Yesterday, we received good news.
It's anticipated that next week MC will be transferred to an in-patient rehabilitation centre.
Good news, right?
Because of the holiday weekend, the hospital staff suggested that I immediately leave so that I could go and take a tour of the centre (about 20 minutes away). I called Duane, who was at work, and we made arrangements to meet on-site.
I arrived about a half hour early. I had only been at the hospital for less than an hour and, then, there I was at the centre.
I kept wondering, how in the world did I end up here?
Shouldn't I be back in MC's room, working out his legs, as we contemplated who would be the next cohost on Live! With Kelly. I was anxious to get back to the 9th Floor.
I walked through the double doors of the centre and was greeted by a jovial security guard. I asked him if we could start the tour a few minutes late. I explained that it was arranged last minute and that I was waiting on my husband.
No problem, he says. My wife recently asked me to take her somewhere she's never been before. I took her to the kitchen.
I thank him and turn my gaze towards the front door...
... still wondering, how in the world did I end up here?
I keep trying to lose weight, but it keeps finding me. I glance over at the guard and force a smile.
I return to staring at the door and begin to watch as child after child pours in. Some, at first glance, look identical to my little nieces and nephews. Racing steps ahead of their parents, they bound into the centre like a Category 5 hurricane. But it's then, that I notice, that most, if not all, are tethered to their caregivers by endless wires, monitors and bulky machines... all of which look completely out of place on their tiny little frames.
Life is like a box of chocolates, you never know what you're going to get. He's doing his best Forrest Gump impression and my mind immediately wanders to the scene where Forrest is at the doctor's getting fitted for his leg braces. I give a second forced smile which takes far more effort than the first.
Braces, walkers, wheelchairs. Children of all ages, walk, run, wheel and/or are carried through that door.
I find myself playing a game in my head. Will that be our Master Cheeks? Or maybe more like that one? Maybe a little like that one at first, but then as he gets older, much more like that one. But not that one, please. Please, not that one.
Sensing I'm about to cry, I walk through those doors for a bit of fresh air. A girl of about one is carried in by her father on my way out. Her mother trails with the obligatory oxygen. She smiles at me.
A smile. It's on my list of must-haves. So long as he can smile...
I enter the fresh air.
What, you didn't like that one? I wasn't even listening...
I breathe deeply, sitting smack in the sun on a hot brick wall. It dawns on me how little time I've spent outside hospital walls since arriving home. It reminds of my first "outside" experience "outside" of India... in the Austrian NICU garden.
A familiar feeling... how in the world did I end up here?
I look towards the parking lot and see a familiar face. Well, somewhat familiar. Given our alternating day/night shifts at the hospital, we're still trying to find time for that date night. (Scarlett included, of course.) I can tell my feelings are written all over my face. He puts his arm around me and we walk in together to begin the tour.
We pass room after room... full of sick kids. The centre is under construction, and yet, it's eerily quiet.
How in the world did we end up here?
I'm immediately anxious for the tour to end.
It's the oddest of feelings. I've spent approximately 142 days of the last 151 days in various hospitals in three different countries-- all of which have been filled with very sick children-- and it's rare that I've ever felt uncomfortable.
Why? Because they were hospitals. Where kids are supposed to go when they get sick. And then they go home. Because they get better.
This is not a hospital. And no kid is ever supposed to come here. They just end up here. Because they get sick. And even though they get better, they'll still always be sick. And even though they go home, they'll still always come back.
The tour ends and the guide asks if we have any questions. She can tell I'm uncomfortable/about to cry/close to throwing up/may very well pass out.
Suffocatingly uncomfortable.
It's the rooms, isn't? she asks. You must be used to private rooms.
I laugh for the first time all day. Used to private rooms? I just spent the past 4 1/2 months in India, I tell her. No, I reassure her. It's most definitely not the rooms.
She raises her eyebrows. India? she begins. But then she stops. I know she's dying to ask it.
How in the world did you end up here?
And I'm glad, for once, that I don't have to tell the story... because, at that moment, it's a question I can't answer.
It's anticipated that next week MC will be transferred to an in-patient rehabilitation centre.
