We went to the hospital on the 29th and there are still no signs of engraftment. His ANC is still nonexistent and he received platelets that day (it looked likes chicken soup, the nurses call it yellow jello but it's more like campbells concentrated chicken soup) and only took 30 minutes to administer.
The last couple of days have been especially emotionally difficult for us. All the effects of chemo have really started to take a toll on Connor's body and I think he is just physically worn down. His hair started falling out in clumps and we had to shave his head, his platelets were extremely low so he had some minor bruising and red dots all over his body (petechiae) and mucositis. The mucositis, big red and purple swollen bumps on both sides of his cheeks) is causing him pain and we are really hoping that it won't affect his appetite (he is not eating nearly enough). Connor has endured it all well up until Wednesday night when he just couldn't take it anymore.
As we were getting ready for bed at midnight (I believe that C forces himself to stay awake until this hour b/c he sees that as one "perk" for being here) he was very restless and just could not settle down. I knew that something was wrong and started to ask him where it hurt and what was bothering him and he just burst into tears and asked "why me?" "Why did God give me this body? Why do I have to do this? This is not fair and I am really mad at God right now and I don't think that I will worship him anymore." I tried to explain to him that life is unfair, that everyone has to have struggles but that I believe that God made him special because he has an amazing plan for his life, that by going thru this hardship now, that God is preparing him for soemthing greater that we don't yet know and that I believe that he will help lots of other people in the future. And his response was "does God want me to become a doctor or something ? I am NOT going to become a doctor, why would I ever do this to another kid- I will never become a doctor!" Although this entire conversation was heartbreaking for me at the time, as I was trying to comfort Connor, I realized that these were the same questions that I had been wrestling with the same day for other reasons, and that I needed to hear the answers to these questions also and in some ways it was comforting and peaceful and reassuring to hear my own answers to the unfairness of life. I am not sure that Connor found much peace that night but he finally fell asleep at 2am (it was a very long conversation).
If anyone has any tips on how I can explain this to him, I would be open to all suggestions. It is at times like this when I wish that I had gone into child psychology or read more self-help books or that we were more religious or spiritual as a family or that I had more faith and conviction in the things that I said. Maybe it was my own struggles with all of the above questions that brought on his fears. I am glad that Connor was able to get those feelings out, I hope that it helped just to voice them and I hope that he will be able to find some peace with it all.
I also wanted to thank everyone for your comments. I am trying to find a way to reply to each individual comment thread but have not been able to do so. I really appreciate all our friends and people who we don't know who have lifted us in support and prayer. Thank you so much, it is so encouraging to know that there are so many genuinely nice people in the world.
14 comments:
I cannot imagine what a child feels (or his mother) when the journey is so tough.
11 years ago I received the blessing of PBSCs from a Matched Unrelated Donor. I am half Korean and finding a donor was rare. But I was an adult.
The journey is touch, I pray you hold tight to my favorite scripture, Proverbs 3:5-6 "Trust in the Lord with all of thine heart and lean not on they own understanding. In all thy ways acknowledge Him and He will direct thy path."
Keep the faith. God has big plans for Connor!
If you haven't already, please talk to a Child Life Specialist (to help Connor cope) and utilize Children's ministry services. They are both truly helpful and great at listening and offering support and love and hope.
Ray Lincoln---we saw him yesterday and he is so wonderful! i gave mary jo a brief update. she said that she would pass on to ray. tell connor we love him please.
It must be so hard to explain to a child what we adults can't even fully understand! Sometimes we just need to hear that it's okay to be mad at God. He is a great, big, amazing God who will love you even when you are mad. He just wants you to come to Him with your hurt. Just like your mom and dad!
There are lots of people who went through tough stuff in the Bible.
Joseph, abandoned by his brothers and sold into slavery.
Job lost everything.
After 40 years of wandering in the desert, Moses died within sight of the Promised Land.
Bet they were mad. God still loves them. He might not promise health, wealth, or safety. But He DOES promise to love you through the hard stuff...to never leave you. And that is pretty special!
