Yesterday is a blur. I remember doing things — everything — but not necessarily in the order they occurred. I just threw myself into the day, leaned into it, and woke up this morning feeling like it happened eons ago. Weird. Surreal might be the word that best describes it. I only thought about it for a moment, as I was coming out of the haze of sleep, then sat up telling myself out loud “welcome to the real world”. Not very welcoming and hasn’t been for some time, I thought. I closed my eyes and firmly planted my feet on the floor, allowing the determination well-up in me. Yes, it’s worth it to plow through another day.
Ryan tolerated yesterday extremely well and did, in fact, rest well last night. Without missing a beat, he began his day right on time and with the gas pedal pegged to the floor. As for fully knowing how yesterday went, well, that’s going to have to wait for a few weeks. This is how long it takes to compile the raw data.
I was definitely encouraged by the fact that Ryan no longer needs two medications. One of which is an injection he receives every other day. We also had a lengthy discussion about a form of treatment that was introduced to me by a reader just last week. It involves injecting Ryan’s own immune cells with the hope of cellular repair. There is certainly a real risk if we go down this path, not least of which is cellular damage in the form of cancer.
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It’s another excruciating judgement call. I hate this situation we are in through no fault of our own. I HATE IT! How many times have I sincerely wondered if I’m in hell? What did I possibly do so wrong in a past life that could call for this? Did I inflict traumatic damage to someone like that to Ryan? Whatever I must have done, it had to be evil. This I’m sure. Moreover, what did Ryan do?
How many more life-and-death decisions are needed for our son? Really! I suppose it will never end because it appears hell is eternal.
We thank God you got through such a tough day yesterday. It’s also good that Ryan was exhausted and rested well which allowed you some deep sleep, even though it may not have been as long as you needed. Remember you got through this day and there are a couple of key milestones to celebrate; eliminating two meds. That’s really great! Wishing you and Ryan a stretch of nice weather to take advantage of that great patio and fresh air. Always praying for you guys. God bless you.
Ken, I know you are glad that yesterday is over! Whew! I could hear your sigh of relief all the way over here — 60+ miles. 🙂 I can’t help feeling that Ryan did well on all procedures/tests.
We have no past life except for the one we call “the past” that we are living today. That said, let me say that I do believe that “what goes around comes around,” called Karma by some. I witness this happening all around me, but, Ken, you aren’t the kind of person who would ever cause the kind of grief that has been dealt to you and your family, so I don’t think you have to worry about Karma.
Ken, God doesn’t punish us for our sins (lucky for us!). He is a loving, forgiving God, and His holy spirit is with us always. If we believe there is a hell for those who deny God, then we must believe in a heaven for those of us who know and accept that God Is. I think that we should pray that confirmed athiests like Larry King, George Carlin, and Bill Maher, who is at a 6.9 out of 7 that he doesn’t believe in God, get a second chance from our loving God. You faith has faltered because of what happened, but God understands this and He is with you anyway. Most of us here have been through seemingly impossible times, too. He (and we) will help you re-build your faith, but only if you allow it. Stick with us, Buddy! Concentrate on how far Ryan has come — it gives us much hope for his future! As far as the cellular repair question, you will know if/when this is a possibility. If anyone has more information regarding this, I am sure they will let you know. Many of us will be researching this as well, I am sure.
Love and prayers always, still here, not ever going away.
One foot in front of the other Ken…. That unconditional love for our children will get us through anything and I was just talking about your situation to another co-worker this morning. She stated that a close friend of hers is dealing with a situation with her own daughter who was recently in a bicycle accident while riding with her children and is now paralyzed.. The mother of this daughter has stopped everything in order to care for her but what she also told me was that this mother had sadly just a year ago lost one of her other daughters to cancer. When I asked how this mother was handling things my co-worker said that she is positive and determined to handle it, just like you. I asked how and her reply was “through faith”…. I know you’re tired, frustrated and just plain pissed and we know you need to vent which you have every right to do and we will always be here to build you up and keep you moving forward… Love you all…..
I read some good news today! Ryan had a good night sleep! Whatever you are doing, you good looking “devil” of a guy, Ken, it’s good to read that Ryan is having a good night. That also means you have a halfway decent physical rest and can plow through the next day. Here is hoping for some warm sunshine so you can nap on the patio today if even for a cat nap. Always thinking of you guys.
Hello Ken,
It might feel hellish, but sometimes God picks remarkable people (like you) to do remarkable things (you helping your amazing son heal). I only know one or two other souls like you and they help me to see beyond harsh realities to new possibilities.
Having said that, I am frustrated that such enormous decisions are regularly placed upon your shoulders. I’ve always felt that extensively trained medical experts should be able to make these kind of medically critical calls, i.e. at least say what they would do if this was their child. Fortunatley you have a very high aptitude in knowing what would be the best path to take. Myself, I probably would wait before doing anything that could potentially cause serious harm. But, I do not have your knowledge, experience, or depth of understanding about this. I resent that you must shoulder this alone!!
You are an extraordinary Dad, who is living a life that’s anything but ordinary, overcoming obstacles that would have made most people give up a long time ago. You have had to become not just a Dad but a hero Dad. You were born with the necessary abilities and strengths to transcend boundaries and overcome obstacles that most could not. Why you and your beautiful family have had to suffer so terribly, I do not know. I do know that you are an unusually intelligent, physically powerful, deep thinking, totally devoted Dad who would stop at nothing to help his family.
Other Dads can revel and take pride in their children’s accomplishments — very few can say they sacrificed and gave every part of their mind, body and soul so that their child could live.
I wish you a smooth, hopeful, good day, remarkable man 🙂
Love, hope, hugs, always believing
Paula
Ken,I’m glad Ryan got through all tests and can come off a couple of meds.
My thoughts and prayers go out to you, Ken and Sue for the “hell”you are going through..May it end soon and may Ryan get better.That’s what we ALL pray for
Love Gail
It is hard to give advice. All you can do is live life one day at a time thanking God for all that is around you. My prayers are always with you.
Many times life has no answers. But we do what we have to do regardless of the cards that are dealt to us. Oddly, Ryan teaches us how to cope and live in the moment.
Thank you for this very honest and heart wrenching post. I am praying that you will be encouraged by the Lord in some big way today. Your perserverance is so inspiring, and God did not promise any of us sunshine every day.
However, God did promise us days of relief and I hope and pray that God will bless you, Ryan and your entire family and cadre of supporters and caregivers – before the end of this very post – something more to give Him the praise for.
Do not be cautious in your thanksgiving, for God will never leave you nor forsake you. God bless you and you will continuously have my prayers along with the collective group of supporters and prayer warriors.
Yes, the good news is that this is the closest you have to get to hell and it won’t last forever. I look forward to our true eternal life every day! We continue to pray for your strength, perseverance and healing in the meantime <3
No, Dear Heart, you’re not in hell — All Good Dads Go To Heaven!
Thinking of you today! So sorry for your pain and I pray for relief. Tyler and I would like to come out for a visit if possible. Please let me know of a date and a time that is best for your family and we will come out.
Joan