Our streak is not one to envy. So far we have spent these holidays in the hospital: Memorial Day, Carter's birthday, Neil's birthday, Flag Day, Fourth of July, Pioneer Day, Labor Day, and now my birthday and Halloween. I guess we really only have Thanksgiving and Christmas to make it a perfect 10. I am already so nervous about spending those holidays in the hospital. I may need to be admitted to the psych ward if that does happen.
Friday was my 3oth birthday. That in and of its self is depressing. But then to spend almost the whole day in the ER then be admitted to hospital almost put me over the edge. I had a fun little party planned for the 4 of us. Mostly for Carter's entertainment. Instead we had a short, mediocre party with the 3 of us.
The few minutes I'm not at the hospital each day are filled with constant reminders of who is missing in our house. I find his binkies everywhere. I fold his cute baby clothes that he doesn't get to wear. I walk past his dark, empty room and wish so badly he was home with us. Instead I drive down the street each and every day and spend the majority of my day sitting in a small hospital room with my baby.
Which leads me to the next problem. I have 2 "babies" that need me. And I can't fully meet each of their needs with them being in different places. Carter will go with me for part of the days and sit in the room and play with his Ipad or watch TV. But he gets bored easily and I can't blame him. Thank heavens for Grandmas who help me during the day and take a shift either with Jax or Carter. And thank heavens for wonderful nurses who dote on my baby and feed and snuggle him when I can't be there. He is the ONLY pediatric patient in the whole hospital. Goes to show how small this hospital really is. Last week the Peds floor was officially closed, now Jax has gone and opened it up! And since Jax is there, they have to lock down the floor so nobody steals him..........if someone did steal my cute baby I'm sure they would have him back in the hour after they learned of all his problems!
I am convinced that no mother or father for that matter, should EVER have to rush their baby to the emergency room. Know how many times I have had to do that with Carter or Jax? More times than I can count. Pretty soon I will have a designated parking spot out front of the ER.
And no parent should ever know the fear of having their phone ring in the middle of the night, see the hospital on caller ID and be told by the nurse to "please come quickly." Jax gave us quite a scare Sunday morning. Life flight or ambulance was almost called to give him a ride to Primary Children's. Luckily the problem turned out to be minor and he could stay in Logan. Which is good....I was still in my pajamas and I hadn't brushed my teeth.
Being a mom to a chronically sick baby is hard. Really hard. It's physically and emotionally draining. And I've learned that emotionally draining is twice as hard as physical. Sometimes I feel bad about complaining about my trial when it is obvious that others have a much heavier cross to bear. I know babies who shared a room with Jax at the NICU who have since passed away. I think of them and their families often. How hard and unfair life is for them. I cannot think of anything harder than losing a child. I was talking with a wise friend who has trials far beyond mine. I told her I could never complain or think my life was hard. She put it a really great way when she told me that just because it's not the "hardest" trial in life, it is still hard, really hard, and very real to me. Someone else having a harder trial does not make my trial any less, especially to me.
I remember when we were at Primary Children's last time and I was riding the elevator. I rode with a man, a stranger, who I guess was desperate for conversation. He said "Why are you here?" (At Primary's you can tell who is a visitor and who has children admitted by a special badge you wear.) I told him my baby just had surgery. He asked what for and not wanting to get into it I simply told him "He was born with an obstructed bowel." His reply...."Oh well that's easy." I just smiled and got off the elevator. Part of me wanted to scream and tell him that no, it's not easy. Jax's life may never be easy. And that 99% of bowel obstructions are easy but for some reason, we were in that 1%. I don't really believe in statistics or percentages. I know Jax proudly accepted this trial on the other side, but the mortal part of me still wonders "Why." Why him. Why does life have to be hard for a baby. I don't care that my life is thrown upside down. I care that he goes through so much. I would take short gut syndrome if that meant he could be healthy.
The other day I found some blogs of fellow short gut parents. I try to not look on the internet anymore about short gut. The statistics aren't always promising. Neil has made me promise to stop reading internet info.........but I'm glad I found these blogs. All about darling little kids/babies who live the life of short gut. And guess what? Among all the hospitalizations, infections, and etc I found happy children, happy families, and a new "normal" life. You can be happy with short gut. You learn to find a new "normal." Not the normal I use to live, but maybe a better normal. There were children who live with basically no side effects of short gut. There are others who still have TPN at 5 years old. There are some who moved across the country to be closer to a children's hospital. Those who sold their houses and quit their jobs to give their child the best shot at a healthy life. I realized you can even have more kids after a short gut baby! I realized we are very blessed. It can always be worse. Much worse. Modern Medicine and Science are amazing. We are so lucky to live so close to Primary Children's and to have the doctors we have. We feel that if we weren't lead to the Surgeon we had, Jackson's quality of life may have never been as good as it is now. I believe he was truly inspired by the things he did and the procedures he performed. All out of the ordinary and all beneficial to my baby.
