Tag: Dr. Sarah Matheson

I love your Poppy sister to the moon and back.

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Ronan. Sometimes I just sit here at this computer screen, wondering what to write because the only words I can think of are… I just miss you so much. That’s it. I just miss you so much plays over and over in my head like a broken record that I will never turn off. Tonight, I guess I have a little story for you that is mostly about your sister. I’m not going to lie, Ronan. I was a little unsure of how things would be once she got her. All of my usual doubts filled my head. The thousands of questions. Will I be able to love her enough? Will she love me as much as Ronan did? Can I still be a good mom? Am I worthy of loving another child? What if we don’t connect, bond, etc… What if I am still so numb, that I feel nothing? Am I betraying Ronan? Would he be mad or sad or jealous? Am I hurting his feelings by having another baby and loving it? The things I worried about in my head seemed to be never-ending and oh so dramatic, but they were my real life thoughts about all of this.

Then that day came that your sister was placed in my arms. I can honestly tell you that I was so overcome with so many different feelings, that it was hard for me to feel a thing. So I just stared at her while she stared at me. The first thing I whispered in her ear was something like, “Ronan loves you.” Then my mommy mode adrenaline rush of I can do it all kicked in. So it was a constant stream of auto pilot everything. Feed baby. Change baby. Sleep baby. Tend to mama just pushed out a baby war wounds. Eat mama. Sleep mama. Drink mama. Shower mama. While taking care of other kids, laundry, people wanting to meet her, phone calls, emails, a few blog posts, foundation things, don’t forget to grieve mama, the questions of “how are you really doing from my friends and family seemed constant. But with all that adrenaline rushing, I was able to keep a safe distance away from really feeling that deep connection with your Poppy sister. Oh, I knew I loved her, but I had been keeping myself so busy as if to not let myself fall in over my head. My guard was still up I guess you could say. My mind was still trying to go to that place of don’t get too attached, in case something happens. So, I guess you could say at first, I was dating Poppy in a way. Testing her out to see how things were going to go.

I’ve spent the past few weeks, slowing everything down. I’ve spent the past few weeks, letting myself and my relationship with Poppy unfold a little more. We spend much of our days, sitting quietly. Her constant need to be fed has helped us to bond. We do everything together. I can’t even put her down in her crib to sleep, so she has been sleeping in our bed. For as slowly as I’ve watch things unfold, I can’t stand the thought of being separated from her. I talk to her a lot, even when she is sleeping. My favorite part of the day is when I lay her down to be changed and she just stares at the big picture we have of you in her room and while she is staring, she smiles at it from ear to ear. She’s been doing this from really early on, when babies aren’t supposed to smile at all. She started this at about 2 weeks when babies are supposed to be blind as a bat. I watch her and say things like, “Is Ronan telling you secrets again?” I scoop her back up, rock her and then sometimes look down at her and think to myself, “Are you really Ronan? Because if you are not, I had no idea I would be able to feel this way again. This close and this strongly connected to a new baby after losing my everything. Either you are Ronan or Ronan sent you because he could not take how sad I was anymore. He sent you to try to help fix my heart and soul. He could not have picked a more perfect baby girl to heal my heart.”

The past few days, I’ve felt nothing but this euphoric happiness. Happiness that has only come because of your sister. I see it through everybody, but it’s through myself that I can actually feel it. I am not dating Poppy anymore. We are full on in a crazy, love affair, forever will be married, marriage that I am over the moon about. I without a doubt know, none of us could have really survived this life and lived this life in the way we should be living it, if it were not for your sister being born. Everything has shifted in such a good way. The energy in our house has changed. I’m getting more of those beautiful moments in life that I often talk about from the simplest things. Beautiful moments seem to be everywhere I look, Ronan. I am no longer fighting them or scared of them. I feel so lucky and blessed and this is all due to this gift you have given us which is her.

