i will always remember details about the session where carys' physical therapist told me her suspicions about my littlest.

the light overhead was flickering in an annoying manner. the PT, annie, was wearing a navy blue cardigan (i would like to think it was part of her uniform and that she never would have chose this for herself) and it had white furzies on it from being washed too often. she had a pink barrette in her hair.

she stretched little carys in quite a few directions, and focused on her legs and neck. she moved next to me and pointed out how carys' face was flat on one side and more rounded on the other: caused by poor muscle development.

then she moved away from me, and carys, who was lying on the table, not playing with her hands or kicking her legs. just lying there still sobbing from the painful stretches. it was if she didn't want to be part of my pain, and that we needed to make eye contact for her to determine how to introduce the conversation.

"what did (queen mary head pediatrician) dr lam tell you about marie?"

(they call her marie because the chinese have trouble pronouncing carys, those letters together are not a word for them. sela is also pronounced sella. fair enough. i like marie.)

"what do you mean?"

"what did she tell you you could expect?" and she gestured, she had nice nails, with her hand to carys lying there, still and red eyed. even then carys could produce tears.

and suddenly, i knew. what she didn't want to say but wanted me to realise.

"you think she has cerebral palsy."

"yes. we won't be able to know for sure for at least one year, but it seems so. the hips are so tight, the neck is so stiff and unyielding."

cerebral palsy.

in a minute of clarity, i decided that i would not overreact. crying didn't occur to me. trauma and bad news were nothing new to me, and i had three babies home from hospital to show for it. i would sift the information with other facts. how often she wanted to see carys, and when she next wanted to see her.

when should i make the next appointment for?

tomorrow. the sooner we can start improving her, the better chance she has.

tomorrow. this probed my internal alarm a little higher.

how often will you want to see her?

three times a week.

okay, this was serious. poor little carys.

do you understand what i mean about cerebral palsy?

yes i do.

you seem very calm.

i'm just grateful she's alive.

and i was. i am.

i went home and didn't do a lot of internet research. at one time i might have done, but this was not the time. they weren't going to know for at least one year, why put myself through the worry until i needed to.

but i did call my mum, which in itself is not unusual. we talk often. makes me smile, remembering the months of poverty level existence in hong kong when i called my mother maybe once a month and talked for ten minutes.

i told her about carys. i don't think i was overly hysterical, i tend to go flat and factual in these cases.

"well, tessie, if anyone can handle this, its you."

"oh, i know i can handle it, mum, its just, i don't want to."

that's what it came down to. i just wanted to lay my head down and rest easy for a while.

didn't happen. i don't know if i really expected it would, but i sure hoped for some relative calm. soon after sebastian's ears were tested and it was discovered his right ear had middle and inner hearing troubles. then it was really busy.

and now we are moving into 2005, and the triplets will be one year old for most of it. and we are going to learn more about how their extreme prematurity has affected their brains.

i know i can handle it. i know i will love them regardless of what they achieve or what doctors discover. i just am weary. and love doesn't rejuvenate, it actually tires me more. because if i didn't love them all so much, it wouldn't matter as much.

but i couldn't love them more, and so i am trapped and tired by the best thing in the world. love.

i have circles around my eyes while i am encircled in love.

lucky, weary, me. 

Comments

[Scully]

You're an amazing woman, Tess. I can't imagine what you've gone through, with your own challenges and then with your children.

I loved a book when I was a child - Karen by Marie Killilea. It was written in the '50's and has a very '50's sensibility, but it's a wonderful book of faith and belief. It's still in print.

I don't want to give trite platitudes, but I'm always inspired by your life and your children and your blog. Thank you for sharing.

[Carmen]

Tess...

You are an inspirational woman with stamina, cheer and the ability to look at the good in ANY situation. Your sharing of such intimate information such as this shows how unwielding you are in the fight for your children's well being. I think we could all learn a lesson or two from you!!!! Thank you for being YOU!!!!!

