The Wait Begins

I took Monkey yesterday for his follow up labs. Two weeks. That is how long it will take to find out whether we are okay or have signed up for a whole new fight. Monkey has been fighting infection after infection since Christmas. Nothing severe, but they never go away either. We saw a new immunologist in February and after my pleads for more testing, she ran his antibody levels again.



Last year, Monkey was fully vaccinated and responded well to Pneumovax. When we ran the labs in February, he only had sufficient antibodies to 3 of 14 titers. Monkey received another Pneumovax shot (which was totally miserable). We waited the 4 weeks and had the labs drawn again. As we wait, he has green goop coming from his eyes and nose. What is so frustrating is that we just finished the stronger antibiotic less than a week ago. That was the 8th antibiotic since Christmas.



If he doesn't respond, we know that his immune system is not working and it explains the infections. It also means the possibility of monthly IVIG infusions and more sickness. If he does respond, his immune system does work and we begin the whole cycle of infections and testing all over again. I am worried he will respond and then it will take another year to find out if he maintains the antibody levels. If he doesn't keep them, I don't really know what happens then.



I haven't really considered the option that his levels will be good and that the infections will stop. It has been over two years since this struggle began and I just can't see it ending that easily. It has taken over my life and filled me with worry and fear for my son. I have held him too many times as he has endured the needle sticks, PICC lines, and scans. So many tears have been shed by him and I. I hope and pray that the news is good. For now, I just wait.

The Moon

"Mama, where is the moon?"

"It's not out yet."

"Mama, Noah is talking to me."

"Really, what is he saying?"

"He says to get him off of the moon."

I only wish I could get him off the moon.

"Monkey, Noah isn't really on the moon. He is an angel in Heaven. Noah is with God."

"Noah loves God. Why is Noah with God?"

"God needed an angel so he grew wings and flew to Heaven."

I don't know what to tell him. I don't dare say Noah was sick as Monkey understands sick. I don't want him to think something will happen to him. How do I explain to a 3 year old what happened to his beloved little brother?

These conversations keep occurring. I am not sure what triggers it for Monkey. We can be in the car, lying in bed, or just playing outside and he starts asking about Noah. It breaks my heart and makes me whole for just a few seconds all at the same time. I love my boys so much. How I long to hold them together just one more time.

Thunder

"Mama, I hear something."

"What do you hear?"

"It's thunder. Mama, the angels are bowling. Noah is bowling." (My Papa used to tell me that when I was little and afraid.)

"Mama, where is Noah?"

"Monkey, Noah is an angel in heaven."

"Where is he?"

"He is like a star in the sky. He is watching over us and sending us his love."

"I want Noah. I miss him. Mama, get him for me."

"Monkey, I can't get him. He is in heaven. I wish I could, but he is an angel now."

Mama, call Mima. She will help you get him."

_____________________________________

"Mama, the moon is out. Noah lives there. He is watching me."

"He is?"

"Yes Mama, he is watching you too."

"Mama, he loves you."

"I love him too."

"Mama, I miss him. Mama, was I an angel too when I was a baby?"

_____________________________________

I don't really know how to answer his questions. It breaks my heart and brings me closer to my lost son all at the same time. I mourn the boy he will never be and the brother that Monkey will never know. He left a void that can never be filled. I miss him. Monkey misses him.

A Day at the Park

Safe

I don't know how I feel. It is all so confusing and scary. All I know is that he hugged me and gave me the sweetest kiss on the forehead. I felt safe. I felt worthwhile. That has to count for something right?

Things are moving very, very slowly. It's hard for me to just be me and actually talk about my life. I am trying not to hide the details that make me cringe to think about. He has his own baggage. Two kids, a crazy ex-wife who decided that she gave up her youth when she had their kids. She is my opposite. She is more than willing to forgo a night with her kids for a night of partying and drinking. Listening to him makes me realize she is the female version of M.

I have no idea where this goes, but I am trying to just have some fun. I have been upfront that I don't know what I want. I am still finding me. It may turn out to be nothing, but I have to learn to trust again and it is worth a try. Just maybe I can be happy.

Happy Valentine's Day

I took a chance.

I still don't know what I want or even what would make me happy. I have no idea where it goes from here, but for a few hours, I laughed, smiled, and let someone be nice to me.

I even let him kiss me goodnight.

Butterflies

I'm nervous. What is that fluttering feeling?

He stands there looking at me. He doesn't do the head tilt or even seem to flinch knowing my story. He doesn't seem uncomfortable or scared of me like most people in his position. His face is kind and I find myself okay with Monkey meeting him. He just stopped by to say hello.

Butterflies? I forgot what it feels like. Had I not been sick or my sweet Monkey clinging onto my leg, I might have kissed him. I am losing my mind. I don't even know if I like him or if I just want to remember what it feels like.