This post may be depressing but a little therapeutic for me. Life is hard sometimes but that doesn't change the fact that I would and will do anything for my 2 boys. They are worth each and every heartache and tear.
To lighten the post up a bit: A cute pic of my boys, in the hospital, in their halloween costumes. They were the cutest kids there. And I can say that without lying since Jax is the only pediatric patient there!
7 comments:
Wow, that was a tear jerker Amanda. I think about you guys all the time. I feel so helpless. I don't know what to say or do to help. I'm really here to help with anything! I hope you know that! Your friend was so right when she said, hardest trial in life, it is still hard, really hard, and very real to me. Someone else having a harder trial does not make my trial any less, especially to me. Right now, THIS is YOUR trial, it is the HARDEST thing for YOUR family. When my Dad died, alot of people tried to comfort me by telling me that everyone has to say good bye to their parents. Yes, I knew all of that, but it did not make MY trial of saying good-bye and easier. It's ok to feel depressed about it. You're handling this all amazingly. I really admire you, I'd have probably been admitted to the psyche ward by now! You're an amazing Mom. I believe that these angle babies are only sent to angle mommies who can take care of them the best!
We really missed seeing you all last night! The boys look darling in their costumes.
Oh, and you're totally rocking 30!
Ahh, Ann's right. Total tear jerker. I'm a mess! You're probably thinking "welcome to my world."
I think about that a lot- everyone says to look on the brighter side because everything could be worse. They're right- every situation truly could be worse, even ones where we couldn't think they could get worse. But trials are trials and no matter how hard someone else's life may seem, the trials we go through personally are hard, hard hard. That's why they are called trials. But thank goodness for the Atonement. My favorite part about it is that it heals our sorrows and pains. On the days you feel down and feel like no one knows how you feel and no one knows how hard it is, there is always one person who knows exactly how you feel. And He's the one person who can heal your sorrow and make all of this a little lighter and easier to bear.
I'm sure you all were aware before you came to Earth that Jax would have these problems, but it's still ok to feel sad and it's ok that it's hard. Just because you willingly accepted doesn't mean it's not ok to feel like life isn't fair sometimes. You probably accepted because you saw the whole picture in heaven and the outcome was amazing. The eternal reward for all of you will be nothing short of amazing, I'm sure, but here on Earth it's just one day at a time. You are doing amazing. You are an inspiration to me.
Love you all- give that little monkey a kiss for me and tell Carter I love seeing his face on Face Time.
And 30 can't be too bad, can it? I can say that as the younger sister who won't be 30 for 2.5 more years. You make 30 look 25, really.
I think that you are handling all of these challenges that have been sent to your sweet baby and your family admirably. I have no idea how difficult things really are for you, but my heart and prayers go out to you and your family. Hooray for the internet and the ways it provides for connecting with people who can help and inspire you-- those blogs sound awesome. I was glad to see you out trick-or-treating with Carter, he is so sweet. Happy late birthday, and welcome to a new decade. Even with all of the current trials you're struggling through, I know that it's going to be a great year for you.
amanda, my heart goes out to you.
know that i am here praying for little jax. his normal will be just that, HIS, never to be compared to anyone else's. i'm certain that you will always be guided in helping him live his best life.
he's certainly lucky to have you.
:( Amanda, you have to be the strongest lady I know. The way you are holding up through this is amazing! Again, if you need anything, just give us a shout. We would love to have Carter over to our house anytime. I wish I would have known you were there for your Birthday! We would have brought you dinner, cake whatever you needed!!!! Happy Birthday by the way :) Hopefully this year will be a lot less stressfull :)
The night I read this post I was too emotional to respond. But I wanted you to know how wonderful I think you all are. And I'm glad that you'll share your thoughts and feelings in your blogs because you really speak a lot of truth. It's been an inspiration to me to watch you and Neil handling all these trials so bravely and so well. Thanks for sharing. We love all of you.
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