milestones + drama = childhood

if there's one thing that seizures and milestones have in common, its drama. at some point, something does not go as planned.

about 3 or 4 years ago,  i found Yossi standing up in his crib. we promptly lowered the mattress to the last level and he could no longer reach to pull himself up. since that time he had been sick and weak often and was in no shape to keep on trying.

its now been SIX MONTHS* since our last hospital visit (thank G-d!) Yossi has been getting stronger and stronger and he has begun standing on a daily basis. it began innocently enough, i found yossi standing in his bed, and he was so proud of himself that he took pleasure in repeating it at every opportunity.

I must say that i encouraged it. Im so happy that he is finally making trouble and making a mess And i thought it so clever of him every time he reached over the rails, pulling books off the shelf and throwing them to the ground! how i waited for this day!

Then came the moment that i'd forgotten could happen.  a 7 year old is a little tall for a crib but who remembered that? i heard yossi calling and i came running just in time to see him topple out of the crib. what a fright we all had and i was completely shocked given his history that he did not break any bones.

needless to say we disassembled the crib that very same day and yossi's travel tent bed took up permanent residence in his room.



* this post was written in august 2015 when it took place.  now a year has passed since that incident and its almost 2 years since we started the process of applying for a special bed. in just a few weeks the new adaptive bed will take its place in yossi's room -our little boy is growing up and getting is very own grown up bed!

L'chaim - To Life

I've stopped waiting for life to calm down.  i finally realized that life will always be hectic and we'll always be busy with something.  its just a matter of what you are busy with.

  im happy that this year was not spent in the hospital. to be sure we had plenty of appointments but its a different life. its calmer, a little more predictable with no great emergencies. I'm so grateful  for Yossi's health!

 his seizures are still here, almost on a daily basis (so he mouths alot) but with the right combination of medication the number of seizures stayed at a  steady low. this allowed yossi to grow and develop.

he grew 5 inches in the last year and gained 5+ lbs. he is saying new things and learning new skills. he is walking farther and steadier and constantly makes us laugh with his antics.

this summer was very rough- the extreme heat played with his seizures. fortunately his seizures are a little more predictable and we were able to control them by tweaking his daily meds.  we did have one incident where they piled up suddenly one after the other and fortunately yossi recovered the next day.

 its been wonderful spending family time on leisure trips and exploration this summer rather than making frantic trips to the hospital with hearts racing and nerves shot. its amazing how each tiny reduction in medication had us holding our breather waiting for it go badly. now i can look back at how much we've been able to reduce his medications.

 yossi was as happy as ever to go back to school- i can hardly believe that my baby is in 4th grade!  as the weather turns cool ive got to go buy vests and undershirts for the first time ever!- yossi's body temperature has finally regulated now that he's been stable for a while. his immune system is still pretty bad its taking time but he is slowly recovering.  we'll always have seizures and we'll always have our doctors in our family but im very fortunate that we've reached this day.

Thank you Hashem for HEALTH!! may this new year bring continued health and healing, love, together, growth and prosperity!
Kesiva Vachasima Tovah

words from the heart

i was just thinking about you as i am sitting here at work.
i miss just sitting with you and being totally comfortable.
we can do everything in the world
we can do nothing and just relax together.
you are so beautiful and do not realize how wonderful you are
everything you do is wonderful

i know it seems to be never-ending
we are in a rut and want to have things easier
all I can tell you is that things will get better
i will never give up on us
i love you and will always take care of you

-DOV

(My sweet husband sent me this note one day last week  while he was at work)

life

dizzy, busy, no time to think
6 months  gone by before you can blink

i try to think of what i've done
but when i search for news, i have none

nothing to show, here i stay
why did i bother with that hard work anyway?

weeks of hunting for houses turned up with nothing
bills and forms cast aside in the rushing

im broken please fix me
im falling apart

where to turn?
i dont know where to start.

do dreams ever come true?
i know they do because i married you.

can i wish for something more?
yes! yossi's  healthier than before

because he is stable i am free
to chase a new reality

its not always going my way
but we're making steps every day

Wall of Support

For Amalia and Miri with love:

When there is nothing left to say

You hold my hand

When there is nothing you can do

You understand

That your presence holds me strong

For what im going through

I’d choose 100 other paths

If I were able to

When you are at my side

I can cross the great divide

Away from the darkness that hides

The pain of this life

Im waiting for joy to be

But as yet I don’t see

Why this was meant for me

One day I’ll understand the reason why

But for now waves of heartache crashing by

I know you understand my pain

Its both different, And the same

Is there really something to gain?

 Hear me G-d:  this needless tragedy

I’d never wish it on my harshest enemy

And when the fear and anger subside within me

I’ll make it into an opportunity

TRUTH

My brother Naftali got  married a few nights ago.  notice how i said 'my brother'. not my step-brother or half-brother or adopted brother. we always introduce each other that way- simply as brother and sister. thats because there are no distinctions or differentiation in our blended family. there is only love and respect here.  love, for the brother i've known since i was old enough to remember anything. respect, for the commitment of marriage that my father and his mother made to each other. under the chuppah they joined our families together with unconditional love and acceptance and i have been blessed to be part of a warm welcoming family ever since. Now that my brother has made those same promises, i'm no longer the lone female in our immediate family circle. So will you please take a HALF STEP sideways and make way for  my brother and his bride :)

Celebrating Life

Tall in stature, soft in nature
supportive witty and kind
always easygoing and positive
with a twinkle in your piercing blue eyes

intense love for your family
proud of your great-grandson Yossi
fortunate to have met you, that's for sure
now my life's richer than before

As we live your life lessons,
we know you're watching us from heaven,
may your memory,
be for a blessing

these are my remarks from the funeral of my beloved zaidy binyomin michoel ben shmuel sholom.

 

in my father's words:
23 years ago i met my father for the first time. the joy was unmeasurable. at the first meeting there was an instant joining of our souls. the longer i knew him the more i realized his excellent qualities.  despite our lifestyle differences, there was never any friction between us.  he and his family made us feel as if we had never been apart.  he will be missed and remembered fondly. may is soul ascend to high places.