Monday, January 26, 2009

Coming up for air .....



I should have been in bed awhile ago.But sleep would not or could not come to me.My body,although exhausted,could not be coaxed to give in and give up.Perhaps it wasn't my body after all.Perhaps instead it was my head.My head filled with a million and one different thoughts in some moments but then again, strangely feeling void of all thoughts in others.Able to string together meaningful conversations at times and at others,unable to coherently put two single words together.The first week of admission always feels a bit like submersion.We sink,like rocks, below the very surface of our lives,or life as we knew it,and we hold our breath.Struggling and fighting and doubting an praying and, just as quickly as we have been plunged beneath those raging waters,we reemerge and come up for air.Today I feel myself resurfacing but let me tell you, it is a struggle to reach the top.This admission,8 days in,already feels so heavy.I need to say and say again and reiterate, that it truly has nothing to do directly with Zoey.She is doing her thing,the very best she can.And then some.It's me.Totally and 100%,me.I am antsy and anxious and edgy and scared and sad and quite frankly ... pissed.Every single day that floor brings more questions than answers and as much as I tell myself that it is not for me to question or be given the answers,I still question and I still continue my quest for answers.Useless really.I had a lengthy conversation with Caitlin on the way home tonight.At the end of which,we decided that this leg of the journey feels absolutely surreal.I could never,ever have imagined,spending portions of my day in conversations with other parents, that revolved solely around the mortality of our children.And the weird thing is ... the words flow effortlessly.Matter-of-factly and usually there is no dancing around the elephant in the room.I could never,ever have imagined,that right before my very eyes, a very sweet,longed haired five year old roommate,would lose practically her entire head of hair in a matter of a few days.And to watch,a life altering event such as that, done with absolute acceptance and adaptability, as she pulls on a hat and skips innocently to the playroom.I could never,ever have imagined, that in my life time I would stand at the threshold of a hospital room,eye to eye with a friend, a fellow mother,holding her precious baby boy,knowing in that moment, it was quite possibly going to be the very last time that I had the privilege of gazing upon that sight.Not ever.Surreal would be an understatement.This post could be filled with more surreal moments of our new normal but in the end,the hashing and rehashing of the unfair happenings of the 4th floor gets me no where.In order to fight my way to the surface,push past the current,I must visit and sit with and process and remember,each and everyone of these surreal moments.And after,find the gift in each one of them.Somehow I always do.Ones are easier than others but I search and I find them.The other night I was flapping,tonight I am swimming or rather treading water at best.My faith continues to be the number one thing that sees me through my days.That and Zoey.And of course the love and support of our family and friends and you my blogging community.A gift in and of itself,borne at another time when life seemed darker than I would have liked it.The out reaching in comments and emails is so beyond touching.Virtual strangers that take time out of their days and use their precious moments to let us know they are thinking of us and praying for us and sending us good vibes.Many of which are fighting battles of their own and with their very own children.We are humbled.I can never and will never say that enough.On a high note ...Wednesday Zoey and I are going to have some very special visitors.We are going to meet,face to face our little buddy Reid and his mommy Cheri.They live relatively close to CHLA and well,Wednesdays the day.I will be posting pictures of that for sure.I do believe the deep,dark ramblings are over ... at least for today.Sometimes I think it is important to get this out and share, in order to help people,on some small level,understand where I can emotionally be found on certain days.Those days can also morph into weeks.Just a casualty of the process.I just hope that maybe,just maybe, the unanswered calls and emails or uncommented blogs,won't be taken personally.Some days I am just in it deep.This week I was drowning.

*Taylor and Brandon came for a visit today.What a nice distraction it was.Zoey just loves company and she was so excited when they came through that door.They brought this little push car for her and boy did she love wheeling around in that.She sits fairly upright in it,with the occasional left side stroke lean.Not nice I know ...but true.We had a number of comments on her lean.All innocent enough but when I said she had a stroke and had just mastered sitting well,an awkward silence followed.But by days end she was a pro.And the mask .... do you think it is big enough for her face?I plan on making millions when I develop that child size receptor mask for Down syndrome children.Between the size of it and the fact the straps don't fit on the back of her flat little head ... suffice it to say ...it's ridiculous.

28 comments:

Gabriela said...

Dear Heater
I read every day in your Blog. I can not understand everything. But I'm very impressed by your power, by your love.
I might write a lot, if I could more english. Thank you for writing. All my best wishes for you all

Gabriela

Anonymous said...

Heather- you need not feel badly about your "flapping, treading," etc. This is an outlet for you, and we all read it and our hearts go out to you and of course to precious little Zoey. Love her new "mode of transportation" Wheels to move for Miss Zoey!

Love and hugs to everyone

Bluebelle

Cammie Heflin said...

But she wears that huge mask well! Prayers your way!

Googsmom said...

{{{{{{{{HUGS}}}}}}}} Still Praying everyday for your sweet family :) Brook has the same car. So fun!!
Jennifer

The VW's said...

