with a little help from my friends

thank you ladies for your comments and support. made me feel better. i whispered to bald carys today as we did her new exercises that:

baby, people you don't even know think you're a dandy. and just when i was getting upset with women, our friends made me proud to be one.

and she smiled and drooled in what could only be agreement. thank you, cyber babes. really.

@@@@ this is an exploratory post..please be patient..these may not be final feelings!@@@

as i talk with other mums with special needs children, i find that it is becoming very clear to me WHAT saddens me about having a special needs child. i should probably check this out with my parents first, to see if they felt this way about epilepsy, but i don't want to wake them up. they've had enough woken up in the middle of the night phone calls these past 12 months.

when you are told that your child has special needs, your heart plummets. certainly, some of it is oh, how will we take vacations, how will our family's quality of life be affected, how will we make the appointments, the costs, but really, it comes down to this:

as a parent, you want your child to have an easy and great life. life is tough enough, and it becomes increasingly difficult to have the best life possible when society is not equipped for you, when you are a minority. kids are self conscious...don't want to stand out...what about the child who DOES stand out??the stares and reactions make them feel self conscious, incomplete, embarrassed.

haven't we seen how long it took ethnic and cultural minorities to be equalised?

i was lucky. my disabilities were only "sometimes" and for the most part, easy to smooth over. except after you've seen me have a seizure, apparently the image lasts with you for a while.

but i look at carys and the possible CP sentence looming over her. at all the triplets with their enhanced likelihood of underdeveloped brains and coordination, sebastian with his speaking troubles and hearing issues, etc. and i am saddened. because i wanted the best possible life for them, and these challenges aren't the best way to start.

my toughest thing has had to be facing a group of people after having a seizure infront of them. not fun, but all part of my life. i just wanted an easier one for my babies.

you wonder how someone will not be able to look at your child and agree with you when you say,

isn't she adorable?

i have pictures of carys that bring tears to my eyes. and i am not a crying type. her bunched up little mouth tilting upwards into a smile, her watery eyes shining with interest and excitement. can other people see that? will they see beyond a limp? a wheelchair? a ??????

I DONT CARE IF MY CHILDREN HAVE DISABILITIES, WALK IN A WAY THAT LOOKS "DIFFERENT", HAVE SLURRED OR UNCERTAIN SPEECH, OR ARE NOT OVERLY INTELLIGENT. BUT I AM SORRY THAT OTHERS OUT THERE DO.

sorry, this is disjointed, and unfinished but sela is BELLOWING. i will improve this soon.

Comments

[Lauren]

I know from a writer's perspective you may not like your words but the honesty in the post is so very touching that I don't think you should change a thing.

[Lauren]

and, if I could manage it, I would fly all the way around the world just to give you a hug and marvel at the beauty that is Carys.

[Liz]

I think your words were wonderful. We all want our children to go through life with as few hurdles as possible and when your child is "different" in any way, that increases the size and frequency of those hurdles. What your clan have going for them (and many kids do not) is a solid, stable foundation at home, and parents who cherish them, and are in tune to some of the additional issues they may have to deal with. That will give them the tools to cope with whatever life hands them, as unfair as that is. As far as I'm concerned that is a prety fabulous gift to be given :)

[Gina]

I've never posted a comment to you before. I delivered my trips at 26w2d 3+ yrs ago and I followed your story on TC. I (along with others) prayed so hard you would come home with 3 beautiful children. It's touching to see you go through this journey that I went through 2 years ago. My Lauren has CP and I know all the thoughts that are going around in your head. You are in such a hard place right now. You just don't know what her prognosis is and you want someone to tell you how it's going to be. It gets easier, the answers will come.

I'm just rambling but I just had to post

[Janis]

Tess,

This post has touched me on so many levels.

As the 2 year mark of Marrissa's death approaches, I am raging inside. All she ever wanted was to be "normal." Once her illness became apparent, people she thought were friends, left her. Only they weren't content with that, they had to tease her, torture her, go out of their way to be cruel to her. Kids can be so damn vicious. I wonder how they feel now? Do they even realize their culpability in her death?

