One of Those Days

Usually, I have a pretty good, positive outlook on things. But today has got me down for some reason. It's just one of those days. 

Yesterday, we went to our developmental followup appointment. This is standard practice with preemies. The doctors just want to check up on these little babies and make sure they are developing properly and doing all of the things that they are supposed to do. 

Jack was very crabby for his appointment and just not himself. I was wanting more than anything in the world for him to be his happy, smiley, giggly self...especially because the doctor we saw was one of the first doctors to take care of Jack in the NICU. I wanted her to experience a small amount of the joy that we experience every day. Jack was clingy and whiny...he was getting over a cold. None the less, it was great to see our doctor. I have never met a doctor that cared so much about Jack and our family. She is absolutely amazing and I know that she is still only an phone call away if we need anything, anything at all. We had a quick, great chat and she shared some of her personal experiences with me. She is truly an amazing person and doctor.

Anyway, Jack got rave reviews at his appointment. He is at the top of the preemie growth chart and is doing everything he should for his age. However, he sits "funny" and has some awkward motor skills that the doctor wants to watch more closely and begin physical therapy to fix. Ugh, why?!?! Why my Jack? I know this is a small issue, but I am really longing for "normalcy" in my life, in Jack's life. I just can't get over this issue and it frustrates me very much. I don't want any more appointments or issues. But this is what was recommended, this is what he needs, so I will be on the phone tomorrow setting up all of the proper avenues to get physical therapy started.

It's just one thing that got me down. Jack has not quite been himself since for quite a few days now. One day he will be fine, the next not so fine. He has been having spells of vomiting and diarrhea, but no fever, this is bad news for Jack. I called our GI doctor and got him in while we were in the area. Jack has not gained any weight for quite some time now, and I can really see today that he is looking thin. Some tests were ordered and hopefully we will have some answers tomorrow. Everyone says "Oh, it's just a bug, it's going around", but I know my baby, and he has had a bug before. My mother's intuition tells me that something is going on, something is not right, and I can't take it anymore. I am not going to sit by and watch my little boy lose weight. He needs every ounce he's got.

We got a chance to stop by the NICU to visit some of our fabulous nurses, we saw the doctor that was there the night Jack got sick (he discharged Jack too), we even saw our surgeon and his PA, and our amazing dietitian. Even though jack was not himself, it was amazing to see everyone's faces light up when they saw him! I am so glad the we can go back for visits and show everyone how their hard work paid off for Jack and our family. 


We were discussing some food issues with the dietician, things that work for Jack and things that don't. He was telling me about some other families and how some of these kids just can't tolerate dairy or sweets until they are three, four years old. I guess that I just haven't got it through my head yet that Jack's condition is for life. Things are going to take a very long time for him to be what one would consider "normal". I keep waiting, waiting for him to "get better". I thought he would be better when we came home from the hospital, then at six months I thought this would all go away. We are quickly approaching nine months and a year, and Jack is not going to be "all better". This is not going to just go away. Jack will have issues with what he can and can't eat for a very long time.  It's nothing that I can't deal with, it's just got me down today. I want "normal" for my little one. But I guess everyone has their own "normal" and we will just have to invent ours.

So, it's just been one of those days. One of those days where I again ask the questions, "Why? Why me? Why us, our family? Why Jack?" It's been one of those days where I feel myself being not so strong.  But, I am grateful, and I will do whatever I have to do for my son. Tomorrow is another day, another day that I get to spend with my sweet baby boy. No matter how under the weather he feels, I still enjoy comforting him and trying to get him to squeeze out at least a half a smile for me.

Jack, I love being your mom no matter what. Life is what you make it and we will make it the best life ever for you, no matter what it takes. Tomorrow is a new day, a fresh start. I hope you are feeling better. I miss your smile and laugh. I need you to lift my spirits. I love you...XOXO

How Preemie Moms Are Chosen

(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."