RE: Re: Walking the Marathon vs. Running the Race-What's in a Hawaiian Name?

[Guest guest]

" Aubrey's middle name is " Lohelani. " ( " Low-hay-lah-nee " ) Translated from

Hawaiian to English it means " hear Heaven's bidding... " 's is

" Kahalelaukoa " ( " Kah-hah-lay-lah-oo-koh-ah " ) which means

" from the house of the very strong! "

,

I hope that you picked up that 's middle name was given to her

THREE YEARS before Aubrey was even born.

BELIEVE!

Desi

ps It is the tradition here for Grandmother with Hawaiian blood to choose their

grandchild's Hawaiian middle name. Fraternal grandmother gave her

Hawaiian name at birth. Same grandmother kept pushing me to terminate my second

pregnancy. Thus, I picked up a Hawaiian dictionary and gave Aubrey her middle

name myself! The great irony is that Fraternal Grandmother gave the

perfect Hawaiian name, don't you think?!?!?!?!

Subject: RE: Re: Walking the Marathon vs. Running the Race-

To:

Date: Monday, July 21, 2008, 7:15 AM

Hi Desi,

I will treasure your post always- incredible words of wisdom, compassion and

faith!! Thank you so much for all of the above- I really needed a reminder of

these things.

Here is to a fresh perspective every day, served with huge portions of joy,

peace and compassion, despite the moment to moment circumstances.

Best,

To: @yahoogrou ps.comFrom: desimckenzie@ yahoo.comDate: Fri, 18 Jul

2008 13:08:48 -0700Subject: Re: Re: Walking the Marathon vs. Running

the Race-

,My daughter Aubrey is 10 (Dstr21, Hearing Impaired, PDDNOS) and I have

felt all that you have written at some time or another, and that what you are

going through is so typical of our journey...I have gone from majorly

" depressed " to absolutely ecstatic more times than I care to count!I have wanted

to " run away " many, many times as a single parent, but what keeps me going is

the fact that my love for Aubrey far surpasses my need to run away, too...and

there is NOTHING like a Mother's love!I know your feeling of being isolated,

even when you are around other families of children with DS when your child has

a dual diagnosis.I empathize especially with being in the community and

sometimes feeling as if you are on the " outside looking in " ...but what hurts the

most is having two brothers who live in the same community and who are

essentially nonexistent by their choice to us, as their wives, girlfriends keep

them away from us probably intentionally-

as they clearly are uncomfortable being around their beautiful niece...Here' s

how Aubrey's 13 year old sibling- and I cope...how we try to " view "

Aubrey-her world, and the world around her...First of all we believe, and keep

reminding ourselves, that Aubrey came here EXACTLY as God intended her to be. It

is up to us, and everyone else in the world around her to help her live God's

plan for her life, and thus ours...We applaud Aubrey for her uniqueness and

celebrate it, no matter how hard it can be...If we focus on our child's

STRENGTHS instead of their weaknesses it helps one cope so much better. The

" glass half-full " instead of " half-empty " premise...As we help them to be " the

BEST they can be " on a daily basis, we can only do the " BEST that WE can do " on

a daily basis as well. And , that HAS TO BE good enough, because that's

all we have to give-is our BEST on that given day.Take it one day at a time, one

HOUR at a time if you have to. I

have been known to take it ONE MINUTE at a time-especially in an IEP

meeting!CELEBRATE and treat yourself when you've made it over the hill for that

minute, hour or day! SIMPLIFY!It' s OK to feel all that you are feeling. Cry

every once in a while if you have to. Remember to take special moments just for

yourself...Remember what YOU like!! I.e. when I can put on make-up and a nice

outfit and actually go out on a date-it is such a huge treat! Reward yourself

often! Sometimes, when it gets really too hard, I play " ostrich " and kind of

stick my head in the sand until I get kicked in the 'okole (butt!) and have to

stand up! It helps, but is not recommended! LOL!!!!! I call it my " mommy

time-out! " Regarding the world around you, until they actually walk your unique

shoes (which they probably never will) they will NEVER get it. And that's OK!

