We finally have a date for Hope's next varices surgery. She will be going in on January 22nd. That gives us a couple of weeks to pray for this procedure, I cannot handle losing ground with Hope. She continues to poorly tolerate her feeds and is not getting any better. Going back to the OR makes me think about weaning her off oxygen again from the intubation and stopping her feeds all over again. I can't imagine us getting out of the hospital anytime soon.
Today has been rough. I'm getting tired and the endless hospital stay is starting to wear on me. I feel terrible that I look forward to leaving the hospital when I'm here. At the same time I'm always anxious to get back in the mornings. I love Hope like crazy. I have to remind myself that mothers of healthy children do not sit in one room with their child all day long. They walk away to shower, go to the kitchen or change the laundry. In the hospital, you don't have those options. As each month goes by, my sanity slips further away and I have days like today. I long for a vacation from my life and yet could not bear to leave my girls behind.
I have started working hard to stop sleeping at the hospital. Hope doesn't know if I'm there or not when she's sleeping. It helps to leave but is a part time job to organize it all too. We also work hard to have dinner together as a family. It has taken an army of volunteers but most nights this happens. Maybe God is calling me to start a charity when this is all over. Finding other people who have experienced endless hospital stays that will volunteer their time to take over for parents that are in hospital with their children.
I truly hope this weakness and overwhelming emotion is hormonal or temporary. I cannot continue coming to the hospital and sitting next to Hope each day. Watching her retch and desperately try to throw up while her face is blue is too much. Seeing the lab roll up to the door and knowing that Hope will scream until they get their blood and leave her another bruise is so hard. Leaving a piece of my heart each time I walk out of the hospital room is beyond painful. I want to pick her up and take her with me. We all long to be with those we love and I have to take my family in pieces each day.
I am in need of prayer. I want the Lord to renew my strength. I desire to not allow comments from others or lies from Satan to make me feel guilty anytime I leave the hospital. I want to bring Hope home and to see some light at the end of the tunnel. Tomorrow is a new day, I pray I wake up with renewed strength.
Amy I'm one of the many people that have never met you or your family but have been praying for you. I travel all over the world for my job, but no matter where I am I daily read your blog and take time to pray for Hope and the rest of you. I have just taken time to pray specifically for you. When we are weak He is strong. That's not just a cliche it's a biblical promise. He will give you strength. Hold on tight Amy - we are surrounding you in prayer and He will be faithful.
ReplyDeleteAngelina
I am praying for you Amy!
ReplyDeleteOh Amy, we don't know each other but my heart breaks for you tonight. You are an inspiration, I have no idea how you do what you do and it is my prayer that you feel nothing but peace about the choices you have to make about where you spend your time. I can't imagine not having all of my children under one roof and the pain of dividing my time between them. May you know that what others think is inconsequential, that the God who has big plans for both Sadie and Hope has chosen these beautiful blessings for you and Sean because He knows that you have the heart and wisdom to parent them His way. You are incredible and both of your girls are blessed to have you as their mom. Be sure to take care of yourself and we'll keep praying.
ReplyDeleteDon't let anyone make you feel any guilt for your choices to get away from the hospital sometimes. You're doing just fine. Those dinners with the other people in your family, rare evenings out, nights sleeping in your own bed and mornings waking up to a somewhat normal routine in your own home are all really healthy things to do for both your own strength and sanity an so you can be the best mom and wife you can be in a long and difficult journey for your family. You're doing good. <3
ReplyDeleteI will pray for you Amy. May the Lord continue to give you what you need for each day. Continue to take care of yourself so that you can take care of your family.
ReplyDeleteOh Mama. <> Sending up a prayer right now. This is not an easy place to be at all. it is weary-full and exhausting. However, you are not alone. An army of prayer warriors is praying over your family and presenting you to the foot of Christ. <3
ReplyDeleteI am praying for you, Hope and your whole family. I am praying that God will give you strength and endurance and take you in His loving arms and hold you and comfort you. Thank you for your updates. It is a privilege to pray for you.
ReplyDeletePraying for you Amy! You have been through way to much. I pray that God will allow you to REST and get away without feeling guilty! I know it seems to be unthinkable, yet...maybe you need it!
ReplyDeletePraying that God will give you wisdom to know what to do.
If you don't take care of you, then your family won't have you....please take care of yourself!
I found out today that a friend of ours had a little baby boy born yesterday with HLHS....I am not sure how much they know about it, but apparently their little boy had an episode last night, and they think he may have brain damage. Please pray for them as his name is Beckett, and he is their first born.
I think they had no idea he was so sick.......there are several praying for them as well....and I think of the long road ahead of them. He is precious to the Lord, and his Mommy and Daddy are very emotional right now!
I'm sure you know that feeling....!
Please pray for them as well as all the children there, that you are surrounded by.
Non of us know what you feel like, or what your day is like. No one knows but you and the Lord.
May God bless you with good health, much strength, and lots of wisdom to do what is needed.
Praying for you all....each and every day!
Thanks for all your updates!!
Love to you all!!
