Snug as a bug in a rug

Tonight I laid with Ronan in his bed until he fell asleep. He didn’t nap today so he fell asleep easily. He looks so peaceful and content. We whispered about a lot of things but I mostly told him how much I love him and how much I’ve missed him. We talked about how he is going to get all better. He told me he was already all better. I cried a little as I watched him fall asleep. Thinking about what is going on in his body is hard for me. His right eye looks a little sunken in. The physical changes are happening but he manages to look so stunningly beautiful. I cry for him thinking about all he is about to go through and how hard he is going to have to fight to get through this. No child should have to endure this pain; but as his mother I think especially not him. Why was he chosen for this? Why this angel of a little boy? I know the answers are not clear now, but I pray that someday there will be a reason. A reason that is much bigger than this, then us. I keep telling myself it was meant to be him because of how strong he is. If anyone can survive this, it’s him. He has to be the poster child for hope, miracles, and love. He will be the poster child for this horrific disease. And we will fight for the rest of our lives for a cure so no other family has to endure this type of pain again.

I couldn’t be happier tonight. Having my family all under the same roof is such a blessing. If I had only realized how simple life was before….. I would have looked at things in such a different way.
I now have the recipe for complete and utter happiness. I’ve had it all along… It just took going through something like this, to realize it.

rockstarronan

September 2, 2010

Childhood Cancer, Mama’s Thoughts, Neuroblastoma, Ronan’s Progress

AZ, Cancer, Childhood Disease, Family, Neuroblastoma, Parenting, Phoenix

10 responses to “Snug as a bug in a rug”

Danielle

September 2, 2010 at 7:53 pm

So glad you found your favorite recipe!! Your blog headings are perfectly clever!!

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susan

September 2, 2010 at 8:31 pm

Your blogs are the most thought-provoking blogs i have ever read and i just wanted you to know that you are touching and changing the lives of everyone reading them. You are such an amazing mom (and woman!) and Ronan is so lucky to have you – and vice versa. You are all in my prayers on a DAILY basis – and i’m so glad you’re all under one roof!!!

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Mary Haines

September 2, 2010 at 8:58 pm

sweet Maya you have always been blessed. your family is blessed. Why Ronan??? who knows but you have the faith to forge ahead and say “why not Ronan?!” And fight and be like Alex and be an inspiration to other families. I so vividly remember Joanie and her struggle with a second baby, born breech, no less, a few days after Alex’s diagnosis. She always had such faith, such positive optomisim and she worked full time through her ordeal to keep insurance current for her kids..my gosh…here she is with Alex 21 years old. I have spent time with this miracle boy….now and then…..he is an old, positive soul, who gets what is important in life. I watched him with his peers..his patience is a little short as it should be!!! the silliniess of our teens (who the law says are adults!) he knows and lives different. He is a greatful kid and how admirable? A kid who is giving back to his country?! Of all kids, he should be entitled, but he is so far from it!!! I look at Ronan and read your stories/entries and I see Alex, 17 years ago and Ronan 17 years fromn now, probably the same wise old soul, who has lived an adult life way before his time, but appreciates his life more than most, who, selflessly, has decided to fight for our country, maybe Ronan’s fight will be a different fight, but the will to fight and the gratitude will be there as will the support system of so many who will not forget this daily fight for his life!

Who knew that17 years later Joanie and I would re-connect through our kids at UA and that the Thompson family, my dear friends who so generously donated money and phone cards to Joanie all those years ago when she and Alex were in MN at the Mayo Clinic for his BMT, and the nurse, Joanie I called when Heidi was being air-lited to Good Sam in pre-term labor, would be the one, the mom, the nurse, the friend, to offer you the support and the vision of the future that you need to see right now. The Hanson-Bain’s are awesome, special people, focus on the future of Ronan…he will survive and will live to return the example that Alex gives you now. As will you and Woody, to be there someday, years down the road, to be the visual of the future of other parents walking this awful walk. you have been chosen, I know you don’t want to be the “chosen” family but what is your option now? Hold your heads high and keep on the big fight and win this awful battle!!!!! By the way, Jaonies second son, Jon is a football player in High school…she say’s that all she could do that first year is breast feed, someone else raised him, but not really, what was her choice? Same as yours…fight for your kid, no matter what. the twins will be fine as you see, God gave them each other first. Then Mimi and CPT, your mom and Scott and others. They are fine. Don’t beat yourself up. They are and will be fine. Yes they need and want their parents but are so resiliant that they will accept what you can give because it is all the same to them. This life is their new normal. When mom is there, they get to sleep with her!~ How cool is that?! They might get an extra cookie or two from grandparents who spoil them, they might get reprimanded for “germs” but they are and will be fine. Reassure them that they did nothing to cause this, it is what is, they are great, fun, active kids. They get to live their life too,. Maybe a little at Mimi and CPT, but so what? that is NORMAL for them so let it go. How many kids are lucky enough to have grandparents around all the time.? Yours are so they don’t know different. Let that go. I can hear you beating yourself up over time with the twins. There is a Divine reason that we don’t understand and my never. But the twins love their parents and grandparents. They are lucky kids as is Ronan to have you, Woody, Scott, grandparents in his life. Your focus, understandably,has to be with Ronan now. You are doing an awesome job! You are especially great at “venting” and getting your feelings out. I enjoy every minute of your journals and wish I was there to hug you. God gave you a little break this week and forced you to allow the other people who love Ronan to step up. Woody, I am sure enjoyed every minute he spent with Ro, as did Mimi Kay and Karen. You know he was well cared for and they would have called you in a second if you needed to be there. My words of wisdom, unsolicited, but offered with love, TRUST. your presence 24/7 doesn’t change anything, but the few hours off gave you the rest you need to continue the battle, gave you the time you needed with the twins, with Woody and your support system of your friends who love you and want to be there for you and Woody. Some of your friends want to do anything and everything to make this go away, they are gifting you with time, you aknowledge in your journals how this has helped you. Allow them to give you what you need, time to vent, to cry, to laugh, to pretend this isn’t happening, to share the successes of their kids and the happy moments of your other kids. You have seen that this is a gift. Dear Maya, you are receiving what God intended right now, wisdom and acceptance. Hold dear to that, continue the fight, know that we are all praying for the healing of Ronan and your family. you are loved, your family is loved and you are being heard with your journals. I read,I listen, I pray, I ache, I cry, I rejoice with all of you. Sister Mary