He is kind, he makes me laugh, and he seems to remember me when the rest of the world has gone silent. He hasn't pushed or even questioned my hesitation to go on a real date. He remembered Noah's day. What am I so scared of? He is also getting divorced under similar circumstances. We both have enough baggage to sink a ship. Why can't I stop analyzing and just have fun for once? I am scared to jump in blindly and this dating thing is quite complicated with a 3 year old in tow. On the other hand, it makes me feel alive and energized in a way I haven't felt in a very long while. I think besides the butterflies, that little feeling just might be hope.

Noah

It has been three years and I miss you as much as I did the day you left us. I know you are whole and healthy dancing in heaven. Monkey and I know you are watching out for us and sending us your love. We hope you know how much we love you.

Monkey told me today that you are an angel now and that you blew away. I think he meant that you flew away, but he understands you are in heaven. He loves you and I know he can feel you in his heart. Please continue to bless him and protect your sweet, big brother.

I pray for sweet dreams of you tonight.

I miss you my sweet Noah.

Today

Right now I would have been sitting in the ER trying to explain to an incompetent nurse that he always desats when you move him. Why could she not understand what I needed? I just needed her to get us a room, a doctor, and some antibiotics. I was sure that would fix the problem. Never mind the central apnea and CPR. I can live with that...just keep my baby alive. I would do my part if they would just get him what I needed.

They moved in slow motion. No one had the sense of urgency that I did. His sats dropped to zero two or three times while we were in the ER. I don't remember anyone rushing to resuscitate him. I did it. I would rub his feet, blow in his face, and gently shake him to get him to take another breath. With each breath I would say a silent prayer and ready myself for the next episode. This process had started over a week earlier and had just continued to get worse. Even with that I couldn't see it. There was no way I would leave without him....

Today has been hard. I just can't concentrate on anything. I survived work, but it was a long day. Noah sent me a few blessings today. It started with an unsolicited hug from my best friend as we dropped our kids at daycare. All she said is that I needed it and she loved me. The damn broke and the tears fell all the way to work. She remembered.
My next gift came from a coworker I don't know well today, she mentioned her son had special needs. I told her I kind of understood and began telling her about Noah. She hugged me and told me she didn't know how I did it. I answered by telling her it is no different than what she does everyday. You do the best you can for all of your children. By her eyes, I knew she got it without me having to say much. She belongs to the "I didn't sign up for this club". Even with a living child, we both understand NICU's, brain MRI's, horrible neuro's, and the fear of whether your child will live. To have someone sit in front of me and understand was a gift. Thank you Noah.

My last gift was somewhat unexpected. There is a guy I work with who has shown interest, but I am just not ready to go there. He is nice enough, but I always got the feeling that the whole Noah topic freaked him out. He sent me an email today telling me to have a good day tomorrow even though he knew it would be rough. He remembered. I mentioned it once weeks ago. Maybe he isn't such a bad guy. Is Noah trying to get me to open myself up to the idea of letting someone new into my life? I know they are small things, but I am trying to not overlook Noah's gifts. I have learned that they are small and subtle. Gifts or not, I needed each of those moments today. They made me stronger and validated that Noah mattered.

I am going to spend the rest of this evening hugging Monkey as he goes to sleep and then sharing a bottle of wine with a few good friends. Thank you for your kind thoughts and prayers. They have given me strength and reassurance that Noah is remembered. I am blessed with two beautiful boys, good friends to help me through, and this sacred place to share and be understood. Thank you.

Two Days

Today I dressed him in a special t-shirt to surprise his dear Aunt upon her arrival to see him. He had a cold, but didn't seem much worse than the day before. The boys played in the jungle gym and we all just visited and held them. Why didn't I know that I only had one day left? I can't remember anything else from that day. Why can't I remember?

I don't know what to do with myself. I dug out the last outfit he ever wore last night. I so desperately wanted it to smell of him. I fell asleep holding that outfit. I slept with it for months after he died. I just needed to feel him.

I just want to lay in the floor and cry. I miss him so much. I go from feeling so sad and empty to just sick. It is so much harder this year. What if I am the only one who remembers him this year? Maybe I am just scared that no one will even notice or say anything to me. A piece of my heart is missing and lies with my dear sweet boy. Can't the world see the hole? Can't they see how broken I am? I am just so alone in all of this.

I am working tomorrow, but I am not sure how to get through the day. Tomorrow is the last day I ever spent with my boy. Noah died on the 17th, but at 3:22 AM. The 16th was the last time I saw his eyes open and felt him relax into me as I held him. Why doesn't the world stop? Mine stopped and damn it, everyone else just keeps moving. I don't want to smile and pretend my world is okay. I want to cry, scream, and just curl up in a ball for just awhile.

Monkey and I are taking the day on Thursday. I don't know really know what we are going to do. I just know I need to hold on to him. Maybe through him, I can feel Noah and maybe Noah can feel me.

Three years. How am I still here? I love him and miss him...