Dear Morningside Family,
I've been a part of this community from inception and cherish it. You
have touched my life through good and bad - especially the bad. And for
that I'm very grateful. I'm especially grateful beyond words how
everyone who has met Z saw him for who he truly is. His lifestory is
incredible and I thank God for the gift of this incredible child.
I just requested Z be removed from our church's prayer list. He's
been on it for years and I THANK YOU for praying for him faithfully
every Sunday but it's time to let go. One of my blogs (pasted below)
tells all. I invite you to follow my blog at
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.
I've been pleasantly surprised by what I write. Join me.
Peace,
Jeannie
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(posted Monday, July 5, 2010)
Letting go is a hard thing for me. Really hard. Such a control
freak
that I map plans out months in advance. I'm good for spontaneity but
only occasionally. Don't ask me to pick up and go frequently cuz I
won't. It means letting go of control.
I did my scariest letting go yesterday. I let go of Z.
Z is my baby who from conception has had me on edge. At the mid-term
sonogram, the technician and radiologist advised that I see my OB
quickly to get an amniocentisis. They noticed that there could be
complications - indications of ventricular megaly (this was the start of
medical school for me - I have learned so many medical terms because of
Z). This is a condition where the ventricles, the holes in the
middle of the brain are too big and could mean there's Down Syndrome.
What the F#*%?!?! Just 18 months earlier, I had an uncomplicated birth.
My heart was pounding. My OB, Dr. Ledyard really didn't want me to
have an amnio but he let us since the idea was planted in our head. The
really, really crazy part was that they told us we'd have to make a
decision about whether or not we would continue our pregnancy before we
got the results. You see, NY state law permits medical abortions until
24 weeks without a court order. I was already 20 weeks pregnant when I
was told to get a sonogram. Results take 2 weeks to get back. Do the
math. It was too tight a timeframe to have discussions after we got the
result and so we had to start talking about it. I learned so much
about my family that I'd rather have not known - some said if you have
any questions about this baby, terminate - if not for any other reason,
one very good reason - it wouldn't be fair to Kobe. That one sticks with
me. I'm sure there were other arguments and rationales but when you
bring up any one of my kids, I HAVE to listen and be open to the idea.
Well, the drama was all for naught since the amnio came back clean.
Well, this was not to be an easy pregnancy. He was breech. I already
had one c-section and wasn't looking forward to another one. There was
too little fluid to attempt an inversion - try to turn the baby using
hands in the doctor's office. I tried eastern medicine where they burn
tiny blocks of herbs on your pinky toes every day for 7 days - that hurt
like hell but I was doing anything I could to avoid another c-section.
We scheduled a c-section for May 16, doctor thought 38 weeks was enough
and I was ready to give birth. Nope, Z had to come into this world
on May 14. The c-section was scary. It took the doctor 45 minutes to
get to him and 1 hour to close me up. (I had a complicated c-section
recovery from Kobe where the doctor had to "rip" open the wound to let
an infection heal. For 6 weeks, a nurse visited to remove and pack
bandages in the wound so that it healed from the inside out. That hurt.)
Dr. Fiss came to me afterwards and told me that having another baby
could put mine and the baby's life in danger. Well, that made me feel
better about the decision we had already made to not have anymore
children. 2 was more than enough.
So you see, Z's story didn't have an easy beginning and it went
downhill quickly. He was born with a HUGE head - the pediatrician said
that if you laid 10 babies down in a row according to head size, Z
was number 12. But everything seemed fine so all we could do was wait
and see. It was at his 4 month check up, Dr. Clemens was alarmed at the
rate of head growth that he sent us to a neurosurgeon. That led us to a
neurologist. Dr. Clemens heard a heart murmur. Yeah, it's probably
nothing but go get an echo and the works from the pulmonologist. His
skin seems irritated - go see a dermatologist. It was one thing after
another. Dr. Clemens knew this was a special child and he wasn't taking
any chances. By the time Z was 12 months old, he had 13 doctors I
was keeping track of and making appointments with.
My mother noticed from early on that Z only looked to his right side
and told me I should check it out. I waved it off - already overwhelmed
with everything. I learned that listening to her was more imperative
than ever. Dr. Clemens (our medical savior by now) heard this concern
when I casually bought it up and did notice that Z was not developing
at a "normal" rate by the time he ws 9 months old and sent him to be
evaluated through the Early Interventions program. Well, that was a
floodgate that opened - it was recommended that he receive physical
therapy, occupational therapy, speech therapy and special education. At
13 months old, our lives revolved around his schedule of services - 9
sessions a week. For 2 years, our lives revolved around his therapy
sessions.