[Brandy]

Oh Tess,

I know I have told you this many times, but I admire you so much. You have been through so much and you give your children everything they need, mainly unconditional love. They are so lucky to have a mom like you.
I'm also so scared of what this year will bring for the boys. CP, brain damage, slow development, Blane not crawling until after he is two and then when will he walk, the severe hearing loss, etc... You know exactly what I mean. I guess we have put on a smile and some makeup under your eyes and go back to being the best moms we can.
I wish I could tell you I felt like everything would be fine with my kids and yours but I can't. But I do know God gave us these kids so they would get all the love in the world.
Tess, you are the greatest mom. One day you will have no worries but screaming children. LOL!!! Best wishes and I will be praying for you.

[Trinie]

Tess darling,

I wish that I could come over, give you a great big hug and let you talk about your worries and fears for your children. You are a fantastic mum and you are giving your children the very best thing that you can - unconditional love. Hang in there my friend. I will keep praying for you all.

[Mum aka Mo aka Maureen]

Ah darling, what a beautifully written blog. It makes me think of the old song, "Love Hurts" which Roy Orbison sang.... I think it was Roy! Your children are so blessed to have you and magnificent Charles as their parents. Love you all very much,
M xox

[Janis]

Tess,

I wish I had wise words to say, but eh, I'm not that bright. ;)

I know that whatever may lie ahead for your daughter, for all your children, you will face it with dignity, compassion, and much love.

As mothers, we feel immense fear when we learn they may be/is something wrong with our little ones. We want so much for them to have lives easier than our own, lives free from hardships, lives full of good health.

My thoughts and prayers are with you, with your family.

Much love. xoxo

[Karen Ritchey]

Tess,

You are such a gifted writer. Your topics are always so interesting. It gives us such a neat look into your lives.
Yes, you will handle whatever comes along, and God will walk with you and your family
along the way.
I love reading what's on your heart. I never tire of it. Thank you for sharing your
lives with us.

Love you,
Karen

[Auntie Pammie]

Tess,
I remember the day you called me and shared this news with me. I of course wanted to say that there is no way this could happen and that they are wrong. To this day that could be the case. Regardless of whatever the outcome is, Carys is one strong young lady. I tell people about how she beat a 10% survival rate when she had the aspergillosis, and then they see her pictures and see those bright sparkling blue eyes, and they all say "That is one happy little girl, who is so full of life that her eyes shine".

You are an amazing mother and I always am complimenting you on the incredible job you are doing. IF anyone can handle this, you are the one who can!!

Time will tell if Carys has CP or not, no matter what , she is an amazing little girl who has beaten some pretty incredible odds before. I of course will be always wishing the best for you and your family.

[Kate]

This sentence was a revelation to me:

"i know i can handle it. i know i will love them regardless of what they achieve or what doctors discover. i just am weary. and love doesn't rejuvenate, it actually tires me more. because if i didn't love them all so much, it wouldn't matter as much."

Thank you for sharing this - for me you've expressed my feelings regarding my daughter perfectly.

My little girl was not premature but she is severely developmentally delayed and no-one knows why. After 2 years, 2 months I am so very weary. I love my daugther with all my heart. I loved her the minute she was placed on my chest - a tiny newborn - and my love has only grown and grown - despite an incredibly difficult first year and a challenging second one. But the daily hurdles that we face, plus 15 sessions of therapy each week, have worn me down. As you say, if I didn't love her so much, it wouldn't matter so much... but so much of her future is unclear to us and I worry all the time.

[Doni]

If that didn't choke me up this morning don't know what would Tess. Ty's first birthday is Monday and despite the fact that we can't have a party during RSV season, we know what a huge milestone this is and I look forward to a day of celebrating what HAS been accomplished. My heart breaks for the struggle Cary's faces but I know God has incredible plans for her precious life...and yours.

[Mandy]

As always you leave me admiring your approach, your honesty, your strength. Here's hoping that the news will be good, that you won't have to deal with those maybes turning into definites.