unrealistic expectations

at 7… one IV failed, again, let’s fish around and get a new one.
at 8… worrying about danny’s unfinished valentines that he needs to take to school school today. i want to be home to take care of these little things for my babies
at 8:20…. dixon here to drop off laptop and phone charger. he is very tired and can only stay a minute to keep me company. i was very sad and lonely when he left.
at 9… trying to get my brain functional enough to do the FAFSA form for Emily, due tomorrow.
at 9:05 … called Sam to do the addition because i couldn’t figure out how to keep the calculator open and the FAFSA open at the same time and finding a pen to write the numbers down was just way too hard.


at 9:15…. evening dose of blood thinners, new IV is not working.  nurse pulls it out and awaits the other IV specialist nurse, the first one refuses to stick me anymore.
at 10:00…. severe shortness of breath, respiratory therapy here to help.


at 1020… new bunch of nurses start working on sticking and sticking and fishing to get new IV. because antibiotics are ready to go, too.
at 11:00 … talk with emily, who has fixed danny’s valentine problem, about FAFSA, learn that we also have to do something called CSS. which requires a credit card. we have to pay money to tell a different organization exactly the same infomation as the first one… of course I don’t have a credit card with me, so it will have to wait.
at 11:20… fever up, heart rate up, pulse ox down, i think it was the FAFSA.
at 12:00… IV team back again to get another IV because I need to have two. and i only have one arm they can stick because of the lymphedema.
at 12:25… drift off to sleep, in tears because i feel so crummy and I miss my babies and this whole thing is way too hard.
at 12:45… nurses wake me up for medicine.
at 1:00… try to go back to sleep again, just could not stop those darn tears, considered calling dixon but I knew that if he knew how sad I was he would drive over here to try to fix it and he has to go back to work tomorrow, so i decided it would be best not to call him.

 

Fast forward to this morning;
at 6:00 nurses bring in morning meds. gosh that’s a LOT of pills. i am having a hard time with the timing of coughing, drinking water and swallowing the pills.
at 6:15 … call dixon to see how everybody’s doing. he sounds like he has it all under control. i don’t know if this makes me feel better or worse.
at 6:20… oncologist comes in for morning rounds. i asked him if i could go home today. he laughed. big belly laugh. i was telling him i missed my babies and burst into tears. that started the coughing back. which causes the most awful pain on my side where the pneumonia is. so i cried harder. oncologist goes to find me another box of kleenex.
at 6:25…. oncologist tells me that I have unrealistic expectations, and that holding on to those is only going to make me feel worse. he reviews the plan for the day, labs and scans and which specialists are coming… believe it or not, we are continuing my chemotherapy even through this, since I’m on antibiotics anyway, and being watched so closely, he thinks it’s safe, and the risks of stopping and then restarting are high.

so there you go. he calls them unrealistic expectations, I call them the normal feelings of a mama who wants to be with her family. i know the common wisdom is that all mamas want more time by themselves, without little people climbing on them and big people needing various things, but what i want is MORE time with my babies… . so i guess i have to stick with the program here, and get better before I go home. i guess i was confusing “being less critically sick” with “being sort of OK to resume life as usual” ….  Sunday night in the ER was really scary. I don’t ever want to do that again. ever.

87 thoughts on “unrealistic expectations

  1. Your wanting to go home is VERY normal. I felt the same way when I had surgery. I begged to go home every day. Most likely they sent me home too early as I was deathly ill once I got home. It would have been better to stay in the hospital another day or two, but I missed my babies so badly. I wonder how the oncologist would feel if it was his wife or him in that hospital bed wanting to be home. Somehow the perspective changes when it is YOU and not a patient that is sick. I am praying for you to heal quickly, the chemo to work well and as pain-free as possible, and for you to see your babies soon!
    Always,
    Beth

  2. Dear Elizabeth — you are in my prayers. Thank you so much for taking the time to update. Offering up my little sufferings for you. Love and Blessings, Michele F.

  3. (((Elizabeth))) Please know that you and your family have been in my constant thoughts and prayers. I know you already know this, but I want to remind you that what you can expect is that Jesus will never leave you, May you know His presence to be sweeter, His touch more gentle, and His fellowship more comforting, in this time of healing and waiting to go home.

