Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.


on January 10, 2014

Yesterday Agnes took a turn for the worse. Her overall condition has been described to us as “critical stable.” And, “fragile.” And, “terminal.”

We have heard the words, “there is nothing more we can do except help her to be comfortable.”

Agnes is comfortable right now, and she is stable within her very fragile balance, but it is also clear that her body is failing.

After all this runaround about her shunt, it turned out not to be the deciding factor. Her ongoing trouble with pulmonary hypertension is what now her “terminal” condition.

In a nutshell what is happening is the pressure in the blood vessels going to her lungs is so high, that the right side of the heart has to work extra hard to move blood. The right side is enlarged, to the point where the left side is being compressed. Agnes’ heart isn’t able to keep up and so blood is backing up in her veins, unable to get to the heart to be re-oxygenated and sent through the arteries to her her body. Blood is backing up and with nowhere to go, fluid from her vascular system is seeping out into her tissues. The slowdown in circulation is affecting her organ functions. There is not enough blood flow to her liver, kidneys, and intestines. She is not absorbing nutrition from food, or her medicines. Her lungs are very stiff because of the inadequate blood flow so her ventilation needs a lot of support.

They could try to fix her shunt, but with organs in the process of failing what good would an operational shunt do for long term? The shunt is small potatoes. The biggest issue now is that the problems are affecting nearly every system in Agnes’ body.

She is dying.

There is always time for a miracle, and we haven’t given up hope for one. We are also talking with palliative care about Agnes’ end of life options and what we feel like we could or should do. We are always striving to make the best choices for Agnes. Right now she is behaving so we have some time to think and pray. There really is no telling how much longer Agnes will hang on. She is the boss lady. In any case it does not appear at this time that Agnes’ death is imminent–at least not in the next day or two. So that’s a relief.

Fr. Sal did allow her to receive Eucharist last night, in her own way. She got to lick the Body of Christ and I consumed the rest of it. I know she doesn’t need that sacrament because she is a baby and pure and sinless, but I wanted her to have it.

I do plan to write a beautiful post about what I’ve learned from Agnes, about the meaning of suffering and the power of prayer and all that stuff. When I feel like I can get through it! Hopefully I will be able to manage that soon.

Thank you all for your continued prayers.

21 responses to “Terminal

  1. JeneaSwainston says:

    Sobbing with and for you as I read this post…
    I know you and th medical team has done everything and for Agnes, her release from this world will mean tha she is comfortable and walking hand in hand with the Lord…My heart is breaking for you, Jeremy, Stephen and the rest of your family…prayers for God’s will and your peace with it all…

  2. Nothing else matters. Time is standing still, I’m sure. Do whatever you have to do to bring peace and collect all the love up that you have to give her as she goes. She is one spunky little princess and she is such a fighter! Isn’t it amazing how a helpless little imp like her can fight! So totally trusting and pure. Feed me! Help me! change me! Then she just rests with that spotless, virginal skin, those rosy lips and translucent eyelids and cracks a smile and says, “Ok, thats better…” We are slaves to our children. We didn’t ever realize that we could love this much! Take lots of pictures and create a lasting memory. I’m so glad she was able to receive the body and blood of our Lord Jesus. What a wonderful gift. Our Lord only rests in the most pure of hearts and when we receive him, we can only hope he can find some small place in our sinful body and mind to rest. He must have found a feather-bed of comfort in Agnes’ body. Because inside she is him, outside, she is him, broken and frail. My thoughts are with all of you as you go forward.
    Peace sister!

  3. Amber says:

    Praying for you and your family =( Also I think it’s pretty awesome that you did the eucharist with her, the Eastern Rite does it as a matter of course I believe. ❤

  4. St. Agnes, pray for her.
    Mother of God, pray for her and keep her in your protection!

    Stay strong, mama! Everything will be as God wills it.

  5. Laura says:

    oh, Judy, I am so sorry. Words fail, but please know that you and Jeremy and Agnes and all your family are in my prayers, for peace and love and comfort.

