By Friday night, Travis and I knew we had to take matters into our own hands and decide for ourselves what course of action we are going to take with Ryan. Sometimes a parent’s instinct really is the best course of action. We simply get caught up with questioning and second guessing ourselves. After the hellish days Thursday and Friday were, we came to the conclusion we are going to do what we think is best, regardless of what the doctors say. So with that, we decided to only do once a day flushes. It’s the schedule he will be on for the rest of his life, so why not start it now? The doctor sent us home from the hospital with instructions to do the flushes twice a day until we see him in the office in a few weeks. After agonizing over Ryan’s pain, we decided to cut back. He simply never got a break. Saturday we didn’t do any flushes at all to give him relief and time to really rest because he has been in such constant pain the past two days and we knew his body needed a break. All day he was more alert, smiled, less stressed and a little bit more himself. Ryan still will not walk, certainly from the pain of surgery, and he refuses all food but in time, I’m sure those things will come back. We have decided to do his flushes in the morning every day because he is always home then. And the evenings are tough because of the kids’ activities. We plan to take him to as many games as we can this fall. This morning I started on our new routine and he did great. He didn’t have the cramping and pain he has shown with the previous flushes and he did stool within an hour. We gave him a bath and moved him to the couch where he is sound asleep. I know there will be more rough days as his body adjusts to these flushes, but in all, I feel confident about the decision we made to go with our gut.
Of course it concerns me that he refuses to walk and won’t eat, but it will come with time. He loves his Doritos and chicken nuggets too much to never eat them again. The weakness of the body is here, but certainly his strength will increase in the coming days. We simply need to give him time. Then again, he stopped drinking after his last brain surgery in 2012 and to this day refuses to drink any liquid. So who knows….it’s one day at a time.
A dear friend who has already sent one of her sons on to Heaven gave me the most profound words this week. Such wisdom from a mom who has been there and knows the pain of my heart. Her words struck me deeply. I needed this. I truly needed these words. I think all of us need these words because each of us has own our cross to bear ~
I remember screaming out loud in my house, car, in the shower, and on my knees to God…WHY?? WHY MORE TO HIM AND NOT SPARE HIM? The “Why” list right? It seems like every time you go through this you think it will be better if that is even possible, and yet, you are so right in that it just takes the literal breath out of us to see our kids in so much pain, to go through so much agony, to bear more than we have. I remember when Matthew was little, actually it was his first, very first surgery of a total of 26 surgeries…I remember sitting in the recovery room and all these people were in there so I couldn’t scream out loud so I was screaming really, really loud at God in my head….”Don’t you know how much I love him? Don’t you know I would die for him? ” It was in that moment I would understand something so precious, the true love of salvation and the cross, and really how much God understood me and what was happening. I was enveloped with a presence, that all I can describe is a presence that enveloped me and inside was a voice in my head that said “My sweet girl, I do know what you feel and the pain you feel and the anger you feel, because that is exactly what I was feeling when they were beating my Son and when they were cursing my Son and when they crucified my Son”…I broke and cried. All of that to say is this….I still cried and screamed at God and grieved when my son had to go through more but I realized that God knew just exactly what I felt, so it helped me trust Him even more….it made the trust so real, so real that God walked this same road with His Son, just like those of us with kids walk the road together, helping and lifting each other up in prayer and anything else you might need…..in Psalm 139 God says He KNOWS each of us before we are even conceived and He is so intimately involved in each of our creation, I sometimes wonder, do you think He had conversations with our boys prior to us even knowing them and talking this all through with them. Maybe they didn’t know all the details, but, do you think they were willing to do this hard road so others would see Christ through our families? So others are brought to Christ because of their smiles, their joy, their love, true unconditional love that is such a mirror of what the Father truly intended? All I know for sure, is you are much loved and so is your family, not only by those of us here, but, by Him who created each of you to be those lights…..
Such words of wisdom could only come from someone who has walked the road, who has been in the depths of despair and the pain of suffering but who also knows the joy of parenting one who is fragile, who in that frailty is changing the world as only he could, as only God could empower him to do. I love this verse she gave me, one I have not read before ~ Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me a renewed hope and cheer. Ps. 94:19 This is one I have memorized and will carry close to my heart because there are many times I will need to repeat it over and over and over again. There is nothing as powerful as the Word of God.
Another faithful friend, a godly woman whom I highly respect, said this ~
Kim I want you to read Gods word over your son Ryan, rather he is sleeping and awake in bed. Jesus is there and He does know what Ryan is going through as he was beaten so badly before He went to the cross and suffered so on it as He bore it all for us down here. God has angels around your beloved son. Matt 18:10 says so…..See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.
The Lord speaks to us in many ways, and this week he has clearly spoken to me through the words to friends. How could I possibly forget Jesus’ death on the cross? Of course God knows my grief! Of course He understands my longing to trade places with Ryan and take away his pain! Of course He hears my pleas to stop the progression of this unknown disease! He had those same thoughts and emotions as he sent Jesus to the cross. Sometimes I find how easily I can forget that even when I feel alone, when no one else gets my heart, my Heavenly Father most certainly does indeed know me and is so very close. I am never alone. Ryan is never alone. I did as my friend said and stood over Ryan as he slept last night and prayed God’s word over him. I pray for my kids all the time, but last night I prayed with a boldness I haven’t felt in a long time.
As I’ve said before and will continue to say, thank you. Thank you for walking along side us, for lifting us in prayer, for your words of kindness and concern, for the prayers. Thank you for the meals and gift card which have been such a blessing as Ryan has required so much care these past few days. God is good and His provision is amazing. I look forward to the day when we can pay it forward and bless others as we have been blessed. It’s amazing what something as simple as a meal can do to ease our hearts and lift some of the daily stressors. God bless you all. You are loved!