Carmen had a horrible day yesterday. When Dave let the night nurse go, Carmen’s oxygen was 70-80%. Carmen was on 3 liters of oxygen and still unable to maintain her numbers. She was taking 80 breaths per minute and looked to be in terrible distress.
We were surprised as the day before we had gone out for the day and Carmen had done very well.
We called Hospice and the on-call nurse came out. For several hours we talked through our options and what we want for Carmen. We are not treating illnesses anymore with antibiotics but simply trying to keep Carmen comfortable.
All day we alternated Tylenol and Motrin, trying to reduce her fevers and keep her comfortable. We gave her morphine every two hours.
Last night we went to bed, fully expecting Carmen to have a rough night. We set our alarms for every two hours so that we could give Carmen morphine. At 2am, Dave checked on Carmen and the night nurse said she was doing well so he did not give her morphine. At 4am, I went in and Carmen was peacefully sleeping so no morphine. At 6am, Dave checked again and she was still doing well. At 8am, the night nurse told me that Carmen did not have a fever all night. In fact, she put the heating pad on her because she was cold!
I felt immense relief this morning at 4am when I saw Carmen calmly sleeping. I have accepted the fact that Carmen is going to die but I cannot stand watching her struggling to breathe. I can’t stand it. Whenever she gets like that, I pray that God will spare her suffering and just take her home.
I’m not sure yet how this day will progress for Carmen. I did give her morphine a short while ago and also an extra dose of Ativan to calm her breathing. She does not have a fever. Perhaps she will pull through this.
Dave and I have talked until we are blue in the face. There are so many decisions to make for Carmen and none of them are easy. We feel confident in our decision to stop treating illnesses but the guilt does set it. Especially when others express disapproval of our decisions as if we make any of these decisions lightly. I sometimes wonder if I am the only mom of a child with Tay Sachs who goes back and forth in my thinking so much. I wonder if the road is much clearer for others.
We want Carmen to be comfortable. We don’t want her to suffer. We look at her quality of life and think that she will be so much better off in Heaven. And honestly, we are all tired. This is an emotionally and physically exhausting journey. But, then we look at her and realize that this little person has had a more profound impact on us than anything else ever could. We are grateful to her and we want to make the best decisions for her. She is our daughter.
This picture has nothing to do with any of the above but made me smile today.
Hope and her daddy
praying for you and your family through all this
You know what Carmen is going through more than anyone else. Many may look at your decision and frown on it but knowing how much you love her, I am sure your decision is correct. As Christians, we see things so differently. We know that Carmen will be in heaven when the time comes. God promises us that. I know it will be hard on you all but God will take her when the time is right. That time is only known by God and if you were or were not treating her for the Tay Sachs. When God calls her home, it will be a glorious day for her. She will meet her two great-grandfathers and her great-grandmother. They will be ready with open arms, ready to introduce her to our Lord. Please don’t beat yourselves up for making the decision your making. You are doing what is best for Carmen with love in your hearts.
What a beautiful picture! It made me smile too!
You and Dave love Carmen as only parents can. How anyone could think you are making any decisions lightly is certainly beyond my comprehension. Anyone following your journey would know how very much you love her and how much you only want what is best for her. I believe that God numbers our days. If Carmen becomes ill she could still die even if you are treating her. Or she may recover to live a long time if you don’t treat her. God is in control. If you are trusting in Him, He will direct your path. Guilt is not from God – it is a lie from the enemy to keep you down.
Thank you for sharing your heart. Know that I am & will be praying for Carmen & all of you. May God bless you with His peace!
Blessings, Marilyn
Dear Lana…. Keep pouring out your heart to all of us. We’re listening and lifting you all in prayer. And, to let you know, your prayers are the same as ours. But God…..
Also, thank you so much for ending this message with this terrific picture. That’s a keeper….
Praying for you, Dave and the girls.
Hi Lana! Hope Carmen continues to surprise and gets better soon! I promise, ALL Tay-Sachs parents struggle with their care choices. There are no right or wrong choices – only the ones you can live with. We recommend parents get into a calm place and listen to their heart, it will lead them down the right path.
Hugs and prayers,
Kim
Lana, I admire you so very much as I read your words and see your heart. I am in awe as I remember the quiet, respectful and very beautiful little girl who was in Sunday school with all those boisterous boys out at Believers! Seems like only yesterday, and now you have become a wise and loving wife and mother. God has prepared you exceedingly well for some tough challenges. You inspire me, and surely many, many others–as I see you accept them without complaint or hesitation. May God give you and your precious family an abundant life as you seek to honor Him. God bless you, sweet friend. You and yours are in my prayers.
