Being a mother is the hardest and most rewarding job I have ever had. It has completely wrecked me. It is so sacrificial. The love I have for Alden is overwhelming. It is exhausting. It is genuine, and pure, and right.
I look at Alden and wonder why God chose me to be his mom. Me- a broken, selfish, lazy human being. I am so glad he chose me. So, so glad. I can’t believe that I get to hold a chunky, pure, sinless little baby boy…and I get to LOVE him. I get to cheer him on throughout his life. I absolutely adore him in every way.
I love his laugh. You know…that deep hard belly laugh? Yes, that one. His is the best. It is music to my ears. It is a sound I never thought I would have the privilege to hear. It is a treasured gift. I love when he looks at me in the mornings when I bring him into bed to snuggle. His eyes speak for him. I know they are saying, “I feel so safe and loved here with you.” I rub his head and tickle his eyebrows until he dozes off to sleep. He is so peaceful. I love his curiosity. The way he looks at his fingers and hands wondering, “what the heck are these things?” It cracks me up! I love when he chews on his toys (he is teething) and grunts or growls because it isn’t as satisfying as he hopes. His frustration makes me smile because I know that he is learning…discovering…growing. His scream is a wild one, but oh how I love it. I know when he is faking it too because his eyes don’t water and his face doesn’t scrunch up as much. He is the greatest gift Sean and I have ever received. I love that he holds tight to his father. His trust for Sean at such an early age is rewarding. Sean was made to be his daddy.
Alden is 6 months old now. He is 16 1/2 pounds and gaining the weight that he needs. We have reintroduced solids, and so far he likes pears and bananas. We mix it with rice cereal and similac to make it a little thicker. He will be meeting with a new occupational therapist (ot) down here at St. Pete’s and will have another swallow study done. Alden’s team at Children’s will still make all the calls regarding his caloric intake, amount needed, etc.
Alden is doing great with his physical therapy, too. He is rolling from front to back and is very interested in his toys. He is doing very well. We are working with him here at home a lot. We are practicing helping him roll from stomach to back, sitting up straight, (he is stiff and falls to his left side often due to a large amount of space) and pushing up with his arms while he his on his stomach. He gets very frustrated and tired, but it is good for him. He absolutely hates tummy time. I have a feeling he will skip the crawling state and go straight to walking.
Alden is also making appropriate noises and sounds. He does his “oohs,” and “aws” and his “blah, blah, blahs.” It is so cute! He screeches and yells when he is excited and upset. We are so thankful he is developing well. Even though he might be a little behind, it really doesn’t matter to us. To us, he is developing just as we expect.We have nothing else to compare him to, so for us he is doing everything just as he should be.
You know, CDH is such an emotionally draining journey for me. And I know it is for others as well. It brings about emotions that are hard to communicate because sometimes they just do not make sense. A few examples for me personally are the fact that I miss Seattle Children’s and I am actually dreading the day we can toss the NG tube. I’ll explain.
Living at Children’s brought trauma and joy. It robbed me of holding a brand new healthy baby. It robbed my experience of jumping into motherhood without knowing one thing. I hated being there because I could not hold Alden, bond with him, kiss him without wondering if it was actually hurting him than helping him (due to over stimulation). I could not rock him when he was sad. I could not make him feel better with a tight snuggle without asking for more Morphine, or Ativan, or Dopamine, or antibiotics. Children’s meant, for me, that my son was critically ill and that he could die-that he may not come home. Whatever it was that was trying to take his life tried really hard, and there was nothing I could do but beg God to let us bring him home. I remember thinking that if Alden died, I would want to die too. And then the hemorrhage happened. And you know what? When I was wrapped in all the blankets and towels and put in a wheelchair while we waited for the ambulance, I didn’t even say bye to Alden. I didn’t say goodbye, or I love you, to him. I remember thinking in the ambulance that if I died, I would miss out on his whole life and I didn’t say goodbye. How could I have forgotten to do that? To kiss him one last time. To soak in his smell. Who cares if I was bleeding out. I should have done it. It is something I still am having a hard time dealing with and I know it doesn’t make sense, and that because UW was able to save my life after such tremendous blood loss, and that Alden kicked CDH’s butt with great strength and determination, I should be over it. But I am not. Not yet. It hasn’t gone away, but maybe one day it will.
But Children’s did give me security. I knew that he was in the safest place in the world. I had doctors and nurses on hand when I needed help. They taught me how to do the most common parental duties, like bathing and changing him, how to swaddle him, and rock him. They encouraged us and cheered us on, hugged us, cried with us, and laughed with us when we couldn’t sleep and watched endless amounts of Grey’s Anatomy during the night (I know, I know. What an odd show to watch as code blues are going off in the background). They loved on Alden and cared for him when we would have to go do laundry, or eat, shower, etc. They felt like a family. They cared for him like we care for him. We shared my son. Children’s saved my son’s life. I am forever grateful.
The feelings I have are so scrambled in my head. They don’t make sense to most, even to me. And it is taking me a long time to even process what the hell we just went through. I am just beginning to figure out why I am dreading the day we give up Alden’s feeding tube. That day we will celebrate, I’m sure. I can picture Sean’s big smile and sigh of relief. Right now, I do not want to get rid of it. It is a way for me to tell his story, our story. I am scared that without his tube, Alden will be forgotten….he won’t matter anymore. Ridding of the tube has nothing to do with his nourishment or health, or anything like that. Of course I will be excited that he will be in a place that he is able to take in enough food, and keep his energy/weight up. The NG tube, for me, is a part of who he is. It is a good thing that he has it. It is a life line for him. And I know the day is coming soon. I already hate this day.
Another thing I am trying to process is why I feel like I have to be “super mom.” I, without the help of a professional, have concluded that I have SO MUCH GUILT. I feel as if I can’t be frustrated when Alden is crying. That I can’t watch t.v or nap, or draw, or write, or do anything except tend to him because his life is what I wanted so bad when I was pregnant and when he was in the NICU. I feel so guilty when I take a longer shower (which the entire time I can never actually relax and enjoy it) because I worry worry worry or feel like I am a bad mom because I am starting his feeding one hour late. It’s all jumbled in my mind. I am exhausted.
CDH is a never ending battle, not just for Alden. I feel old, and tired from the worrying and anxiety. Please pray it goes away soon.
Alden’s next appointment is March 5th up at Children’s. He will be getting his 6 month shots (fist pump for being pro-vaccine, but nothing against those who choose not to) and has his 3rd RSV shot soon. He also has another PT appointment next week. February has been and will continue to be a busy month!
We are a very happy family. Alden loves his dog Annabelle, even though she licks his face sometimes. He giggles at her and tries to play with her. He loves his new walker, although he did walk forward the other day and it scared him really bad. Ha ha. He loves being tickled by his shoulder blades, cries when we leave the room, laughs hysterically when we make the sound, “pew pew pew,” and enjoys sleeping on his side. It is funny….how your kid is their own person, isn’t it? I love who Alden is becoming.