As I read about your worries for your babes, I pray that they will never know the cruelness of others. Then I read about adults saying horrid things to you and it hits me... This is why some kids are so mean. they learn it. Stupid cruel people begat stupid cruel people.

I don't know how to shield our kids from them. But I do know that if we create homes that are safe havens, full of love, understanding and wisdom, our kids, no matter their difficulties are already several ahead of those raised by the cruel stupid folks.

I know I am rambling, not making much sense, but I want you to know that all of you are in my thoughts, in my prayers, and that I am hoping for the best for you all.

Much love... xoxo

[Brandy]

Tess,
I wish I knew what to say to make you feel better. But I do want to say that you need to tell everyone how you feel. Blane having severe hearing loss and hearing aids (and the oxygen and apnea monitor) makes him stand out also. I wonder if anyone in public schools will want to be his friend, if everyone will make fun of him, etc... But no one has to say you knew this might happen or anything like that. In case those people do not know, God made everyone the way He wanted them made, WE were hand picked to be the parents of these special needs children for a reason. And only God knows that reason.
Please continue with your post. I would love to read everything you have to say. And no, I can not see Carys in that wheelchair and I am praying that does not happen.
Big Hugs!!!

[mandie]

may the Lord bless you and your children! may He bring you peace and comfort and the strength to deal with whatever the outcome may be regarding the health and abilities of your children. He is a mighty and CAPABLE God.

[Julie]

I understand what you mean.... ABout how you don't want people to think badly of your children... It comes from being a fiercely protective Mom, just as it should be... Though my son Josh and daughter Amanda aren't really considered special needs children, they both have delayed gross motor skills. The doctor thinks they have some slight muscle disease that causes the muscles to be weak... Josh didn't walk until 18 months, and Amanda is now 17 months and is not walking yet.... But I get the "They're not walking YET!" from people, and it hurts... Because, as you said, you want other people to see your kids the way you do, with love for who they are, and not for what they are not.

Give your cuties a hug from me, and take one yourself!!!

Hugs
Julie

[sara]

I started to post something yesterday, and it kept coming out angry.

Your babies are beautiful and wonderful and lucky to be here. You're wonderful and lucky to have them, as lucky as they are to have you. Whatever difficulties they face, you'll see them through it.

To say "You knew what you were getting into" was asinine.

They're used to babies that come into the world in an easier and more carefree fashion, no compromises, no prematurity. And they don't realize what strong little babes your three are- the fight they put up in the NICU, and the fight that they'll put up against whatever limitations they may have.

It all makes them stronger, not weaker.

And those bright little eyes we all see in the pictures you take? There's an active and inquisitive brain behind each of their faces that's ready to tackle whatever they face, and a wonderful mom to face it alongside them.

[Babe]

I don't know if this will make you feel better, but I have a history of clinical depression, and yeah, that made my life harder than it would otherwise be. I almost flunked out of college, etc. But I also feel that my struggles have given me something that I wouldn't trade for anything--more empathy for others, more tolerance for others, and a deeper understanding of all things emotional. The people I know who suffer from various other disabilities, including cerebral palsy, dyslexia, etc.--it's only made them better, cooler, people. So while you may be sad that your kids may have a harder time than others, don't assume that overall, that will have a deeply negative impact on the quality of their lives. It may just make them better!

[Tammy]

As I sit here in my office, mascara tears trailing down my face, I am reminded why I love you so much. The honesty in your words touches my heart like only few other things ever have or do. Whether the future burdens of your babes be heavy or light - they will one day realize just how blessed they are to have been born from your womb.

And once again I'm sitting here thinking, "When I grow up, I want to be just like Tess." :)

THANK YOU for being Tess.

[Blake aka Dad aka Dad-Dad]

Tess, thanks for not waking mom and/or me! I always thought you kids were special. I never really considered special needs because you all seemed so normal to me.

