What else do you have for us, world???

I’ve done so well these past few days. Enjoying Ronan feeling better, enjoying Quinn, enjoying Woody, just living life being so thankful for what we have in the here and now…. trying not to worry about the future or what tomorrow may hold. Living in the present, in the moment, and nowhere else. It’s days like today that I am overcome with sadness. It’s days like today where the tears won’t stop. Some days, it’s too much for me to watch Ronan hurt. His screams and tears become unbearable. His suffering rips my heart out to the core. Yesterday, while our nurse, Julia, was flushing one of Ronan’s Broviac lines, it broke. Which means it has become too weak from too much wear and tear, which is not uncommon. She quickly clamped it off and called in another nurse to call the “Green Team,” which is the code name for Dr. La Quaglia and his helpers. He came to see us and decided that Ronan needed a new access system put in. They decided to put in a temporary line for now and in a few weeks Ro will either get another Broviac or a Mediport. Regardless, Ronan had to be put under anesthesia today and Dr. La Quaglia took out the Broviac on the right side of his chest and put in a new, temporary line in the left side of his chest. Ronan woke up pissed…. more so than normal. We went back to our room and soon an escort came to take us downstairs to floor 2 for an x-ray to make sure his line was properly placed. I could not get Ronan calmed down. The new temporary line was all bloody and he kept trying to rip it out. He screamed and cried for a good hour while I held him and let him hit me and listened to him tell me he hates me. He was screaming that his new port hurt and he wanted it out. There was nothing I could do but sit, hold him, and try my best to calm him down. I had Woody call a doctor and nurse down to come and  look at his new line, as the blood was worrying me. Soon they took us back for his X-ray and I sat him on the table while he was still screaming and saying it burned. The technician let me stay in the room and somehow I actually managed to get him to hold still for the picture. I was bawling the entire time. After his x-rays, a doctor and a couple of nurses came in to make sure there was nothing out of the ordinary going on. The blood had stopped and they changed the dressing and cleaned him up. I asked the doctor all the usual questions…. if this was normal, why is there so much blood, why is he is so much pain, etc. They explained everything to me and ended up making me feel better. By this time, Ronan was exhausted and as they wheeled us back up to the 9th floor, he had finally calmed down and he gave in and let his little limp body rest on me. I held him tight, rubbed his back as we were wheeled into an elevator full of people. An elevator full of people whose eyes were on us the entire time as I sat and let the tears pour down my cheeks because I don’t care and I cannot stop them today. Today, has not been a good day. Watching Ronan and all he is having to go through becomes unbearable at times…. no matter how strong I am trying to be. We are not getting out of here anytime soon. Woody thinks maybe Monday. This chemo has done a number on his ANC counts and has wiped him out. I’m sad for Quinn who only wants to be with Ronan and vise versa. The main reason for keeping Quinn here was to spend time with Ro and that has hardly happened. He asks me 10 times a day when Ronan can be released from the hospital. I am going to be heartbroken if it is not until Monday and Quinn has to go back to Phoenix without spending much time with Ro. So not fair.

Ronan is sleeping now and they have him hooked up to a morphine drip to help with the pain of his new line. I hope he wakes up not so upset about the new foreign object in his body. He has every right to be upset, mad, scared, confused. None of this makes any sense to him and I don’t blame him for being angry at the world. I am trying my hardest to be so very strong for him and to explain all of this to him in a way that makes a little sense to his young mind. It is all I can do today to not crawl up in a corner somewhere as I feel so tired and sad. I miss my support system back at home so much. They give me so much strength and love and not being surrounded by our dear friends and family has been harder than I expected.

Alright my sweethearts. This is all the update I can muster up the energy for today. Lots of love to you always. Thanks for checking on us and also a big thank you for all the people who have responded to donating blood and platelets. Means the WORLD to me. THANK YOU THANK YOU THANK YOU. I love you all so very much.


8 responses to “What else do you have for us, world???”

  1. Maya just a note to say I dont miss any of these and just wanted to let you know that I think you are a very strong woman and a very superior mama!That baby is so lucky to have you as you wrote before some of the children dont have their mama like Baby Ro does!Just thought you needed to hear that we all think you are a Wonderful mommy and your doing a great job!!!Nobody could do a better job than your doing right now!You should be very proud of you!!Stay the course and you will win!!I have faith in God and he will let it happen,you just have to Believe…..

  2. My heart aches for you and Ronan. It’s not fair that his little body has to go through all this pain. And for you…as a mother myself… I know you’d take that pain 100x’s over if it meant Ronan will be feeling better. Prayers sent over! and although you want to be strong… sometimes you just need to let it all out.. scream and cry… so you can take a breath of fresh air and feel better yourself. xx

  3. Lord this is heartbreaking…come quickly and bring Your strength and healing..come suddenly and bless this family hugely…to Your glory Father..comfort them..show Your mercy and love in a way You never have..bring Your Holy Spirit to bring a breath of fresh air…in Jesus name amen.

  4. I’m so sorry for the terrible day. My heart breaks for you all. Just wanted to let you know that you aren’t crying alone. I cry almost everytime I read your blog. Sometimes out of sadness for your suffering and how frickin unfair it all is, and sometimes out of pure joy on the better days. I hope that you have a lot more of the joyful tears coming your way. Sending lots of love and prayers to all of you.

  5. Maya, my heart goes out to you, Ronan and your family. Even though it was 13 years ago for us, hearing about these things happening quickly puts me back in the past. I know exactly what you are going through, and know that you will all get through this and Ronan will be playing with his brothers again very soon.

    I pray for strength for all of you.

  6. Even in your moments of weakness you are still stronger than most of us could ever be. You and Ronan are both Rockstars!

  7. You amaze me. I wish I could send you some strength somehow. So so sorry. Poor little RO. All I can do is try to keep spreading the word. Trying to get people to be aware and donate money, platelets or just time to become aware
    Praying you both have a break with a better day. You’re doing the best any momma could do.

  8. hugz, hugz and more hugz to you, the family and sweet little Ro…Blessings of peace and comfort sent your way

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