Still praying!!! I really can't imagine what you are going through! Even though we have spent MANY months in the hospital with Gavin, I know that it's not the same. I do know how immersed I would get being in that atmosphere and seeing so much suffering. I definitely felt like I was drowning or sufficating somedays! Keep your faith and keep on getting it all out! I know that was always the best medicine for me. I'm thinking of you often and praying for you more!

Hugs from MI,

Alicia and Gavin

Anonymous said...

Heather,
I was just catching up on Miss Zoey. What a trooper she is!
Don't be surprised by your feelings. They are normal...for lack of better word. As far as the large sized masks. Dont let the hospital fool you. They do make child size masks. Carly had several. The problem is, the hospitals dont want to order two sizes. They would rather have these little ones just deal with the HUGE masks. We only found them by accident. We were in the ER of a different hospital. Not our regular hospital. We had taken Carly there due to a sudden blood infection. They had the small child size masks there by the dozens. I was surprised to see child size. I had never seen them before. The nurses gave me about a dozen of them to bring home once we were released. Anyway, the small masks are out there. Somewhere.
Praying for you all,
Joany and Carly
carepage
carlyscarepage100

Lacey said...

She looks gorgeous. Yeah the mask is a little big. I'm putting her blankie in the mail tomorow. Watch for it in the next few days. Kisses from Jax

Anonymous said...

Heather -
Thinking about you and yours every day. Go Team Needham! You're powering through, and I'm praying for zero again - that is the right prayer? :-} Give Zoey an extra hug for me. She's such an inspiration. Christy P

Jennifer Mezines said...

That is crazy that a children's hospital does not have the proper size masks for these angels.
Is there something that I can make for her (personalized with her name of course)....or does it need to be something special that helps keep the germs out? I did see some online and I would be glad to send her some. My 6 1/2 year old son has been reading Zoey's story with me, and has really become "attached" to her. We read about her every evening. I know he would love to do something for her....check these out and let me know....or if there is something I can make for her, we can do that too.
http://www.masksnmore.com/kichfama.html?gclid=CNDDnNuSr5gCFRBbagodkjVTTw
Jennifer and Kellen....

Just Another Ordinary Miracle said...

Keep fighting the current. You will resurface in the end - there is no other option. Ms. Zoey looks as beautiful as ever. I am always so amazed at these kids and there you are face to face with so many of them, and their parents. God truly qualifies the called, not the other way around. In times like these everyone always looks for common ground in their own life so that they may relate to you in yours. When Ivey was confirmed in our church, remember she had already been baptized in the hospital because we did not know her fate, Father Ard spoke about holy water, our deep water that we swim in. When you get bored you can read the sermon, not your typical sermon. I would say that you are most definately submerged in Holy water now. You will resurface. You have the strength of the rest of us to help pull you up.

Michelle said...

I am so excited you get to meet Reid and his mom...what a wonderful encounter that will be. I just got in touch with her and hopefully started another new, and deep friendship. I can't wait to hear all about it. Zoey is beautiful, mask or not...but yes, those masks are a little ridiculous.Keep kicking my friend...do your part that's all that's required, the rest will be upto something greater, something else that will help you back to the top! Until then...my friend, we are hear to bare you up as always!

Mia hat eins mehr said...

My friend,

I know so much about those feelings and those surreal situations. You know, the floor with the kids sufferig from cancer was just 2 floors beneath the PICU Mia was in. As we were there several weeks I met other parents as well. *sigh*
Now. I think you gotta let it all out - like you do - to get the stuff out of your head. I also know this feeling of your body beeing sooo tired but your mind just goes and goes...you cannot get some rest. This hotel is surely a place you never wanted to be, and we all do pray that Zoey and you can soon leave those days behind. *pray, pray, pray*

All my good thoughts go to Cali!
Go, Team Needham, go! ;-)

Anonymous said...

This from Great Aunt Bluebelle (2nd time) today: I was revisiting the site and I held back the first time commenting regarding those TERRIBLE MASKS. I've mentioned it before, but it bears repeating: Why, WHY, in a CHILDREN'S hospital.... ARE THERE NO CHILD MASKS.?!! After I read Joann/Carly's comment that there are indeed children masks AVAILABLE BUT MOST PROBABLY LACH DID NOT WISH TO ORDER FOR WHATEVER REASON, I was ready to board a plane for LA and take on the hospital myself. However, reason has set in and I will hold back on my desire to "take 'em" on! Now, how's that for flapping Heather. sorry

(Mark - how's that for being "on my high horse" as your grandmother would say}

Hang in there....

Love

Bluebelle

Anonymous said...

Just wanted to let you know that Kimberly Clark makes a child sized mask. They aren't pink(we've been looking for pink ones for three years now) but they are adorable and fit well. They have disney characters on them. This is the reference number 47127. You can order them on the website. Our Ashley Kate is a transplant patient and has also been through an 18 week course of chemo. She's a pro at the whole mask thing. Even at 3 she's learned its her ticket out of the hospital room or out of our house. I hope this helps. Even if you have to order them yourself. Sorry the hospital isn't already ordering them. Keep up the fight. Your doing an amazing job and so is Zoey. I think she's just beautiful! Sincerely, Trish Adams

Anonymous said...

try not having large enough diapers in a peds ward....had to bring our own at last admission...lol that was after not having any cooling measures available....finally got a bag of ice....