From Early Intervention, he went through the Committee on Pre-School
Special Education process of the Department of Education where he was
placed in a special education pre-school. It broke my heart to put my 3
year old on a school bus and hand him over to strangers. Those fears
were for naught as the staff of the Harry H Gordan School were
uh.maz.ing!
Two years later, it was decision time again. To mainstream or stay in
special education?!?!? We were torn - teachers, therapists, us as
parents. Z was doing great but where do you place this child? We
needed to make a decision in March for where he was going to be in
September. This was hard. Especially hard because for a 5 year old, 6
months can make a HUGE difference. No crystal ball to see if Z was
ready to be mainstreamed but we took the risk. Enrolling him at Central
Park East II Elementary School in East Harlem was the BEST educational
decision we could've made for him. He's thriving. No questions about
his academic and social development. He continues to receive speech and
occupational therapy. The 2 last remaining pieces of his
Individualized Educational Plan. And these services continue to be
reduced over time as he improves in these areas.
There's so much more to Z's story.
God inspired me (Damian was cool with me choosing the name, just didn't
see the God part of it, but that's another story to come) to give him
the name he was given. For Z- means "God with you." And if
anyone in our family needed God, it was him. God has been with him all
along. God was with us all along. His Korean name, given to him by my
father, WonKyu means "high foundation." I'm scared to think about this.
This is the child who wrote a letter of advice to President Obama
completely on his own because he was bored. Told our president what he
thinks he should do. (You can find it in one of my status updates.
BTW, he got a letter back from the president. Yippee!!) SMH. Almost
scared to think what he will do with his life.
Letting go....
Z's biggest challenge has been his speech. I never knew how
important speech was to a child's development. We've invested a LOT of
time, energy and money into his speech. Even paid out of pocket for an
outside speech therapist for extra sessions to supplement what he was
already receiving in school for free through the Department of
Education. I've spent hours with him going through drills for years -
using worksheets provided by Gina, Debbie and Maria, his amazing speech
therapists. He's spent hours sitting through sessions. It's been hard
work but for whatever reason, even though he had mastered all the
mechanics, he wasn't executing and applying the lessons he had learned.
I knew it was only going to happen when he cared enough. In this I
didn't worry too much, just got frustrated when I couldn't understand
him when I knew he knew how to speak clearly. This past week, I noticed
that he was much clearer all of the sudden. My heart was relieved to
see that all the hard work was finally paying off. I didn't figure it
out why until I let go yesterday. It was his new setting. He just
started another summer of camp and was thrown in with a bunch of new
kids and teachers. Don't kow what's happening there - maybe he's
working on a new girlfriend or trying to impress the boy next to him or
is just simply tired of not being understood all the time - really don't
care. Just happy to know that he cares enough about being understood
ALL of the time (not just when he's trying to get something out of us),
that's his speech is clearing up. He's finally articulating all of the
time, not just some of the time.
Through all this, Z has been on our church's prayer list. I've been
tempted to let his name be dropped and was waiting for our church to
move him off the list. I mean, so many need prayer and isn't there a
quota of how much prayer one should get? His name has appeared on our
church's prayer list every week for years. Each week, whether we were
there or not, I knew his name was being lifted to God and the world.
His name was heard. A whole community was being reminded to keep him in
their thoughts and prayers.
Yesterday, I let go of that.
I asked God and my church community for forgiveness for selfishly
leaving Z's name on the prayer list this long. I cried, sobbing
because I could finally let go of Z and completely place him in God's
hand. But you know what was crazy? God was there all along. I thought
I was letting go of Z into God's hand. How ridiculous. I was
letting go of my own fears and anxieties, my own issues surrounding
Z. I thought I was doing the work, but it was actually God who was
doing it all along. Sweet relief. Letting go was sweet.
Letting go takes risk because it's so scary, especially when it's
something you've held onto so long.
Letting go takes hope because none of us knows what the future holds
Letting go takes faith because... just because
Letting go brings hope because the future then opens itself up
My heart is lightened today and the future looks so much brighter. What
will I let go of next? What will you let go of?
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