Deep breaths, Patience and Xanax


Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend ❤

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo

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4 thoughts on “Deep breaths, Patience and Xanax

  1. brandi

    the new layout is jacking me up! Sorry to hear you didn’t get any results today, hang it there girl and keep your positive attitude.

    I hope you all get a little sleep, but can only imagine how hard that will be with your mind racing with possibilities. Easier said than done, but it is not in your hands but in the hands of God. We have to trust Him, and pray for His healing of your precious baby Ronan.

    I believe God does have a plan for Ronan and his family, just think of how many people who have come into your lives because of your stuggles. Big plans baby, big plans..

    I for one am hoping for a miricle tomorrow when the doctor’s reveal their knowledge.

    Hang in their sister, you CAN do this!

    p.s. so glad to hear you had some special time with your hubby. Children know when their parents are happy, and I truly believe this is one of the most precious gifts you can give them. A united front is something that is admired.

    And a big F-you to Cancer!

    I pray:
    Dear Heavenly Father, you know just what this precious boy needs, you know the enemy that is attacking his body and you and you alone can heal him. I know that there is a purpose for Ronan’s illness that you will reveil it in your time. But until then I pray for a Miracle that only You can provide.

    and father, please provide strenght and comfort for this family during their trials, let them feel your presence and surround them with loving friends, family and stranger-friends to support them and ease their burden.
    Help the communication, feelings and understanding between these parents be sensitive to each others feelings as they might have completly different concerns that the other doesn’t understand.

    Please bless this family and their precious son with a miricle that only you and you alone can provide.

    Brandi

  2. Maribel

    Maya my thoughts and prayers are with your family. I have been keeping track of your posts also hoping for good news. My son is also three years old and when I think of Ronan I think of my son. I pray to God that the outcome is the best possible. You are a strong woman and teach us that all other things in life are truly insignificant when it comes to situations like these. I will continue to pray and hope that one day we all hear the great news we’ve been praying for. Keep strong and hugs and kisses to your family.

  3. J

    What a beautiful prayer by Brandi. Very Touching, brought tears to my eyes. Love all the posts, the first thing I do when I get home is to catch up on Maya and RR. If you read this anytime soon, I have a surprise gift for Ronan Building B at the Check in Desk. For some reason they are unable to pass it on. It was to be anonymous but hopefully you can pick it up.

  4. Michelle Bunger

    Thinking of you tonight and praying like hell for Ronan’s speedy recovery. Many blessings to you today and always!!!!

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