The VW's said...

Heather,

Could you please e-mail me your address. I have something to send to you and Zoey. You can get your address to me at javanderwall@yahoo.com

Thanks so much! Hang in there! I'll be praying!

Alicia

Joella said...

Sweet Heather,

GOD is the one who gives you the strength to get up everyday and go about your everyday living. I'm praying as I write that GOD will renew your strength, pick you up out of the water, dry you off, blow life back into you and give you and your family more strength to get through another round. You need to try to let him do it, stop fighting, and let him take charge. It is unfortunate as adults that we all are at fault. It is our nature as adults to be in control and do it ourselves. We have to be taught by watching our little children, to let go. Why do you think Zoey is doing better than expected, has that amazing smile on her face and the glow in her eye? She doesn't know any better, she has someone in control of her life right now fighting the fight. I don't know if you have read my blog about "Life Lesson" jzaccessories.blogspot.com if you did you will have a better understanding of what I'm about to say. Maybe you are at the hospital for another season than just to fight Zoey's cancer. Maybe GOD is going to turn a terrible situation into something good, for all though little ones you are talking about. It sounds like that hospital needs some improvements and maybe you are the one to help get it done, starting with the mask! "By the way Zoey would look cute in anything she wear." And maybe you don't have to do it alone, just maybe all you blog followers will be the ones to help you too, like the great info Trish Adams gave you. Let us all help you too.I will pray that GOD will show you, if that is what he wants you to do. I would like to have your address so I can send you & Zoey something (jomariehouse@hotamil,com). Can you receive mail/packages at the hospital and can she/you have anything in her room, like flowers, balloons,DVD etc... I am so sorry this is long, but I just had to say it and I couldn't stop.
Prayers and Blessing to you

Melissa said...

My goodness Heather...
I'm so sorry for what you are going through. You are an amazing woman & mother! Zoey is such a lucky girl to have you & I would be pissed too. I can't even begin to imagine the emotions/trials.

I stand amazed with your strength & I have to apologyze to you...Here I was having a "pitty party" because my son had a NGTUBE do to a stomach virus & is now doing so much better. I was feeling overwhelmed, but I'm finally adjusting...then I come to check in on Zoey & BANG...it hit me like a ton of bricks! HOW SELFISH OF ME! How dare I complain or be overwhelmed over a little NGTUBE when there's your little warrior Zoey fighting a battle that I can't begin to imagine.

I will pray & pray for her!! Sending you all of the best wishes & prayers for a great healing;)

The Third Born said...

the best part was as soon as we walked backed into the room she ripped it right off. but while she's in the halls, she knows it has to stay put.
you can still see her smiling under that mask:)

tell Niquel i say hi. yeah?? haha

Cheri said...

Reid is all geared up to meet his girlfriend!! :)

D & C said...

Ooh Zoe Muffin, I love your car! Lucky girl! Wear your seat belt.
And you are such a big girl keeping your mask on. You never cease to amaze me with how agreeable you are.

Miss you miss you miss you. Though you should already know, I love you so much. Give Momma (and Daddy) some extra kisses (or actually hugs for germs' sake), but save me a few for when I'm home in a few weeks.

Also, you have my permission to kiss Reid tomorrow if you want. Have fun with your little buddy! I cant wait to hear all about your visit.

Sleep tight love bug,
Cait (Danny too)

caitlin and daniel said...

no idea why it says (amp;) on the last comment. it should say and.

Cait
xo

Mia hat eins mehr said...

Heather,

I am so curious about Zoey meeting Reid ;-) Hope all is good over there!

Prayers and Hugs to you -
Claudia!

Christie Nacole said...

You are so inspiring! As a mother and as a family member of a loved one with down syndrome. I absolutely LOVE to read your blog and get inspired and sometimes cry, in a good way of course!

Anonymous said...

Heather, hi. I think her left side looks good and WE know it's getting stronger, for heaven's sake. I'm so proud of her in her mini-car. Why do I like the mask??? I do though. Ask them for the perfectly fitting childrens size masks they use in the commercials asking for money $$$$$$$ at CHLA. Hmmmm, wonder what they'd come up with. Keep trekking, we are holding hands, love and prayers, Christi

Danette said...

Zoey you are soooo cute in your new convertible. Hope you had a great visit with your pal Reid today. Those masks have got to go. Look for a box of 75 child size coming to your house for when you go home. Lots of love, good thoughts and prayers always coming your way.

Kele said...

Such cute pics! I agree with the other comments, she would look precious in anything! Sooooo tickled Cheri and Reid are coming to visit! Can't wait to see the photo's!
I can relate to the days you feel your drowning... hang in there H! You guys are always in my thoughts. Sorry time doesn't allow us to talk more, would love to visit when you have a chance, just call when you can.

Judy said...

Awww even over that huge mask, you can see Zoey's eyes just sparkling! She is just beautiful Heather! I got you covered in prayers, girl! ((((((hugs)))))))