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.What to do?
Tomorrow is church. I really want to go but there are two very good reasons not to. First the doctor said he regards Alivia as immune suppressed and so we should be extra careful of germs. At church everyone wants to shake hands or touch Livi's hand or give a hug. Its just a natural response but in this case it is so hard because we have to say please dont' or we can't. If someone shakes my hand and then I touch Livi I could get her sick.
So that is reason number one not to go the second reason is the rash. It doesn't look pretty (to say the least). We went to a store and to market today and we got a lot of stares. At one point I almost started to cry. It is so hard. (Bri I am so proud of you for leaving the house...people can be so unkind!) I want to shout what is your problem? She can't help it. What can we do stay home all the time? Its so human to just stare when someone doesn't look like us but now I'm on the other end and I realize how hard it must be to look out from a face that doesn't look "normal". It was almost easy to forget how sick or how serious this all was until the outward signs started. Now every time I change her diaper and see her little body covered in the red spots (which turn browninsh-purple the second day) I want to break down.
On a different note...I want to let everyone know we are talking about a second opinion with our doctor. So no more questions about it for now.Our doctor is sending out her bloodwork to many specialist (including the Mayo clinic) and consulting with many specialist (at Hopkins and Children's of Pittsburgh to name a few). We are doing the best we can. We just need to get through this next week and a half of testing and then we will make a decision. If we do get a second opinion it will probably be in Pittsburgh. For now we feel extremely confident with where we are and that is where God has us for now. I promise if we get the slightest feeling that we aren't getting the very best for our Alivia we will fly to the moon if we have to.
Thanks for today....
Cards from Jim and Heather Rice, Grace and Samual Spinetti (and their mom and dad), and the book "there's a monster at the end of this book" (I love that book!!!) and a Grover doll from my cousin Sarah. Thanks so much everyone
posted by Alivia's Momma @ 3:44 PM
16 Comments:
I did cry when I saw my "girlie-whirlie" all covered in spots! In fact this has been a general crying day... My Walmart trip just didn't do it for me today. In fact, when I saw Betsy Mitsko and her friend Linda, I left them in tears..."must be hay fever season"...Betsy, it was so good to see you! I think I will go dig up some plants and move them around....yeah, that's the ticket. As good as it is to be "home", my heart is in Lancaster. Gigi
My prayer is that God will meet your need for deep fellowship...may the Lord nourish you richly day by day. I'm trusting God for you when he says his compassions are new every moring: great is his faithfulness. Lam.3:22,23
James, Emily, and Alivia-
We think of you and pray for you daily. May He guard your hearts and minds with His peace and uphold precious Livi with His strong right arm. It is amazing to see all of the people carrying this burden with you.
Love-Pete, Grace, and the girls
James, Emily, and Alivia-
We think of you and pray for you daily. May He guard your hearts and minds with His peace and uphold precious Livi with His strong right arm. It is amazing to see all of the people carrying this burden with you.
Love-Pete, Grace, and the girls
Emily and james,
sine i am only 13 i don't really know what to sya except keep praying! i am praying daily for you guys. i can't imagine how hard it is for you. remember God is there for you when you need him. we are praying consstantly for that miracle for livi, just like i have been saying the past couple comment. remember that everything that happens to your little baby, God has a plan for. I will keep praying for you and i hope that rash will just GET OUT OF Here!
Love,
moriah freeman
WE are praying! praying! praying! constantly for your family and for your baby girl Livi who means the world to you. Remember God is there when you need him, all you need to do is call on him and he will answer.
Love,
the Freeman family
Emily, I just want to send you a big (electronic germ-free) HUG! I continue to pray for you and all of your family. Please be as good to yourselves as you can be during this very trying time. I hold you in my heart, and I believe that God holds you in His arms. God bless you.
Cathy S.
dear emily,
i have continue to visit and read each of your entries to keep updated with your daily prayer requests - thank for sharing your heart and life with us.
praying for you and james today.
hugs to bb alivia your precious baby girlie.
love you - mrs. c
Em,
I don't know if you'll check the blog before church. If you don't, I trust God's Spirit to "teach and instruct you in the way you should go."
RE: whether to take Alivia to church, I was praying for you this morning and thinking about it. When I've faced those kinds of decisions, I have learned to pray (which I know you are doing), ask my husband, and if he feels strongly a certain way, trust him and go with his decision). If he doesn't feel strongly a certain way, I "go with my gut". I believe the Holy Spirit gives us that gut feeling about what is right if we're walking in the Spirit. Once you've made a decision, walk it out in faith and confidence, not wavering (like it says in James 1 about the double minded man).
Whatever decision you make will come with its own set of potential consequences. WHatever you decide, have your heart postured to respond gratefully to those consequences, trusting that God is leading you and directing your steps. Don't look back w/ regret.
Is that helpful? I do hope so. I don't claim to have an edge of this stuff, but I felt God gave that to me this morning to share with you.
And, as far as being out in public, it's not so fun, is it? Hopefully, Livi will get over this little rash quickly and you won't have to worry about the stares anymore. But, if not..give me a call and we can talk anytime about it. I have a bag full of stories that as I share in retrospect can make us both laugh. :)
Wow Emily! What an amazing Mom you are! I hve spent the past few weeks reading your daily blog, it tugs at my heartstrings. I remember all the fears and apprehension a new mom has and how there are just some days that you just feel so helpless and out of control.... when someting just isn't right with your child and you can not put a finger on what do do to make it all get better. And then sometimes you wish you could trade places when your little one has to suffer in any way.
