What a tough few days these have been. Wait, what a tough year and a half! You always hear about those "roads less traveled" but for our family, this feels like there is a forest ahead with no path in sight. We have no expectations, nor do the doctors really, to know what is coming in the days to ahead.
When I say that Amanda has not been sleeping, it has not been an exaggeration. We have been pulling all-nighters and for the most part she is in discomfort and pain and not easy to console. Finding a comfortable position is difficult and her left side has continued to weaken. It has been a trying time.
Hospice has been working on finding medications that might help, but the past few nights, more like weeks, have not been pleasant. There have been many tears shed and moments of simply feeling lost. Just like from day one, Amanda is super sensitive to medications, and this process has been no different. It is finding the right balance of the correct medication and the proper dose for Amanda. After our meeting with our nurse today and consulting with our doctor, I think we might actually have a cocktail of medicine that is going to give us all some better sleep and make her more comfortable.
With better sleep, hopefully Amanda will physically and mentally start to feel better. I can't imagine how difficult this is for her - both emotionally and physically. Middle of the night talks are some of the most raw and honest ones. Ones that break your heart and make you wish for the thousandth time that you could trade places with her.
Hospice has been amazing. If you request something, they are quick to get it to you. They deliver things to the house and help set up if needed. I am just thankful that they are here as another layer of support for us.
We got a hospital bed for her today, but we call it an adjustable bed. That was a hard, but good, move. We felt that if we went ahead and got it now, it would be her choice to use it, instead of the day that might come when she would have no choice and have to use it. This afternoon she slept better in it during a nap and she likes the freedom it gives her for comfort and being able to have more movement by adjusting it. What a huge praise! As I realize that those will be the types of joys I look for as we walk through these upcoming days, I would like to think I am getting better with that reality...
So the journey continues. We continue fight the fight and trust in God's plan for our family. We will continue to pray for healing. I will continue to have tears and moments where my heart breaks and I wonder how I will move forward. And that's okay.
Psalm 56:4
When I am afraid; I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid.
Psalm 56:8
You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.
Isiah 40:31
ReplyDeleteBut those who hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary, they will walk and not be faint.
Continued prayers going out for Amanda, for you, and the rest of your family.
I know that you are the voice of millions, of all the parents that have yet to find the courage to share their story, their struggles, and their heartbreaks and triumphs, and I know that you, in your boldness through Christ, even on your weakest days, are such an encouragement to them. For them just to know that they are not alone in these human struggles, these human emotions, these human frailties...that someone is strong enough to admit their fears, their pain, and their heartbreak. You are a lighthouse of encouragement and strength. May God continue to strengthen you and give you paths of encouragement in which to lead us all down.
ReplyDeleteMay God Bless You All.
...praying...
ReplyDeleteWe are prayer for your family. Stay strong and trust in the Lord. Allow Him to take all of your burdens and replace them with His peace.
ReplyDelete