Good news, right?
Because of the holiday weekend, the hospital staff suggested that I immediately leave so that I could go and take a tour of the centre (about 20 minutes away). I called Duane, who was at work, and we made arrangements to meet on-site.
I arrived about a half hour early. I had only been at the hospital for less than an hour and, then, there I was at the centre.
I kept wondering, how in the world did I end up here?
Shouldn't I be back in MC's room, working out his legs, as we contemplated who would be the next cohost on Live! With Kelly. I was anxious to get back to the 9th Floor.
I walked through the double doors of the centre and was greeted by a jovial security guard. I asked him if we could start the tour a few minutes late. I explained that it was arranged last minute and that I was waiting on my husband.
No problem, he says. My wife recently asked me to take her somewhere she's never been before. I took her to the kitchen.
I thank him and turn my gaze towards the front door...
... still wondering, how in the world did I end up here?
I keep trying to lose weight, but it keeps finding me. I glance over at the guard and force a smile.
I return to staring at the door and begin to watch as child after child pours in. Some, at first glance, look identical to my little nieces and nephews. Racing steps ahead of their parents, they bound into the centre like a Category 5 hurricane. But it's then, that I notice, that most, if not all, are tethered to their caregivers by endless wires, monitors and bulky machines... all of which look completely out of place on their tiny little frames.
Life is like a box of chocolates, you never know what you're going to get. He's doing his best Forrest Gump impression and my mind immediately wanders to the scene where Forrest is at the doctor's getting fitted for his leg braces. I give a second forced smile which takes far more effort than the first.
Braces, walkers, wheelchairs. Children of all ages, walk, run, wheel and/or are carried through that door.
I find myself playing a game in my head. Will that be our Master Cheeks? Or maybe more like that one? Maybe a little like that one at first, but then as he gets older, much more like that one. But not that one, please. Please, not that one.
Sensing I'm about to cry, I walk through those doors for a bit of fresh air. A girl of about one is carried in by her father on my way out. Her mother trails with the obligatory oxygen. She smiles at me.
A smile. It's on my list of must-haves. So long as he can smile...
I enter the fresh air.
What, you didn't like that one? I wasn't even listening...
I breathe deeply, sitting smack in the sun on a hot brick wall. It dawns on me how little time I've spent outside hospital walls since arriving home. It reminds of my first "outside" experience "outside" of India... in the Austrian NICU garden.
A familiar feeling... how in the world did I end up here?
I look towards the parking lot and see a familiar face. Well, somewhat familiar. Given our alternating day/night shifts at the hospital, we're still trying to find time for that date night. (Scarlett included, of course.) I can tell my feelings are written all over my face. He puts his arm around me and we walk in together to begin the tour.
We pass room after room... full of sick kids. The centre is under construction, and yet, it's eerily quiet.
How in the world did we end up here?
I'm immediately anxious for the tour to end.
It's the oddest of feelings. I've spent approximately 142 days of the last 151 days in various hospitals in three different countries-- all of which have been filled with very sick children-- and it's rare that I've ever felt uncomfortable.
Why? Because they were hospitals. Where kids are supposed to go when they get sick. And then they go home. Because they get better.
This is not a hospital. And no kid is ever supposed to come here. They just end up here. Because they get sick. And even though they get better, they'll still always be sick. And even though they go home, they'll still always come back.
The tour ends and the guide asks if we have any questions. She can tell I'm uncomfortable/about to cry/close to throwing up/may very well pass out.
Suffocatingly uncomfortable.
It's the rooms, isn't? she asks. You must be used to private rooms.
I laugh for the first time all day. Used to private rooms? I just spent the past 4 1/2 months in India, I tell her. No, I reassure her. It's most definitely not the rooms.
She raises her eyebrows. India? she begins. But then she stops. I know she's dying to ask it.
How in the world did you end up here?
And I'm glad, for once, that I don't have to tell the story... because, at that moment, it's a question I can't answer.