It's THEIR loss, for they NEVER will be able to experience life as " colorfully "

and as intensely as we have-and will

continue to do so! What and I choose to focus on is-i.e. the people in

the world like the beautiful gas station attendant who encourages Aubrey to take

her time to count out the money to pay-no matter how long the line after us is

(!)instead of the " clueless " who stare and stare and stare...(sadly though, we

also don't go out if we know we are not going to have it in us to ignore the

" clueless " on a particular day.) I also praise Aubrey a lot in public LOUDLY

when she does a good job behaving and thus " conforming " -and have been known

from time to time to actually ask someone who is particularly obnoxious-WHY they

find the need to stare and stare- " is it because she's so beautiful (she is!!!)

or because you have no idea how much you are hurting our family right now? " HOLD

YOUR HEAD HIGH, TOO!It's all about perspective, as well...I'll share this life

lesson gifted to me before I go today...Aubrey was about 15 months old...and was

in the hospital

for the 5th time or so...this time because her hypotonia and thus GERD, was so

severe that she only weighed only about 11 pounds as she threw up more than 30

times a day...My husband had just left us several months earlier and was doing

everything in his power to get our special needs daughter taken away from me to

relieve himself of the financial and physical responsibility of his own

daughter...There is nothing like being judged by the world when you are trying

your very best to keep your child alive! My Mom and I had been staying up night

and day feeding Aubrey, but were caught in an endless cycle of feeding and her

throwing up and though exhausted kept on going nonetheless. ..(little did I know

that my Mom was already ravaged with Cancer and would die four months later)...I

walked into the hall of Aubrey's hospital ward to take a break. As I looked into

the glass of a fish tank and saw my disheveled reflection, I allowed myself to

cry for the first

time in a long time...Another mom's face appeared in the glass and asked if I

was OK...a complete stranger who held out her hand to me...she listened to me

with great empathy, and then shared about her son sitting in the stroller

alongside her who appeared to be about 8 years old. He had had a major heart

attack several weeks after birth. Her son would never be able to eat on his own,

never walk, never talk and would never even be able to show any signs that he

recognized his own mother...I thanked her profusely, wiped my eyes and hurriedly

walked back to Aubrey's room possessing a renewed strength and a whole new

perspective- My daughter would eventually walk, maybe not talk well-but sign

well!, and is now a healthy weight! She often " says " (in her lovely " accent " of

course) " I love you Mommy! " (which I have rigorously taught her to say for just

those kind of days!!! Pray for the gifts of perspective and strength, and know

PEACE, because you are

doing your BEST! KNOW that you are certainly never alone! We are all going to

be just fine! We have surely been blessed!Aubrey' s middle name is

" Lohelani. " Translated from Hawaiian to English it means " hear Heaven's

bidding... " 's is " Kahalelaukoa " which means " from the house of the very

strong! " BELIEVE! Malama pono, (take good care!)Desi McKenzieMililani, HiHi

Everyone,> > I am mostly a lurker, but have occasionally posted a

response/comment or query. I am so very grateful for this list serv as it truly

is the only place where I know everyone understands what our children and

families go through on a daily basis.> > I appreciate you listening to me as I

vent for a few minutes. I feel very overwhelmed at the moment by my son 's

needs. My husband works 60-80 hours per week and helps as much as he can when he

is home, but it is not enough. is our only child. Our families are unable

to assist due to age, health issues, distance, etc.

Unfortunately everything feels like a burden as of late.....I feel so ashamed

to even say this, (as I know that my son certainly didn't ask for all of his

challenges) but sometimes I wish I could just run away.> > I have had to learn

to adjust my expectations of 's progress.... .he is making gains, albeit

very gradual. I look forward to when he walks independently( he will be 5 yrs.

old at the end of August) as this has been especially challenging. He will need

eye glasses and his school would like me to transition him to cloth training

pants during the month of August when school is closed. is such a sensory

little guy- haircuts, nail clippings, new foods etc. are a nightmare, so I'm not

quite sure how the eye glasses will work, but will be working with the school

staff on this. CHronic allergies have been a challenge lately, and one 's

ear tubes came out and will have to be replaced, as well as a pair of

orthotics.> > The PDD part of

is no question the hardest- any change (even little ones) are always a

trauma. We are using PECs, sign language, and starting a picture schedule and

have seen some success, but it is often a struggle and the whining can be

difficult to take. is going through a stop/drop/flop phase which can be

scary in a parking lot.> > The journey can also be lonely at times....I've felt

this lately, esp. at our town pool, where I take often (his PT and

orthopedist recommended water therapy as often as possible to strengthen the

musculature to encourage independent walking). Sometimes we'll meet some nice

folks, but many some uninterested/ uncomfortable in interacting with us. It's

hard to be on the outside looking in, sort of like the rest of the world is

going on around us....> > I hold a monthly breakfast for the parents at 's

school (special school for DS) at my home, but he is the only dually diagnosed

child, though some of the children also

have sensory issues. I am happy for these gatherings, but sometimes it is hard

to hear about the other childrens achievements and is no where near them.>

> I realize that I am still grieving over the dual diagnosis (which was almost

2.5 years ago).... I really thought I had worked through this, but obviously

not.> How does one come to a place of true acceptance and peace? I love my son

very much and he deserves my best. > > I hope to be out of this valley and back

to the top of the summit soon.> > My very best to all of the families " fighting

the good fight " for our children. -, Mom to , DS/PDD-NOS, almost 5

yrs. old