  4. You have important work to do today, Lady…. getting rest and fighting this pneumonia. That is what will get you back home to your babies the fastest. Let someone else take over the forms for a bit. I know this is so hard. We are all here supporting and praying for you. And although my head says you should not be blogging right now, my heart feels better hearing from you. Thank you.

  5. Oh precious friend! My tears join yours. I have long believed that tears are a form of prayer – the wordless groanings of the heart that the Holy Spirit knows. I weep with you from afar. This, too, shall pass. For what it’s worth, the FAFSA & CSS brought a lot of stress to this house too. I just wasn’t wearing a BP monitor as hubby and I bickered about whether or not we have a mortgage. (You’d think that answer would be straightforward, wouldn’t you!) You remember: hubby’s next WordFeud word was “SNIT”. “Passive aggression, any one?” Hugs and prayer!

  6. Dear Elizabeth,
    We are sending you Texas-sized prayers and hugs. The Lord is holding you in the palm of His hand; it is so very obvious! God love you and know that you are in our daily prayers.

  7. Elizabeth,
    Many prayers for you and your babies!
    One word if warning…here in Louisiana there is never a chg to fill out FAFSA. We were told never to pay anything and if a site requested payment then it is not the official site but one that resembles. There is no chg for filling out this information. Not sure how it is in your state but make sure you have the official website. I’d give it to you but Should make sure I have the correct one has well. Let me know if you need it.

    • Thanks so much,,, we actualy have run into some of the scan FAFSA sites, but not fallen for it, thank goodness. the problem is the CSS form, which is through the college board. it seems to require the exact same info, but quite a few schools require both. And of course, anything the college board does requires money 🙂 Oh well. Emily’s worth it, and we want her to be able to choose the best school for her needs, not just the least expensive one. Thanks for watching out for us 🙂

  8. I hope that you can be home with your babies soon. I am praying for your recovery and for peace. Thank you for keeping us posted.

  9. Dear Elizabeth, I have been praying a perpetual novena to Blessed Elizabeth of the Trinity for you since last May. You are such a beautiful woman, a real inspiration to me.

  10. Oh, Elizabeth, coming from you those expectations are not high, but I think we’ve all come to know you are not just a “MOM…you are SUPERMOM” ! But as Supermom remember you’ve done a terrific job teaching them to look after each other. I know it’s hard being away, but those children of yours want to help you get better, so do as those doctors say and I know they are going to work extra hard to get you back to those babies,

    It’s so hard to express in words how much we need to comfort you, because actually you do more inspiring and comforting in one sentence than I can in volumes…(which I still can’t get over you telling me “I’m not good at writing the stories, I just like to scrapbook”…let me say I don’t blame you for not showing us your “gift” then…you would have NEVER gotten to “play”…we would have all been gathered by your books to read…instead of marvel at those beautiful “Club Scrap” pages!

    Always praying for you and your family,for peace, comfort and healing.

  11. Dear Elizabeth, My children and I are praying for You! I couldn’t stop thinking about You and I got up in the middle of the night to pray for You. The peace and love of Our Lord to You this day.Thank You so much for updating us!!

  12. Elizabeth,
    I’ve been a lurker for a long time and just thought I would add my words of encouragement and prayers of support with the rest here. I will have my babies praying for you and your babies. You inspire me to live better each day.
    Love,
    Kim

  13. Just found your blog, sister. Woke up this morning down and out because of my recent chemo…healing drip. Please know that I will lift you up in prayer so that you can soon get back to your precious children.

  14. Hi Elizabeth ~ Can I just copy and paste our dear friend Harriett’s kind and gentle words? She always knows exactly what to say! 🙂 Lots of love and gentle hugs – we will continue to keep you in our prayers!
    (I miss seeing you and your lovely scrapbooking pages every week – AND OF COURSE your gorgeous photo subjects!) Love,your long lost travel agent/scrapbooking friend Lynette 😉

  15. Dear Elizabeth,
    I have never met you, but I love you.
    I “found” you via Ann’s blog.
    It’s Tuesday so it is my Danny’s day to pray at the breakfast table.
    So know that a 25 year old man of few words and that extra chromosome
    has prayed to Jesus for “Elizabeth to be healed”.
    We are reading Psalm 118:

    “Give Thanks to the LORD for He is good. His Love endures forever.
    In my anguish I cried to the LORD, And He answered by setting me free!
    The LORD is with me; I will not be afraid The LORD is with me; He is my Helper.
    The LORD is my strength and my song; He has become my salvation.”