Oh sweetie. Hayden will make it through this, even if "this" takes a lifetime because he has you and Duane. You are his rocks, supporters, cheer leaders, strength when he doesn't have any, a shoulder to lean on, a hand to wave to him when he feels he wants to do things by himself. He will be strong because you are strong. My cousin, back in the 70's was diagnosed with leukemia at the age of 2. My Aunt left her home & took him to Richmond where they were supposed to have the best treatment. She also had a little girl of 5 at home with her husband. After the initial year stay, they would make weekly trips back to Richmond, more if necessary. Well as time went on, Jeff got better, relapsed, got better, etc. & because of all the chemo & meds they told my aunt that even if he lived, he would never be able to father a child. Well, fast forward 40 years, Jeff thrived after overcoming so much as a child, married and my aunt is now the Proud grandmother of a 4 year old, Jeff's biological child. Granted, he was the 1.3 lb. little Boy I keep posting about, but today he's doing just fine. Jeff was a miracle just waiting to happen, his child is a miracle after almost not making it. Whatever happens with Hayden, he will always be your miracle and will contribute to your lives & this world, no matter how small the contribution may be. Our thoughts & prayers are with you all as well as our love!!!
ReplyDeleteOh honey, I give you so much love, I know it has got to be so hard to see your child and just feel like no matter what you do you cant make it better. But i really believe this is just temporay and MC will be a strong young boy able to run with his friends and never have to go back. you are in my prayers every night. Hang in there you have a world of friends, here in the USA and all over the world. If you ever need someone to talk to thousands of us are here to listen and take some weight off your shoulders
ReplyDeleteMichael
B,
ReplyDeleteI feel your pain through your words so clearly. I can't imagine going through all that you are without having some serious cries, laments, and scary scary thoughts. It's always amazing how much you go through without sounding down, so when you write that you are feeling anxious and down, I really pay attention. And, we're all here to tell you that it's perfectly okay, expected, and NORMAL for you to have all of these feelings, and you're not letting MC down by having them.
Facing the reality of a child with long-term illness is next to the worst thing a parent ever has to go through. You will get through it though. You ALL will!
K.
Bernadette, my heart hurts for you. I'm sure this isn't the journey that you wanted and that you thought you would have, but you can do this. This journey won't be easy, but it will be worth it.
ReplyDeleteSo many thoughts and prayers coming to you from small town Iowa. Hang in there.
It sounds like a really hard day B. Like the others have said, you're strong and brave and so is Duane. Gradually things will get better and you'll feel better about this situation as things become clearer and you adjust to your new family life. S&MC are both so lucky to have a mum like you, and like K said its fine to cry, it shows you've been strong too long rather than showing weakness. Pull together as a family embrace the tight bonds between you. Thinking of you. Anna x
ReplyDeleteSending lots of uplifting ((hugs)) to you. You're such a courageous, honest and inspirational Mum. I really admire your approach to life.
ReplyDeleteStay strong - that's what mommies do, but we also need a good cry every now and then - so don't forget to just let it out every once in a while. You have a lot of people there to listen and closer ones to hold you. Look around the new facility and find a Mommies Group - there has to be one. They will be a valuable source of information, as well as, a group that can offer some advice where others cannot. Sending prayers to you and yours.
ReplyDeleteCan I just say that this all really sucks - it is really the case of life being totally bloody unfair (sorry to swear, can't help it, the situation needed it I think). You and Duane are total troopers though. You have earned your mummy stripes and then some. I am constantly amazed by your bravery (especially as I am having difficulty locating my own at present). You both have been given the amazing gift of two beautiful children and they are sooooo lucky to have you both. As always, my thoughts and prayers are with you.
ReplyDeleteYou were horrified and terrified. Makes sense to me. That was my reaction the first time I visited end of life care units for my 90 year old. It is spooky even when the person has had a wonderful long life. With a baby facing chronic problems while also living with a baby who is doing so well the contrast is huge.
ReplyDeleteSo your reaction is normal and usual. Know you understand this but emotionally you are human. SO HARD. Even seeing that the children present were happy. That is what you will hold onto, and that is what will move you forward. Mr.Cheeks has been so strong, he will continue strong and love and laugh and be wonderful.
The 4 of you will all make friends, hold each other together with love, and count each miracle as you go forth.