  6. Patti Dunbar says:

    The messages above are so beautiful in response to the moments Agnes and all of you are going through. We will pray. Love to you all. Patti and Tom

  7. Jennifer says:

    Dear Judy, I am so sorry that your journey with your little precious one is coming to an end soon. I know you’ve savored every minute, and so has she. I’m glad you’ve gotten at least this much time together. We will continue to keep all of you close in prayer. -Jennifer


  8. Juliana Tomingas says:

    The sentiments that have been expressed to you in these comments are so powerful and moving. I couldn’t add anything. The Body of Christ is an indescribable wonder. You shared it with your precious Agnes today, and you are experiencing it through the words of your dear friends and family. What else could possibly carry a mother through such torment?

    God bless you, sweet little Agnes. You are too pure for this world. All my love…

  9. archaeologycat says:

    My prayers for you

  10. vandemom2 says:

    Your ability to form words into sentences in such an expressive way at a time like this in your life wrenches at my heart. May peace envelope you. Your grace is evident, know that all of your decisions for Agnes will be exactly what is best for her. Never, ever second guess yourself. It is clear your decisions will be based on love and faith and all that you know. Bless you all, you are an inspiration. Amazing what a being as small as Agnes can teach this world. Make sure to welcome others to heap blessings upon you, it is a blessing to them.

  11. vandemom2 says:

    I’d also like to tell you that I love your blog title. It reminds me of Truvey from Steel Magnolias who said “laughter through tears” was her favorite emotion. That is how I live, also.

  12. Tim and Diane Wiilkinson says:

    We are praying with you for Agnes, and for all of you. Lord, have mercy.

  13. Sara Ridgway says:

    Judy, I remember you from St. Bernards. I am so sorry to hear about poor baby Agnes. I would like you to know that you are not alone in going through having a very sick baby. I had a baby cousin that passed away just this last summer due to heart complications, he wasn’t quit one. Basically half of his heart didn’t develop while in the womb. He also went through many surgeries like your sweet little girl, but his body was too weak. It’s crazy to think how fragile babies are, but it’s even crazier to think that they fight harder than any of us probably would. It’s great that you are sharing your journey with the world; you are strong and brave! I pray for a miracle! And I pray for you and your family. However God plans this, in the end it will be alright. I would like to share a song with you that we sing in the youth group during worship nights.

    Peace and love to you!

  14. Karin says:

    Oh, Judy. Such a little fighter Agnes is and has been. You, too. Jesus continue to protect this family. Love to you 4.

  15. my prayers for you and your family

  16. Althea Fochs says:

    Praying for God’s blessings and grace on you and your family, Jeremy and Judy and precious little Agnes.

  17. Janice and Bill says:

    God bless you…..we are praying for you all. Sweet little Agnes could not ask for better parents to watch over her. I can’t imagine the anxiety and shear terror you are going through. You have always walked with God; He will not abandon you now…..

  18. Blessings on this side of the voyage! I do not know you and had to read this for an assignment…but it really touches my heart as I am in school and wanting to work in this exact field…But your honesty, wisdom, strength is more then any one of my Professors could teach or mirror in the class room or in our clinics!!! You have taught me so much in just a few minutes of reading this!!! Thank you!!! I am sending your family many blessings and prayers both in my Christian style prayers and in my Reiki and Meditations!!! You are a beautiful family as well!!!
    Hugs to you my spiritual friend and family!!

  19. Matthew Habermas says:

    We are praying for you and Agnes. Praying Psalm 20, too:

    The Lord answer you in the day of trouble!
    The name of the God of Jacob protect you!
    May he send you help from the sanctuary,
    and give you support from Zion!
    May he remember all your offerings,
    and regard with favor your burnt sacrifices!
    May he grant you your heart’s desire,
    and fulfill all your plans!
    May we shout for joy over your victory,
    and in the name of our God set up our banners!
    May the Lord fulfill all your petitions!

  20. Rose says:

    We are praying for all of you!

  21. judy says:

    Thank you all for your kind comments and prayers offered. The prayers are working! My family is blessed by your generous hearts.

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