Praying peace for all of you...peace which passes all understanding. (Phil 4:7)
Stacey Hartman
PS: Josh misses Connor SO much!
I have found that when experiencing a great injustice, the hardest thing to bear is the feeling of victimization and powerlessness. Something I find very comforting is the idea that before my life began, I chose this life. You can tell Connor that before he was born, he was an angel with God and that he knew many of the things that God knew (that he is not allowed to remember while alive). And that there was this life with these challenges and potential rewards / accomplishments, that God wanted someone to have. A particularly difficult (but rewarding) life, suited only for a particularly strong soul. And Connor, knowing what would lay in store for him, chose that life, believing himself strong enough for it. And God agreed and believed Connor strong enough for it. And so Connor was born.
I think everyone, but children in particular, need to feel at least some sense of power and trust in their own strength and ability.
You are going through very difficult times, but are showing incredible strength and grace.
Oh Steph, I really wish I had some powerful insight to share with you. The previous comments were much more eloquent than this is. Abstract concepts are really difficult to understand for children... the future, God...(I guess they're difficult for us to understand too).
I always "offer up my suffering" for someone else. Jesus' suffering had a purpose and so does ours... even though we cannot understand/justify it. But maybe for every hair he looses or every does of med he has to take, he could offer it up for someone... anyone. Maybe that could give him some kind of concrete base for all of his suffering.
Like I always say, you are in my constant thoughts and prayers...
Also- did you ask about the Beads of Courage program? If it isn't there, tell Connor to count up EVERY lab draw, every stick, every med he has to take and I will personally get him a cool bead for each one and he can string them together to use as his badge of honor and courage.
Love and peace,
Teri
Honestly, all of this just stinks. I hate that Connor has to go through all of this, and that you guys have to go through this as parents. Just imagining it is hard for me. I think you WILL have a degree in child psychology when this is all through. It seems to me you are being very loving and very wise with Connor. While you are taking care of Connor, make sure that YOU are being comforted and cared for, too. I'm sure you've heard it before...on the airplane, parents put on their own oxygen masks and then put them on the kids. Make sure you are getting your oxygen during these tough days.
Maybe Connor can be the doctor who discovers cures for these things that are painless. :)
When I am hurting and full of questions for God, I always feel him comforting me. Jesus really cares. Connor can know that Jesus knows what its like to suffer, too. He loves him very much.
I forgot to sign my name on the previous post. And also forgot to say that we are praying and praying and praying..and sending every warm thought Connor's way. Love, The Saffords
May I put the point of view of atheist? I suggest you let Connor rage. There are times in our lives when we do not need someone to be reasonable and comforting. We simply need it to be ok to be angry or hurt, without someone trying to persuade us out of it, however sincere they may be.
I'm not trying to discount or disrespect your obviously very genuine faith. But I reckon that if there is a God he is quite capable of handling this himself. I suggest that what Connor may need right now is just your simple, unqualified acceptance of how he feels, without any attempt to persuade him otherwise.
I hope you will accept my blunt speaking: I don't want to offend. And my fingers are firmly crossed for you all. Good luck.
I don't think there's any good way to explain this to a child. I'm so sorry you are all going through this. I'm wondering if maybe music might help? There's some really good Christian songs (for adults and kids) that might help Conner understand it a little bit better about faith and believing in the tough times.
Also, in general, you may want to see if Childern's has music therapy or offers anything with music. Sometimes getting your emotions out through music can be really theraputic.
You are so strong and so is Connor. We continue to pray for all of you. I lifted you all up in prayer at church. That's an extra 200 people praying for you guys and for Connor!
The Worthingtons.
Steph & Steve,
We hurt right along with you for Connor. I'm afraid I also don't have any of the right answers for why there is suffering, especially when it's a child. I just believe that some day there won't be any at all...and while that's a wonderful day to look forward to, it doesn't make today any easier, I know. We will continue to pray for peace for all 3 of you and that there will be tons of brighter days ahead. Our love to you, the Van Grinsven family
I think what you did - allowing him to express his anger and validating those feelings for him - was exactly what he needed. God knows how difficult this is for him, and for you, and when we go before Him with honest hearts, He honors that too.