Love, Dad

[Ingrid]

Tess - and others with special needs kids - I'm sorry you have to go through this. My now-13yo was diagnosed with grave neuro problems when he was small. Tess, I could have written your post way back then. It's a terrible to look at your heart-stoppingly dear child and think that something you can't control will makes things harder for that child, will perhaps cause him to see him or herself as something less than we do.

None of us would ever ever choose a disability for our child, and I don't want to minimize the pain or the possibility of a bad outcome, but it doesn't have to be a tragedy. (I can finally say this; I was holding my breathe until about a year ago)

What we've found is, it doesn't have to make their lives harder over the long run; in retrospect, I realize that the work my son put in as a small child paid off not only in catching him up with his peers, but in teaching him some early life lessons that made his life easier in the long run. Things that make him a happy, out-going, hard-working kid at an age when other kids are confused and surly.

Email me if you like. You and your kiddos are in my thoughts.

[Auntie Pammie]

Tess, I think you know how I feel about you and your children.... considering Carys overcame a 10% survival rate and has made it this far, shows you how strong and resilient she is. NO matter what diagnosis is given to her, she is a tiny little hero to me ( as are all of your children!!). You had mentioned that you were viewed as being "different" by people for an after- affect of a brain injury. You are one of the most sucessfull strong women I know, I constantly brag about you to whomever will listen, and I admire you. Just look at the accomplishments you have made in your life ( without ANY handouts or special treatment), now think of little Carys and close your eyes and see how far she is going to go. I say watch out world, as she is on her way.
a very loving and un-biased Auntie

[Rhonda]

It is only with the heart that one can see rightly.
What is essential is invisible to the eye.
Antoine de St. Exupéry
from "The Little Prince"

People who see with their hearts will have no trouble seeing past the accessories that come with a disability. And there are more of those people in the world than you know.

[Tertia]

oh my friend, i hear exactly what you are saying in your post. i wish the world was a more tolerant loving place.

i suppose all we can do is love them so much that the outside world hurts as little as possible.

much love to you, i hope you are looking after yourself. you've been brave for so long, please reach out if you need a shoulder. you are so good at being there for other people. reach out if you need to have a good cry.

love you millions

[Boulder]

You know, some people just don't get IT. And frankly, those people won't have a place in your live or the lives of your children.

You raise them up in love and the potential for unlimited success & that is the greatest headstart any child could ask for. Through your own illness you've learned to cope with ignorance. That will go far in helping your children to conquer the same, if the need arises.

I'm so sorry that the world can feel full of intolerance & prejudice. And at a time when we all need to love a lot more & embrace what we do have. I'm with Tertia, you reach out if you need to, we'll be here.

xoxo

[Doni]

I hear you friend. Tess - I don't know about you but this year changed me sooo much! Because we were adopting our babies, I was sooooo afraid of a special needs situation. I had the same dream everyone else does. Perfect and healthy and happy children. That isn't wrong..that is normal. I was angry that people treated me like those that are infertile have a responsiblity towards children that are harder to adopt. It was not fair to live under that judgement. Why wasn't I allowed the same dreams as a fertile couple?

Then I met my son. I hardly need to say anything else. Over the months people have asked me why I still went forward and adopted a 25 weeker with a bilateral bleed. My answer has always been the same. He is God's gift to me. I knew that the moment I saw him. I know that Ty has a 60% chance of cerebal palsy because of his PVL. It doesn't matter. No I don't want my baby to suffer but I believe so strongly that IF he does, it will have great purpose in his life. As his mommy, I have to be strong enough to teach him how to live with a disability. I won't lie and say that it doesn't scare me but it doesn't frighten me anywhere near the way it would before I met my child. I am thankful to know love on such a deeper level. I am grateful that God chose to reveal His beauty to us on a greater level than some are ever PRIVELEDGED to see. Like you, I am having the time of my life. It has been and will be hard but the blessings are plentiful. I feel a sense of freedom from the fear I use to carry. I now understand what love covers and it was a lesson that has and will serve me well (and my children). Love you.