    I am so sad that you have had such a difficult time.
    And I am so amazed by the beauty of your life.

    connie & family Petrolia Ontario Canada

  16. Praying for you and your family. My Mama’s heart sheds tears with you and I pray you are re-united soon. Thank the Lord for Emily and Dixon to hold things together for you.

    Much love, hugs and prayers!

  17. Oh sweetie. i wish there was something i could do or say that would make it better. I know we’re (most of us) strangers in the internet … Praying for you and your family. I understand so well the longing for more time with your babies, to be with your babies. The hardest thing I’ve ever had to do was say goodby to my babies before being wheeled in for brain surgery. Removing the tumor itself was a snap. Saying goodby was horrible. Being away from them for a week in the hospital (though they visited every day) was horrible. Praying you will be well enough to be home sooner than soon.

    Gentle {{hugs}} Many prayers,
    Ellie

  18. You are such a hero to me, Elizabeth, and one of the bravest warriers on the planet. You hang in there, take it minute by minute when you have to, and soon you will be home with that beautiful family of yours. I am so very sorry you are having to endure this and my prayers and thoughts are with you. I hope you are feeling the love coming at you from all over the country this Valentine’s Day.

  19. Dear Elizabeth,
    I’m sending you a mess of hugs and prayers from Michigan. Hmph…unrealistic expectations…this oncologist is a man, right? ;o)
    I will also pray for Our Blessed Mother to keep her mantle over your dear children, and for her seeking immediate intercessions for anything they need, until you are able to be there!!!

  20. Oh they aren’t unrealistic expectations, they are great big mommy love expectations. And phooey for the laugh they created. I remember a doctor laughing at me when I asked about my NICU baby coming home before Easter (which was 4 weeks away). It generates tears that have no flow control. Doctors shouldn’t laugh when a mom/patient asks a question, never. I haven’t commented before but been following you through Elizabeth’s updates. I pray for a good day for you, peace with the college process (we are hitting that next year), and much more Mommy time for you!

  21. In our family Rosary from now on, hope you are feeling much, much better soon- as the above poster said, you must be getting a lot of souls out of Purgatory and giving great glory to God by that, God bless you and may Our Lady keep you safe [prayers]

  22. Oh dear Elizabeth, you dont’ know me but I have followed your story through the hearts of others and your blog. Praying for healing and strenghth for you and your family. Also for you not to feel so lonely, as so many people hold you in there prayers.

    LAura

  23. Elizabeth, We are praying for you here in Indiana. We have sent special pleas to St. Bernadine of Siena, patron saint of lung problems. May God bless you and keep you.

  24. God’s ears are ringing with prayers being said for you, Elizabeth! Thanks for sharing from your heart today. Maybe God just wanted things set up so that you wouldn’t have to cook or do dishes on Valentine’s Day, and this is the only thing that would work?

    XO

  25. Oh, Elizabeth! I have a huge lump in my throat right now. I hate to be away from my children. I have seven of them, and I like to keep them close. My youngest (age 3) is sleeping in my lap right now, and as I read your post, I was thinking how hard it would be to be separated from her. May God bless you and your family… you are in my prayers daily. +JMJ+

  26. Never commented, though I’ve lurked long. I’m just starting the Mama-journey, but you inspire me. I just wanted to tell you I’m praying for you.

    Love,
    Jenny

  27. We don’t know each other so I hope you won’t take offense at a stranger chiming in.

    First, it is SO HARD to put yourself first when your family needs you. But you need to focus your energies on fighting infection and healing. You can’t do that if you are focused on what you are not getting done and what is happening at home where you can’t be. Try to let go of some of that. Things may be chaotic in the short term, but in the longer term they need you to be strong (and abel to be home!) more than they need you to be on top of the little things today.