Amy, I dont even know what to say.....except take comfort in the fact that even when no one else understands how you feel in this situation the Lord always understands. He knows how you are torn inside and you can 'dump' it all on Him. Im praying for you guys all the time. "the Lord is near to the brokenhearted and saves the.crushed in spirit..."
ReplyDeleteI agree wholeheartedly with what others have spoken above and continue to pray for Hope and for all of you. Peace to you.
ReplyDeleteAmy - my heart breaks as you describe watching Hope struggle. I understand your fight to be brave and trust God - and she isn't even my child! We are praying! But please - do continue to protect your sanity and ask for/accept help... We all love you & your family.
ReplyDelete"I sought the Lord, and he heard me, And delivered me from all my fears" Psalm 34:4.
ReplyDelete"I waited patiently for the Lord; And he inclined to me, and heard my cry, He also brought me up out of a horrible pit; Out of the miry clay, and set my feet upon a rock, And established my steps. He has put a new song in my mouth- Praise to our God; many will see it and fear, And will trust in the Lord." Psalm 40:1-3
You are doing wonderfully Amy. Strangers are coming to you and Hope, because of your sweet little girl and your unquestionable faith :) Don't let naysayers get you down... Idle hands make for idle tongues. Praying for you and your family, and that God will carry you through this. Also praying that God will show you a miracle tomorrow :) Take Care
Amy, I know you from Joy Bible Camp (Oliveoil):).
ReplyDeleteI have been following your journey for quite a while now and my heart hurts for you. I love your honesty, vulnerability and faith. Praying that the Lord gives you His deep peace and that you are able to rest (even if just for a bit) in the way that you need it most.
As a mother also I get a glimmer of what you may be feeling. Don't allow the guilt to confuse you and rob you of anything.
Praying , Ange Davey Byman)
Thank you once again for your honesty, allowing this huge team of prayer warriors to be specific in our prayers for your family.
ReplyDeleteI am praying from Ontario daily (JBC)
Romans 15:3 -- "May the God of hope fill you with joy and peace..."
Psalm 46:1 --"God is our refuge and strength..."
Prayers too for others that you have met in the hospital along the way -- that they might see the faith, hope, and love in Christ our Lord :)
Amy, may the peace of the Lord infuse you and protect your mind, body and spirit. Unless someone has walked in your shoes they're really not qualified to criticize you in any way. You are such an amazing example for moms. You have others in your family that need you too and the times you can sneak away for a meal, shower and rest are necessary. It's not wrong to feel as you do or to want some joy and a break. Your nightmare needs to end with a happy ending. Praying for a miracle for your little one and for you, your family and those who are your true friends, known and unknown. You are all loved and prayed for. I will pray daily for you all. Jesus is right beside you even when hope's are dashed and things don't seem to get better. He will be your rock and strength and we all will pray you feel his presence and love. When you are weak, He can be your strength, your hope, your peace. Take care dear one. A better mother could not be found anywhere. Hugs.
ReplyDeleteIn Christ,
Elizabeth Gaasenbeek
I am a stranger to you... but from one mom heart to another, I just want you to know that I lift you up in prayer regularly, and read your posts daily. May you know His new mercies this day. And feel His Fatherly arms holding you close.
ReplyDeleteMay He give you all the strength that you need.
ReplyDeleteMy heart goes out to you...I lived in the hospital with my daughter for 7 months, separated from my infant son and my husband....and even now that she's home, everything is hard- therapy, dr appts, gtube feeds and meds, and knowing this could be the same reality for the rest of her/our life....I can relate to wanting a vacation from your own life, and the guilt of wishing for that too....praying for you and with you. Trusting that His grace is enough....that we will soar on wings of eagles and not be faint. May the Lord renew your strength and stir up whatever little mustard seed of faith that you are able to cling to in this moment.
ReplyDeleteOh Amy...I'm praying lots for you.
ReplyDeleteHi Amy,
ReplyDeleteI have been following your blog for some time now. I just wanted to let you know that I would be willing to come spend an evening at the hospital for you and help to give you the breaks that are so important to you and your family! I had cancer 13 years ago as a teen and spent many days at the Children's, then I moved on to volunteer for several years giving mom's breaks. We moved away for several years to work at a bible camp in Manitoba and that brought my volunteering time to an end, but I have missed it since and would love to help out! Feel free to e-mail me at gregandmarni@gmail.com.
Marni
Hey Amy, hang in there. Steph and I always love reading your posts. You and your family are an absolute inspiration to us. We know full well the trials and the emotions that you are experiencing. Fortunately or unfortunately these are feelings we all have caring for a child with a life limiting illness, but this is what makes you such an amazing mom. The balancing act of living life and taking care of your sick child is overwhelming and never becomes easier but having the faith that you have will get you through it. We love you guys and think and pray for you often.
ReplyDeleteNeil
I have always been so in awe of your families faith. Your prayer life and journeys have been inspiring. I am thankful for what you have taught me, and what you are teaching so many others with how you bravely and honestly face each new day but somehow giving the day to God; to his power and control. I am thankful that you can love God and know he loves you so very much. That you are his child and Hope is in his hands.
ReplyDeleteShe has given people a reason to renew their prayer life. Thank you for sharing your story.
Prayers and love