I’m feeling peaceful tonight. Today was a very good day in terms of victories for Ronan. It started this morning with his little words: “Mom, I have to poop.” Praise the freaking Lord. It’s been five days of him not pooping, and we have been giving him Miralax around the clock. I full-on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain.
This morning our sweet “A” from the clinic came by. She sat with us for a while. Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt, which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it because he was sleeping. My sweet friends Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too: my mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food.
I’m feeling a little braver about seeing people, so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.
We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg, anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us, and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.
I got out for a bit tonight. I was nervous about it, but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit, even though she is bombarded with auditions. YAY FOR THAT — both her coming and the auditions coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me. I called my other dear friend Susie, who lives in Colorado. All I had to do was say the words, and she is now coming in for a quick visit this weekend as well.
I don’t know how much time we have left with Ronan. It could be days, weeks, months… praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out tonight, breathing in the fresh air as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.
I came back to The Ryan House and Ronan had just finished his platelet transfusion. Luke and Quinn were in the room with him, and we all sat together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I almost started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.
I’m tired tonight and, as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kick my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I might be able to sleep without it.
Somebody posted this comment on my blog tonight. I loved it and wanted to share. Thank you, friend whom I do not know.
I read your latest blog, “The Next Person That Tells Me…” I just want to say I’m sorry for those of us who are inconsiderate with our words and try to say things to make ourselves feel better before we think about how they may affect you. I share your blogs on my Facebook and ask my friends to pray for you. I wear a bracelet daily so that when I see it, I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking. I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.
Before You Speak
by Connie Phelan Iddings
“Everything happens for a reason. You were given this because you were strong enough to handle it. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her, and you have other grandchildren — at least you can be grateful for that. You’ll be a better, stronger person because of all of this.”
These are comments given to a mother whose child is battling for his life and to other mothers and grandmothers who have lost their babies.
Think about it. Seriously. Stop and think about it. To a mom and to a grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.
I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children — that our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because He had a better plan? God is not cruel. His plan is to bless and not to harm us (Jeremiah 29:11). I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young, author of The Shack, puts it:
“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”
Never tell a parent their child is better off or tell a mother that her child wanted to leave her, even to go to Heaven. It’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive — and for wanting to hold onto her child as long as absolutely possible — is unforgivable.
Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments or decades, it matters not. Our baby is now gone. We are grateful for all the yesterdays, but we still want the tomorrows. We want our children with us today, right now, and would give absolutely anything to have them.
Don’t get us wrong. We love and are grateful for all our children and grandchildren who are still with us, and for those we will be blessed with in the future, but that does not diminish our love or desire for those lost.
Please never, ever tell a grieving parent or grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our minds like, “What if I were a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.
Before you speak, pause. Hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty because you feel uncomfortable. Please don’t tell us that you think it is time we move on. Leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are supposed to — a fact you may want to forget — but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their deaths if we think it will help someone. It is important for everyone that we do.
We know it is difficult. Believe me, we know. We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I myself most likely said these very statements in an attempt to comfort others in their grief and offer answers to questions we all have, for which there are simply no answers — at least for now.
I close with a statement from a grieving mother: “I love you all as always, as long as you don’t say any of those idiotic things… to me. Even if you think them, please don’t say them. They don’t give me strength at all.”
Strength is what we need, and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.
God bless. My prayers are with you continually.
G’nite to you all. Ronan and I love you to the moon and back.
xoxo
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