    Second of all, your daughter should contact the financial aid offices at the schools to whom you going to be sending the CSS Profile (its full name). Yes, there are deadlines, but life happens! Any financial aid counselor worth their salt should be able to promise that you won’t be kicked out of the financial aid queue for missing the deadline under THESE circumstances. This may be a hassle for your daughter, but it’s good to get used to dealing with offices over stuff like this–there will be a lot of it in college! (I should know, I work at one!)

    All best wishes to you–you’ll be in my thoughts.

  28. My dear Elizabeth, I can’t possibly add anything of import to what has already been written, but know I cry with you and pray for you and your babies and Dixon. Nancy

  29. Dear Elizabeth,

    I know how it pains you to be separated from your darling children, however, know that they are in the Lord’s care while you recover. We’re praying a special prayer to St. Peregrine for your healing from the cancer and pneumonia. I am sorry you are feeling lonely, but don’t be. We may not be there physically, but our prayers are coming to lift your spirit, and God never leaves you. Hang onto that hope and faith.
    Get well soon!
    Denise and family

  30. My heart aches at what I know to be a mother’s worst pain..being away from her children. The fact that you continue to be an amazing mother in the face of physical pain and illness is remarkable. You are a fantastic supermom even when you are not able to be home. Prayers that you heal quickly and can get back to being where your heart longs to be.

  31. Can I just tell you Elizabeth, that you have the MOST AMAZING Family?! Every day smiles, kind words, and leaving an energy as they (any ONE of your children and Dixon too!) pass by that all is good in the world (and maybe its more-everything is exactly how it needs to be right now–I’m not sure). This is totally amazing to me. Everyday you meet and plow through challenges…but never alone, always together. This sense of family that ya’ll have is so admirable and I continue to use it as an example, a source of inspiration as we meet our family challenges.
    You continue to do such a tremendous job with your family. I can see why its so hard to be physically parted from your family-you are all one machine, one unit, one family that functions….together. Know that even physically apart-spiritually you stay connected.
    Mia and I pray together for you and your clan every night. Strength, courage, love and light my friend, my neighbor…my inspiration.

  32. Dear Elizabeth,
    Oh I feel for you missing your babies. I can relate even when I am not away long.
    Please be assured of our prayers to add to all those other wonderful people.
    Rest and do as you are told, lol, so you can get home soon.
    many prayers and hugs
    Gae

  33. Elizabeth, I’ve lurked for quite a while, and have been so inspired by all that you do. My prayer is that you can rest and recover to be back home with your sweet babies soon.

  34. Still praying for you everyday. God is with you and I can’t wait to hear that you are back home with your babies and their daddy. You have been a tramendous inspiration to me and I thank you for sharing that gift with me.

    God Bless you and heal you from all this suffering,

    Janice

  35. Oh, sweet Elizabeth, count on my prayers. I’m praying you’ll be home with those babies soon.

    Also, thanks for the reminder to not take this mothering gig for granted. The next time I find myself pining for some quiet or some space, I’ll offer it up for you, dear friend.

    Peace and prayers now and always…

  36. Elizabeth, you prayed with me through my tough hospital stay.. I’l pray you through this one. I am waiting to hear of your post where you are back home again with your babies!! You are an inspiration to me. Prayers heading your way, St Matthew Karol, pray for this sweet mama!

  37. Hi Elizabeth,
    The Freeman clan is praying for you and hope you can be back home with your beautiful family soon. We are gearing up for Virginia Suzuki Institute and your family is a big part of that. Sending you love from all of us.
    Nan

  38. The Jackson family is praying for you as well! If any of the children want company when it is time to practice, let me know – we can Twinkle together anytime! Much love to you, Elizabeth!

  39. (i was sure i’d left a comment yesterday but i don’t see it, so i’ll try again):

    elizabeth, i love you and i am praying for you and all who surround you. i am ready to get hit the road and head your way if you need me to, if that would help in any way all you or dixon or the kids have to do is ask. {{{HUGS}}}

  40. Many good thoughts, warms hugs & lots of prayers to you–
    I am a friend of Pattis’ 😉

    Also a cancer mama–both ways–my son & myself( 174.9 2 times)
    Email if you ever need someone to liste

  41. HI Elizabeth, I am Patti’s mom and Lily Anne’s Grammi. My prayers are with you Eliabeth as if you were my own daughter. I will trust in the Lord to help you and your family throught this. “Jesus, I trust in You. Please be Elizabeth’s strength for all that she needs to go through. Be with Elizabeth and her family, let them know You are there. I ask this in Jesus’ name. Amen”

  42. I stumbled onto your blog a few months ago, and although I don’t know you, you are on my mind and heart so often. Just remember that although you cannot be with your babies right now, they will never, ever doubt your love for them. They are blessed children, to be a part of your life and your family. Just concentrate on getting better. You can love them and pray for them wherever you are.

