The steroids have helped to get rid of Noah's rash, but they have in no way helped his personality or already short fuse. He has been re-named the little Hulk. He finished his last dose today and he has pretty much gone back to being just a strong-willed child. (A strong-willed child on steroids is a tough match I would think for even the most seasoned of disciplinarians!) He spent the weekend visiting with his Grammy, aunts, uncles, cousins, and friends, and Mimi came down for a visit Saturday night. Many of us have loved him through his irritated comments and angry tirades last weekend. :) This boy will tell you to "Stop talking to me!" one minute and run to give you a kiss and tell you he loves you the next. He has always fought with everything he has and loved with even more. I know, as his mother, you expect me to believe he is wonderful. But beyond my relationship to him and my deep love for him, there is something so special that I would hope others could recognize...a God-given sweet spirit that loves Jesus already, that has compassion for others. There is slight glimmer in his eyes that tells me, "I'm going to do great things." I've written this story a while back (humble me if you've already read this), but when Noah was born I began praying a specific prayer over him most nights as he slept: "God grow this child to be a mighty man of Yours, a man who will follow you at no cost, who leads many to Your Kingdom, who will be a righteous man in an unrighteous generation. This is Your child that You have loaned to me and John, and He will be used for Your glory." I believe that to this day God is answering my prayer and unraveling His plan for Noah's life. This young man has an army of evil against him, but we will not cease praying for His power and goodness to overcome the evil of this world. Right now that evil is in the form of cancer. Tomorrow it could take another form. We don't know what tomorrow will bring forth, but we do know that we stand on Jesus the solid Rock, with a Holy Spirit that intercedes for us with groanings that we cannot understand, but that the Father does. When you are out of words to pray for my son - which I find myself in this position often, because I am asking constantly for healing - ask the Holy Spirit to pray for you. Please don't give up storming the heavens with prayers for Noah.
There are some of you who are reading that believe the medical reality that Noah cannot survive because there are no medical means that can save him. There are some of you who are reading that believe that God will heal Noah if enough people have faith as small as a mustard seed to move this mountain that is brain cancer. I must fall somewhere in the middle at the moment...I believe with everything that I am that God is all powerful, all knowing, and has the ability to just think the thought that Noah will have earthly healing and it will be. No matter how I am tempted to doubt with my mind, my heart has always been full of faith in God’s ability and power. My fear for the past two years has been: if God chooses not to intervene, will I still have faith in His plan and His will for our lives. Now that I am so very close to dealing with this situation, I can honestly say that I am filled with a peace that passes all understanding, and that my heart and mind are definitely guarded from any attack by anything unholy or untruthful (I understand that this will be a daily battle). There are so many theologies and opinions out there, and many are being tossed our way. What we find truth in, we store up in our heart; what we discern as hurtful/ignorant, we disregard as good intention. Right now, I know that my desire for Noah to be healed on earth is a purely selfish motive - I need him here. My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening.
Noah has been through so much in his short lifetime. He has always looked like a normal healthy boy (with exception his bald period and monstrous scar), and I have often wondered if people understand how much children with cancer have to endure. In his experience alone: Brain surgeries, drains, steroids, PICU isolation without parents, loss of peripheral vision, port accesses, hours/days of chemotherapy drugs through IV, days upon days of chemotherapy side affects (vomiting, diarrhea, lack of appetite, metal taste in his mouth, no immune system, isolation because of potential for infection, toxic urine requiring anyone changing diapers to wear gloves, sores in his mouth, blood and platelet infusions, drug reactions, hair loss, potential for hearing/vision loss, potential to develop other types of cancer as a result of the drugs, weakness/fatigue, daily GMCSF shots in an attempt to boost white cell count), radiation (daily sedation, hair loss, loss of executive function, potential for long term IQ loss), very long and tiring clinic visits, very long (even extensive) hospital admissions during neutropenic states, lots of time spent in a car seat driving back and forth to the hospital, loss of a normal childhood…..this isn’t even all of it. There are things we have all experienced that have been blocked from my memory. I read other blogs from cancer parents and think, oh yeah, we did that…that was horrible. And there are children we see every time we visit Children’s that have been through and are still going through SO MUCH MORE. Children who have lost mobility due to surgeries or treatments; we are blessed that Noah can run. Children who aren’t able to speak or have major speech delay; we are blessed that Noah rarely stops talking. Children who have not had nearly the quality of life that Noah has….for these things we are blessed. For the past 2 years WE’VE BEEN BLESSED, and so very thankful to God for Noah's abilities. If the day comes that we have to say goodbye to this dear sweet and precious child of God, we will not ask God, “why did you not give us a miracle?” because the past 2 years have been nothing else but a miracle. Yes, he has suffered a great deal. He holds up well, and you would never know what he has been through at first glance. But he has fought very hard, and very well with very little complaint. And for him to be completely healed and whole, though not with me and John, will hurt us more than words can describe and at the same time give us peace beyond understanding. It is a very hard thing to watch your child suffer so, and have no control over his pain and sickness.
I had not planned to bring up this subject, but please know that I want you to continue praying for Noah’s earthly healing, as I said earlier, pleading with God to grant Noah a long and healthy life on this earth, doing His will here and helping to grow God’s Kingdom. But know that sometimes God says no to our prayers, and that does not make Him mean, as Noah often says of me when I tell him no, and that does not make God unloving, because just as you want to give good gifts to your children and make them happy, you cannot say “yes” to every request they have of you, because you can see farther ahead then they can. We as children of God cannot understand his ways because we can’t see ahead, and we wouldn’t understand even if gave us His reasons. Have you ever tried to reason with your child? :)
I love this little boy in a way that I love no one else; it will never die, it will never fade, but only grow. And Jesus loves Noah immeasurably more. In that, I find my comfort.
Noah has at several times come to John and myself (unprompted/unprovoked) to say, “I’m going to live with Jesus.” We smile and say, “one day we all will (when we love and follow Him) Noah, but right now we’d like you to stay with us here.”
These days have difficult moments, but overall they are sweet and wonderful, and we are trying to make the most of each minute, and make memories along the way. Memories that “will last us the rest of our lives.”
Thank you for sharing in this difficult, winding road we have been traveling and please know we love you all for all you have done for us. I hope you can take away something positive and encouraging from this post; I just wrote what was on my heart and I am trusting God it needed to be written. The song I posted below has reminded me to rest and trust in Him.
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.