your and you sweetie!
I will check out how to donate blood with Mike or on your blog. My husband and I will help if possible.
Praying and thinking of you all the time, and will continue to do so.
Hugs and Kisses,
Chris Troutman
You go girl!!! Rant and rave all you want, you deserve it. Just wish all the best for your and you sweetie!
I will check out how to donate blood with Mike or on your blog. My husband and I will help if possible.
Praying and thinking of you all the time, and will continue to do so.
Hugs and Kisses,
Chris Troutman
Hi, Emily -
I think it must feel like you are in prison, or maybe just an endless nightmare that gets a little less bad from time to time but that you can't find a way to wake up from. You try so hard and so consistently to put a positive spin on everything, but right now there is just not much that feels positive to spin. I'm so glad your friend Rachel was able to come and be with you at such a trying time. You know that the prayers of so many are with you. I pray especially that today was better. But rant if you need to - we are out here listening and caring, and I know God is listening and caring for you too. Praying for you to feel God's comfort. When the day comes that you have those amazing everyday blessings that you miss (and some that you never imagined you could miss - vacuuming??), what a joy that will be! We hear you and stand beside you in our hearts.
Cathy S.
I hope you can understand how you are a true inspiration to me, as a wife, a mother, and as a woman of God. I can not imagine how you must feel, what you are going through...and as a mother of 3 I find it impossible to understand how you are managing, seeing your child going through all that you are. But look at you...another day has passed and when you haven't felt like you can go on, you have...and by God's grace you will keep seeing each day as it comes. I know it must seem near impossible at times not to worry about tomorrow...but when you live in today, not focusing on tomorrow, you are truly living how God has called us to live...what an amazing and brave person you are to me. Please know that even though I do not know you, your husband, and your beautiful little girl, I feel honored to be able to pray for all of you...you are amazing people! And please know that there isn't an hour that you all are not on my mind...May God truly bless you and your family, more than you could ever imagine!
I wish I knew you. I wish I lived close by. I wish there were something I could do. Please know that I am praying - and that's probably the best thing any of us can do. I pray that you are all having a better day today. God bless,
Dear Emily, James, and Alivia,
The Lord has you in His hands. He loves you more than anyone can imagine. He wants the best for you, and nothing is too hard for our God. Lean fully on Him, for He will never desert you. I am praying for you all, for healing, for strentgh, for continuing faith.
Love, Jean
I was listening to a really good message the other day by Dave Harvey; he was speaking about suffering and trials. He said, “One of the best ways to measure faith is to see how we respond in trial. God allows our faith to be tested that our faith might reveal the degree of our maturity, but than also for some people the degree of whether they know God or not.” I know this is not the away anyone would choose for you all to be tested or have your faith strengthened, but for some reason God did, and maybe you wont ever understand why until you are in heaven. Dave Harvey also said, “Authentic faith cannot be built in peace”. God must be preparing you for a future work, even though it is SO hard to see. So we will all keep earnestly praying for you all, and we can see your authentic faith being build like a new skyscraper that gets bigger and bigger everyday, but does not end.
Much Love, Erin
Emily, Lay it all out there & rant away. It's refreshing to hear your honest requests before God. Thanks for reminding me to appreciate the normal chaos of life. I pray for healing for Alivia each & every day, even though I don't get to comment on here as much as I check it.
Praying & crying, beth
You wouldn't be normal if you couldn't rant. I'm praying every time I think of it.
Emily, I just wanted to tell you that I am praying for you and Alivia and everyone all the time. I am praying that the joy of the Lord would be your strength!
-Jenn W.
Emily,
Praying, praying, praying... that this will all soon be behind you, that your beautiful baby will be healed, and that you can once again enjoy life as you once knew it. There isn't a moment that goes by in my day when I am not thinking about you and Alivia- I carry you in my heart at all times. You'll never know just how much of an effect you and your little one have had on my life and so many others- you are one amazing mommy/woman/wife! I completely understand all of your wants and was thinking and praying about those very same things for you over the weekend, even before you posted- I'm a few prayers ahead of you! I'll continue to pray for better days (and nights) for you and sweet little Livi.
With love,
Julie D.
"As for you, O Lord, you will not restrain
your mercy from me;
your steadfast love and your faithfulness will
ever preserve me!"
Psalm 40:11
praying. love you
beth
Oh Emily,
How amazing you are. I wished that I could take away some of your pain. I can't imagine what you are feeling. You deserve to get it all off your chest. I pray that you will have your wishes for Livi. You are such a great mother. So selfless - you are in my constant thoughts. Betsie
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