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Willits Family

September 2, 2010 at 9:03 pm

Maya

Truly, it has already been said but you are AMAZING. Your strength is like Wonder Woman. Yes, and I am sure even Wonder Woman cried and especially if her precious peanut was going through something this horrific. Maya tell Woody he should read your blogs, because they are so eloquent. I know I could not put pen to paper well in these days fingers to keys and write my emotions as beautiful as you are doing. Keep up the writing.

Thank goodness you are 100% better. Look at it this way it took 4 people to fill your shoes in your absence. Oh, to be a Mom:))

Take care of yourself and keep the strength and Power. I totally think the family should go trick or treating as Super Heros this year. Obviously, you as Wonder Woman, Woody as Super Man, Quinn as Batman or Robin and Liam as whatever Quinn does not do and Precious Ronan as Flash. Meaning he will be back to normal in a Flash……………… You all are my heros with your attitude and perspective. I will sleep well tonight knowing you all are snuggling. Sleep Tight.

xoxo

Gay and Crew

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Chris

September 2, 2010 at 9:16 pm

Just praying.

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Nance Harris

September 3, 2010 at 6:52 am

Dear Sweet Maya,

Gratitude is such a blessing, especially in today’s world. So many people just want the next thing and aren’t thankful for all they already have – you are now. Even the worst of circumstances can have silver lings, yours does.

Loving, caring, helpful friends and family are worth more than gold or silver which can disappear. God is showing you the true priorities of life. We learn lessons best from experience and you are growing from this. It’ll help when those boys are teenagers, take the word of someone who has three boys.

Keep the faith,
nance

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Lindsey Davison Masiarek

September 3, 2010 at 9:27 am

Maya, Thank you for sharing your story. You and your family are so strong and amazing. Ronan is truly a rockstar and will beat this cancer. Keep giving him all your healing love. My thoughts and prayers are with you.
Lindsey (Davison) Masiarek

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sheryl

September 3, 2010 at 11:27 am

Gawh Maya, I just love reading your blog! You are so inspirational and so real… Your heart is beautiful.

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Cecilia

September 3, 2010 at 3:02 pm

Yes, events like this truly separate the significant from the insignificant. I saw these inspiring words today and wanted to share with you: [ I believe in mind over matter. In the human spirit to prevail. In miracles and blessings; both great and small. In possibilities. That hurdles in life are meant to be jumped over, not something to stop us.]

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Julie (Thompson) Gorman

September 3, 2010 at 7:47 pm

My name is Julie and I went to HS with Woody @ Sunnyslope. I lived around the corner from the Thompsons and both our mothers were named Kay Thompson. At local businesses, we had to explain which Kay Thompson we were talking about. Just the other day I was doing something for my mom and they could not figure out which “Kay” I was talking about.

Anyways, I just wanted to thank you for keeping us informed about you little angel. I believe God has his hand in everything and he is with you every step of the way. My entire family is praying daily for Ronan and the rest of the family. I am a pediatric nurse and worked years ago at PCH in oncology and then in the field as a pediatric hospice nurse. I have the utmost respect for the doctors at PCH, especially Dr. Wood. You could not be in better hands. Even though at times it does not feel like it, God is giving you the strength to face this cancer and stay “strong” for your family. What a blessing to have the friends you talk about in your posts, so that you can talk, cry, and vent. You need to do that and get it out so you can be strong for Ronan. Please take one day, one minute at a time, one second at a time. I pray one day to meet you and Rockstar Ronan. God bless you.

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