Dr. Sholler has been in town and you know I am always crazy happy when she is here. Your daddy, Poppy and I picked her up from the airport on Sunday. Before she got in our car, she sent me a text. “Can we hike?!” I laughed out loud. I said to your daddy, “Giselle wants me to take her inferno hiking. She is such a badass.” I told her of course we could. Your daddy said to me, “Are you sure about that? Did you tell her how you almost killed your intern, inferno hiking?” I told him to hush, that she didn’t need to know that. I did warn Dr. Sholler that it was going to be hot, but she was totally game. I was feeding Poppy in the backseat of the car when she arrived. Your daddy parked and went to walk to get her. As soon as she got in the front seat, she scooped up your sister into her arms so she could hold and love on her. I was blown away. Watching the two of them meet was something that will stay in my mind forever. They sat and stared at each other for a long time and Dr. Sholler was such a natural with your sister in her arms. That’s what makes her so different from other doctors, Ronan. She doesn’t have that compassionate chip missing, for being such a bloody freaking genius that a lot of people do. She doesn’t have a fucking ego or agenda. She cares so much not only about her patients, but the family’s as well. Even the one’s with the dead kids. That is so beyond rare. She is such an anomaly in this world. She is my hero and I am so proud to be a part of the things she is doing and will be doing in the future for these kids fighting Neuroblastoma. I will forever be sorry that we didn’t find her sooner.

I took Dr. Sholler hiking. We talked a lot about cancer things, but other things as well. I asked her the million dollar question which was, “What do I need to do to make sure Poppy doesn’t have cancer?” I said, “Do I do nothing and just trust in the Universe that completely screwed me over? Do I start having her urine tested? Do I get her blood tested? Scanned? Please, just tell me.” We talked about how a urine test after 2 would be a non invasive way to just make sure everything is o.k., but ultimately Dr. Sholler wants me to just trust in you. She told me that your sister is fine and is going to be fine. I tried my best to listen and trust in that, but it’s really hard to do so when your entire world has been shattered. Fast forward to today to prove my point on that.

I fed Poppy this morning. I burped her after. I set her in her bouncy so I could pack Liam and Quinn’s lunches. I heard Poppy coughing a bit so I picked her up. Bright yellow vomit/spit up goes flying all over my shirt, not once, not twice, but three times. I go into show your daddy. I see Poppy looking a little pale. In my mind I’m freaking out and everything in me is screaming, “SHE HAS CANCER!” Your daddy makes light of it. I do not. I text our pediatrician. She texts me right back and says it’s probably curdled milk, but if I want she will check her out and feel her tummy. I of course, ask her to make me an appointment to bring her in. So, I sit and wait at home for our appointment. My mind goes to all of those awful places while the tears pour down my cheeks. This is my life now. This will always be my life now. I’ll never escape this world where a little thing is just a little thing. A little thing to me, will always mean cancer. I know I have to learn to let some things go, but today, this lesson was lost on me. Today, it was all I could do not to run down to the hospital demanding to have her scanned. Dr. Campbell calmed me down and told me everything it could be, none of it being cancer. She pushed down on her tummy and told me it was soft. She told me your sister is fine. Your sister is fine, Ronan but I will never be fine again. Not when it comes to normal things like yellow spit up, tummy aches, aching muscles, headaches… I will always think the worst. I thanked Dr. Campbell and she told me she would do tummy checks on Poppy everyday if I wanted her to. That she would come by our house even and to text her whenever I was feeling uneasy about something. I smiled and thanked her again. Once again, I am so lucky to have such an amazing doctor who truly cares, taking care of our family.

We are home. I am exhausted from not sleeping well last night. I guess I was also a bit wired from the amazing night I had with Dr. Sholler and some great peeps from T-Gen. I took Poppy with me. She goes everywhere with me and didn’t make a peep. Best baby ever. So many wonderful things are in the works and I am so honored to be able to be surrounded by such amazing people, who share the same dreams and visions as I do. Together, we are going to do extraordinary things.

I miss you. I love you. I hope you are safe.

xoxo

Music to my ears

I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 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 and 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 due to him sleeping. My sweet friend, 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 that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back 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. 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 has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was 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 about 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 kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. 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 Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of 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 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 on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. 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 Mother’s and Grandmother’s 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-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 matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. 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 that are still with us, as we’ll also be for those we’ll 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 mind like, “What if I was 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 to 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 that 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 suppose 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 death 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 for questions we all have, that there are simply no answers to-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