  43. Unrealistic expectations, be they great or small are a seed of faith and hope….my DH was told ” Hank, you have unrealistic expectations” many times over the 30 some surgeries he had to save his leg after a critical injury he sustained while on duty as a Denver Motorcycle Patrolman. He now has a shorter but very functional left leg which was our hope and expectation, praise be to God! Add Hank and I to your prayer partners to achieve your expectations Elizabeth.

    Hank and Candy Terry
    The Colorado Cranker

  44. Elizabeth, we’ve never met, probably never will, but I just wanted to remind you that thousands who you don’t know are lifting up your entire family in prayer. We’re praying for your comfort, strength, peace and healing. May you have an overwhelming sense of God’s presence as you endure this health journey. Praying to the “Ultimate Physician”…..

    Nina
    Atlanta

  45. Elizabeth,

    I don’t go into Facebook very frequently. I just opened it up today and read your blog. My heart and prayers are with you. I wish I could be there to give you a hug. We pray for you each day and will be sending more prayers your way.

    As others have said, if there is anything I can do for you let me know. It is a short trip from here to you.

    I love you,
    Faith

  46. hugs to you. read about you on Ginny’s blog. hopefully you’re doing better by today. pneumonia sucks! and so do iv’s. i’m sure you don’t want a pic line though. take care & rest…stress is bad for your heart. have faith that your helpers are taking care of stuff. my husband used to go out of town for work frequently & i truly believe things are harder on the person that is away. and my 18 yr old did her own fasfa! delegate!

  47. Our family is praying for you and your family! Keep up the good fight! You have a lot of people praying and thinking of your family! Best, Shannon

  48. I’m praying for you also. I can only imagine what it’s like to want to serve your family and have to stay away from them. Hugs. I know God has them in His care the whole time, but He gave you the Momma heart to protect and nurture them as well. Try to rest as much as you can (I know–easier said than done in a hospital) so you can recover and get back home to them.

  49. Dear Elizabeth,

    Praying for energy, healing and strength to be poured into you and also a bunch of time to see your babies. Get well wonderful warrior….much love from a stranger across the ocean xoxo

  50. I’m another reader coming out of lurkdom to let you know that I and my family will be praying for you. I stumbled across your blog when I was looking for Catholic blogs about three years ago when our youngest son started Catholic High School …..we are not Catholics but my son got a place because of their pastoral ministry ( he has autism) and I wanted to research the culture he was going into, I tried formal websites but I discovered a learnt more by reading about people actually living their lives.

    Fast forward to his third year at school and I don’t need to research so much,he’s telling me things :0)
    But your blog made an impression on me and I have kept reading, albeit intermittently…..I find you inspirational and so very encouraging. Sending prayers and healing thoughts from the UK

    Sue

  51. Oh, I just found your blog through Patti’s blog!! My heart truly goes out to you. And your expectations are not unrealistic. They are perfect expectations because you are a mama. I am going to be praying and praying for you, and I will have my church pray as well at our prayer service. I had a serious health trial this last summer; I was battling for my life. God did carry me and is carrying me daily. I know He will carry you as you depend upon Him. He is our Rock and ever present help in times of trouble. May His Unfailing Love surround you right now. I will fight for you in prayer. I know the comfort of knowing that people are seeking the Lord on our behalf. God is SO good!! Much, much love to you.

  52. Elizabeth — Sending you prayers and positive healing vibes across the miles and in honor of having known each other so long ago. Your life and your writing is amazing. Thinking of you in New Hampshire.

  53. I’ve only recently found your blog and I’ve found it a huge inspiration. I’m praying for you too, and I’ve put St Mary Mackillop, Australia’s very new saint, on the case. She’s a formidable, feisty woman, and I have personally witnessed one of her miracles first hand. I think her intercessions have considerable force.

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