YOU NEED THAT DATE NIGHT AND DATE DAY AND DATE WEEKEND.
Take care of your miraculous self, and your miracle family will do best.
Your on-line family will be praying in all religions and carrying you in our hearts and thoughts constantly.
May the next time you go to the rehab center be easier and hope-filled. You are surrounded by love.
Old Ca Grandmother
It seems so unfair to me - people who go through such trouble to have babies should then be blessed with easy babies. Yet it never seems to work out that way. I think about you guys all the time, and I hope that Hayden's stay in rehab is short and not to be repeated.
ReplyDeleteOh, you explain your feelings so well. You know every parent of every child in that facility has been through the same thing. "This isn't what you signed up for." There's a lot of us out here. Most people don't have a clue that every pregnancy, every "planned" child is a total act of faith. A gamble on changing the entire rest of your lives. I remember the trauma and I remember having a migraine that lasted a full 24/7. Gradually, you sort it out into "information" followed by "action" along with any support that becomes available to you. As someone else suggested, a parents group will be your very best resource. God bless...
ReplyDeleteI love the honesty of your posts. We recently found out that our daughter is hard of hearing and even though I work in special educaion I was surprised by the overwhelming feelings I was experiencing until the audiologist reminded me that it is so normal. You are grieving the experience you didn't get to have. You went to India expecting to bring home two healthy babies and instead you've been taken on a detour. There is a poem out there that I loved as a special educator, not so much initially as a parent of a child in special education until again recently, called "Welcome to Holland." You can google it. It is okay, and healthy in fact, to mourn the loss of what you were expecting in order to move on and into the experiences you're having now. Know that so many people, including those of us who have not had the pleasure of meeting you, are rooting for you and your family. If you can't find a parent group that you're comfortable with near you, Yahoo Groups and Facebook (to name a couple) have online support groups for parents that are wonderful.
ReplyDelete-Kristi
This is a new phase in your life and I can only imagine how hard it is. I know you will make everything in your power to make Little Master Cheeks life as perfect as it could be. Hopefully he can move home some day soon aswell.
ReplyDeleteI truly admire you. Huge HUGS of strength and lots of love
Bernadette, I already know which one you are, but I wanted to send this to you to hopefully help you get through the moments when you feel like you felt in your post. Hang in there, and know you're the coffee bean.
ReplyDelete"The carrot, the egg, and the coffee bean
A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling.
It seemed that, as one problem was solved, a new one arose. Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to a boil. In the first, she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans.
She let them sit and boil, without saying a word. In about twenty minutes, she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her daughter, she asked, 'Tell me, what do you see?'
'Carrots, eggs, and coffee,' the young woman replied. The mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. She then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, she asked her to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, 'What does it mean, mother?'
Her mother explained that each of these objects had faced the same adversity - boiling water - but each reacted differently. The carrot went in strong, hard and unrelenting. However, after being subjected to the boiling water, it softened and became weak.
The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened!
The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.
'Which are you?' the mother asked her daughter. 'When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?" Think of this: Which am I? Am I the carrot that seems strong but, with pain and adversity, do I wilt and become soft and lose my strength? Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit but, after a death, a breakup, or a financial hardship, does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart? Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavour.
If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hours are the darkest and trials are their greatest, do you elevate to another level? How do you handle adversity? Are you a carrot, an egg, or a coffee bean?'
I really hope this helps! It has helped me many times.
My heart breaks reading this post. You're emotions are so raw and real, I can feel myself there standing next to you. I'm so sorry for your family and I pray for you all to find the strength you need to find the balance between this all. ((hugs))
ReplyDeleteSilly guard. He knows many new people there are stressed and wants to cheer them up with his corny old jokes. You handled that well. I'll bet some people don't.
ReplyDeleteYou will get through this and marvel at MC's smile.
ReplyDeleteCry when you have to, hope when you need to.
Hugs
God bless you and your family providing a lift when you need it.
ReplyDeleteLove and hugs to a special person who I know will deal with the cards she has in the most perfect way ...... By just being you.....mc is so lucky yo have you as his mum
ReplyDelete