I took the liberty of going back to your entries before this roller coaster ride began and I saw entries in January about how you felt when Livi was sick and crying as she was getting new teeth. (Teething....Gee, does that bring back memories.) You also shared how difficult it was for you, but that you kept reminding yourself that after the event was over, Livi wouldn't remember it at all. That is so true!
You have come a long way since that time....In fact today it is exactly 1 month since this event began. This must have been the longest month of your life! I can only imagine what you have been going through emotionally as you once again feel scared and so unsure what to do to make this all go away. But I see a woman who has grown so much over the past few months and one who has held on tightly to family, friends and most importantly God to get you through these tough times. You are so remarkable....feeling the heartache and sharing it with the world, yet also sharing how you see God's hand working in all things. Your faith is strong and it is such a wonderful testimony to others!
Over the course of time, so many people have offered prayers and scriptures to get you through this ordeal. I prayed, "Lord, what can I say that has not already been said? What scripture should I share that hasn't already been sent?" I picked up my book, "The Power of a Praying Parent" by Stormie Omartian. Chapter Two is entitled 'Releasing My Child into God's Hands'. In this chapter, Stormie shared about the times she stuggled with feelings of helplessness throughout the life of her children (in particular..her firstborn son). Though she prayed for him daily and listed her every concern for her son to God, she never felt real peace until she cried out to God and realized that she needed to totally release her son into God's hands. She was reminded that her son was a gift to her and her husband and that God actually loved him more than they ever could! She remembered the scripture "cast all your care upon HIM" 1 Peter 5:7. Daily she released her son to God. Over time she was felt a freedom from fear. She also began to feel a sense of peace that only God can give. Stormie began to practice that with each of her children and continues to this day as she watches them go through struggles and growing times that she can't control. She said that if she was not positive that God was in control, then she was ruled by fear. So now, she releases them to God to do his mighty work and expects that no matter what the circumstance, God will only do the very best for them in their lives.
Dear God, I pray that you will continue to reveal yourself in this situation and that Emily and James will grow stronger in their faith journey as they see you at work in their lives. I pray also that they can totally release Livi into your hands and that they will feel your comfort and peace as they wait for answers to test results and for whatever lies ahead for Livi. I pray for restful sleep and for daily refreshment as they wake up to each new day. I pray for your powerful healing touch to be upon Livi so that she can live as a happy healthy child and be a witness of your goodness and mercy. In Jesus Name. Amen.
God Bless You and Your family
Mrs. Curry
Emily,
I don't know you at all, but I wanted to encourage you with an example from our church. We have a 8 month old who has been in and out of the hospital with a heart condition. He had open heart surgery at 5 days old and has had other procedures done thus making him prone to picking up anything and everything. Any little cold would be bad for him. In the nicest of ways, our church was basically told not to touch him. Could your pastors say something gently from the pulpit: "Alivia is here today - We know that everyone wants to see her and her family. However, please refrain from touching her or shaking hands with James and Emily. We want to keep all three of them healthy." Everyone will want to see you and Alivia so I'd arrive late and leave early so you won't have to deal with as many people.
You can see more about the little boy at www.sagraves.blogspot.com.
Suzanne ~ Cornerstone Church of Knoxville,TN
Hey Emily, James, and Alivia,
Just wanted to let you all know that we are continuing to check in to see how you all are doing and praying for you.
Love,
Meghan Mellinger (for Jared too)
well, i saw you guys this morning, so, obviously decision made!! it brought a smile to my face! it was a crazy morning, so i was pretty much glued to my post at projection - but that didn't keep me from raising up praise to our Father for allowing you guys to worship with us. i hope you were able to experience God's presence this morning and allow the Holy Spirit to fill your minds with peace and comfort. thanks for the continued updates!! give livi a hug from me!
lisa evans
Oh I am so blessed by all your comments, and can't help but think God must be too. We also went to church this morning...SO good to see all the dear faces...and the story line came back to me of the poor Christian widow who was given a slice of bread (Boy, am I murdering what is surely a good story!!!!) and she thought ... "all this and Jesus, too". That is how I WANT to feel in my heart about God, the fellowship of the saints, which truly was a waterfall this AM, and for JESUS to be my all in all. I know he can do that for me, and heal Livi too! I can truly say, it was a good day. Livi's last pic was precious, thanks Emily. I love you, James, Livi...and thank all of you who are praying. I am humbled and know it is God's good for us now. (Ok, once again too long, so give me a berit madge! Why say something in 25 words when you can take 100!) Gigi
James and Emily,
I was so happy to see you guys this morning! I hope it was encouraging for you to be with your church family and not too stressful. Sorry for touching Livi's hair, I felt so bad. I didn't do a good job keeping up with reading the blog this week, and I had not read the latest post.
I was catching myself up tonight and sensed that you seemed more weary than before. I am praying that the Holy Spirit would give you strength that could not be your own. May you know His peace that passes understanding. I sense God put Isaiah 40:27-31 on my heart for you. Continue to trust God. Your faith brings me encouragement, and Glory to our Father!!
Although I have not been good about letting you know, please know now that you are continually on my heart. Many times I feel your burden so heavy that I just cry for you all.
Sending my love with HUGS,
April Stoltzfus (for Jeremy, Lane, and Ava, too)
I can only say the "nearness of God is my good"! How I have found that to be the real truth for me. Once again, I must set my face to see HIS. Gosh, I miss Livi! Only a week to go till I hug her and her family again. A funny story: A woman came into my office today to tell me that she needed a hearing aid, her ENT told her that. Helen, I said, I am not surprised. She then looked at me blankly and said, what? Oh well, as my family often says, you had to be there! G.
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