I pray that when it becomes too much for Connor to want to praise Him, that you'll continue to stand in the gap and praise God for him as well. And when it's difficult for you, that Holy Spirit will lead your spirit in praise and worship, increasing and sustaining your faith in the One who so lovingly holds your family in His hands.
I'm sorry things have taken this turn. I’m so sorry Connor is suffering. What can we do but try to be with you, albeit right now spiritually, during this pain, keep praying and offer as many ideas and as much information and insight as we can… Sending you much love, Connor, Sue and Steve. Hang in there and stay with it. Stay strong. And write or call anytime if you need to talk or vent…
Humbly, I would like to offer, try combining the suggestion of letting him rage when he wants to (and validate his feelings by expressing your outrage as well, as honesty is the best policy, and if you hold back, he knows it and thinks he has to, too) and music. I know Cherim lets go of her stress by singing and dancing and playing instruments (well, depending on whether or not you consider the recorder an instrument :) ). I know Connor might be too weak to get up and dance and that this sort of thing might not be his cup of tea, but maybe give him some drumsticks or a paint brush and just let him move (or not) to the music. The music can be anything from soothing meditation music to heavy metal, and should be a range (as he would have a range of emotions) and be based solely on music Connor likes. And, some specific suggestions are 1) the sky.fm app (via iphone/ipad) and one called calm radio, which both combined would give Connor a very wide range of musical genres to choose from, 2) getting Reiki healing music (Reiki is either Japanese or Indian in origin, I think), 3) Alpha Relaxation Music (from the relaxation company) which can be picked up at any Whole Foods store. It offers a well-researched, alpha brainwave inducing background music system with specific goals in mind like ‘enhance your health,’ ‘release stress,’ etc…, which might be better than just ANY old tune, as all of the music I suggest here is supposed to be healing conducive.
I also love what e lee said, and if i may take it one step further, do you think you or Connor would be willing to / or Connor might benefit by you taking him through imagining (remembering) when he was that angel, that soul, who is indeed strong enough to handle this, who might have even chosen this life, this body, given all the choices, because he, himself, (and thus God, as God always purports what we truly deeply want on the soul level) wanted to learn these specific lessons. The only catch is once your soul chooses, you forget upon entering this world, and the idea is for you to discover the lessons again. You can take him through the imagery, sort of like hypnosis, and maybe you can help him tap into that strong part of himself that is there, the place above the pain, and to the peace or wisdom that supercedes the physical. I know, not easy, nor for amateurs, so maybe, if you like the idea, you can consult a child therapist or even a hypnotist who can help in this regard.
Also, maybe you can create a wall posting up pictures/drawings of all the things he’s going to do once he gets through this, like a sort of wish wall, for both inspiration and as a project to take his mind off the angry, negative track and place it on a more hopeful, positive one.
Again, I humbly offer these suggestions as I know you must be trying everything good and you are already very knowledgeable.
Love you.
(PS: check your email when you can)
I am praying that God gives you His peace and His wisdom and that he gives Connor His strength and His comfort.
Although I cannot begin to understand all you are going through, I was humbled several years ago by the reminder that the all powerful God of the universe chose to "stand by" as others humiliated his son, nailing him to a cross allowing him to die. Although God could have stopped it at any moment or justifiably destroyed those who chose to persecute His only son, or simply allowed all of us to suffer the consequences of our sin apart from Him, God stood by not just allowing His son to die but creating a path for forgiveness for us who did not deserve it in any way. This must have been incredibly hard for God - even to the point of Jesus feeling completely abandoned by his father. I still don't think any of us are "worth" it, but God simply loves us enough to do this for us.
I don't know why God is allowing Connor and your family to suffer but I take great comfort knowing that he has not forgotten you, and He loves you, me and all of us. And He alone knows the reasons for His plans to give us hope and a future (Jer 29:11).
May God strengthen you and hold you all.
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