Hi Lana, Is a long writing for me
)not one of my best days but I try to share. I am sad for any people would question you and Dave. I can’t know the weight of your every day or your mind but I know your heart. I pray you be at peace with yourself today and 10 years from now. You two are the best parents Carmen could have, don’t ever let any one tell you different. Love to you all, Joe
This journey is your own, and NO ONE should ever judge you on the decisions you make. You are making them under the guidance of your Heavenly Father, and His grace and blessing is all you need! I’m so sorry that folks are so quick to judge you, and I pray that you will have peace…..
Now I understand your comment on my Facebook status about decisions! You love Carmen, and that’s the most important thing. Because I know that love motivates your every decision for Carmen, I know that you will do what’s right. Decisions made out of love are right decisions, no matter what happens.
Jesus, keep holding Carmen, Dave, Lana, Lauren and Hope–we know that You never let go! You have counted every one of Carmen’s breaths. We know that her life is in your hands. Help Dave and Lana to make wise choices and to trust that You are in control of it all, no matter how they decide. Amen.
Lana (and Dave), I don’t have any doubt that you’re doing the right things for Carmen. I’m afraid that if I heard someone tell you otherwise, even if the advice or suggestion came from a well-meaning person, I wouldn’t be happy. I trust in God completely. I trust you guys completely in all things, especially with the excellent care of ALL your daughters, which you accomplish everyday. Please know that you are in my thoughts and prayers very often and please also remember that as much as I love you, my love pales in comparison to the depth of agape unconditional love which God Himself shows you. Love always, Dad
Hi Lana and Dave,
I know from being with the Anderson’s and also with the Cairns family that people will always second guess. I believe in my heart that what you are doing is absolutely right for Carmen and as long as you make your decisions in a prayerful manner, they are the right choice. My prayers are with Carmen to be comfortable and I know you’re doing everything in your power to achieve that goal.
As for the picture–PERFECT!!!
Praying for you all.
YOu should never be troubled by the comments of others who would show disapproval of your decisions regarding Carmen. Everyone knows you love her with all your heart and then some- everythign you do for her is out of love – pure and simple! I think it is human nature to second guess ourselves when we make any decisions reagrding a loved one. Do not burden yourself with the opinions of others ….the only ones that mattter are yours and Dave’s! You are always in my prayers!!!
I am sorry that your family has had to face such difficult decisions regarding your beautiful Carmen. Yet I know, as you say, that God has effected your lives in many amazing ways by allowing you to love her and be her family. I can’t imagine how hard your journey with Carmen is, as you love her so deeply and yet yearn to see her whole in the arms of the Lord. What a picture that must bring to your mind, of Carmen being healthy and vibrant in heaven! Of course only Christians can understand, and even at that, not anywhere near be able to fully comprehend what that truly means. But longing to see your daughter healed for eternity must bring the reality of heaven much closer to your hearts.
Though you would probably not in a million years want to be admired, still I do admire you for the difficult job of parenting a child with difficult health issues. Situations such as yours should so remind all of us that life is in no way about us or about our comfort or happiness, but about living out God’s love and shining forth the Gospel.
Thank you for sharing your heart and your family. The picture of Hope and her daddy is great!
Your love and God’s love for this little girl will guide you in the right path. Trust that. What you do, you do out of love for her. There’s nothing to question, especially for those who have not walked in your shoes. Wishing you peace.
I hate that Carmen is sick and struggling to breathe at times. I will pray for her to not suffer. I will pray for you all as well. Hopefully she will be better soon.
And I LOVE the pic of Hope and her Daddy it is PRECIOUS!!!
Lana and Dave,
I pray that you allow yourselves to be the great parents that many know you to be. The decisions you make now will be the hardest ever I am sorry you have to go through this but your love for Carmen is what will allow you to be selfless and act in her best interest. I think of you often and pray for peace in your hearts.
Love,
Helen Brewer
You two are so strong. Your Faith is inspiring. Whatever decision you make for Carmen, in any given moment, is the absolute best decision that you can make. Do not allow anyone to take that from you.
Thank you for all of your encouraging words.
Hi Lana & Dave,
You don’t know me, but I am friends with Rashmi & Beth and have been following your blog for a while now. I had to comment today because I wanted to say that I think you two are so very strong and admirable, and I think you guys are making the best decisions for your daughter, no matter what others may think. YOU guys know what her quality of life is, follow your heart and be at peace with that. We know that her next stop is a wonderful one, that brings me peace, and I only know her through your posts. Your family is often in my thoughts and prayers.