Our story – update on Kalia

March 2012. I’m sitting on the children hospital chair crying… no actually, I’m sobbing. My husband’s arms are around me. He’s crying, too.

Our ENT specialist has just came and informed us that our 18-month-old daughter, Kalia, has moderate hearing loss that is progressive and eventually she will be profoundly deaf.

Some people ask, “Why me?” I’m asking “Why her? What good could possibly come of this?”  – that some people was me.

I have the experience of her life flashing before my eyes, or some possible version of her future life. It seems like many of the dreams that I have for my child just got erased.

All this time, she’s never heard a song that I’ve sung. She’s never heard a story that I’ve read. She’s never heard the words, “I love you.” All this time, she’s been living in silent and I never knew or do anything about it. I feel like a failure, what a bad mother!!

I open my eyes. I see my daughter’s face peering up from my husband’s side. She’s watching us, her parents cry. She sees they are distraught. Kalia’s face is full of concern, as if to ask, “What’s wrong?” I smile at the absurdity of the only possible answer. “Well, you can’t hear this whole time and we just found out!”

Then, as she just keep on playing with her sister, following her every steps of the way while keep on glancing at us, I saw her laughing, giggling, like nothing had happens, then I try to imagine Kalia’s perspective: a safe, happy life, surrounded by people who love her. I realize that for Kalia, nothing is wrong. Nothing has changed. Her dreams weren’t lost. She may not have even liked the dreams I had for her.

We make the choice to adopt Kalia’s perspective:

“There’s nothing wrong. It’s always been this way. Mom and Dad, it’s just time for you to learn something new.” ~Kalia

We learn American Sign Language. All four of us. We also opted for Cochlear implants in hoping for some type of technology help.

One years later, August 21, 2013. I sit in Kalia speech and pathology therapist’s office with my now three-year-old Kalia. There is some concerns on her lack of progress in therapy and we are hearing some opinion on why. “Kalia showing some sign on Autism and/or ADHD.”

The tears and mourning are the same, maybe slightly worse. I haven’t had a chance to let this whole having a deaf child settle in, now this? What is Autism, isn’t that only on boys? What is ADHD, what should we do now? Is God just really playing a cruel joke on us? Haven’t she go through enough?

I imagine after Cochlear implants, all will be well…. She will start listening,  she will progress in therapy, she will go to school, we’re all advancing on our sign language ability and all will be okay.

This new life of more evaluation and therapy and group sessions ahead of us almost seems too much. Then, I remember the gift Kalia gave us one years earlier, and I imagine the same words in a slightly different voice:

“There’s nothing wrong. It’s always been this way. Mom and Dad, it’s just time for you to learn something new.” ~Kalia

Ps. after few observations and test, Kalia does not have Autism nor ADHD. We have switch speech therapist since then.

Kalia and Mommy

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Life is…

Be kinds to others for everybody is fighting some kind of battle…

Taken from Yahoo Images

 We probably heard that once or few times in our lifetime. I am no exception and not to the saying either.

This year has been interesting to say the least. It starts off very good. Everything seems to start falls into places and I’m happy.

Comes March.. late march is when we heard about Kalia hearing problem. We learned that our beautiful baby girl is hard –hearing.

At that time, I don’t ever recall hearing more devastating news in my life.

I was so overwhelm with grief and guilt – for whatever reason. It wasn’t a good time.

 April came then things are slowly getting better again, both of my parents are here! I’m so happy I get to be a child again.

I love waking up to the sound of my parents talking about stuff over their breakfast.

It’s such a fond childhood memory where I wake up to see my dad with the newspaper and his cup of coffee on the table

And my mom sitting next to him while putting on make-up commenting on the news…

It’s comforting…

 Then June came, my dad have to leaves. He needs to go back to Indonesia to tidy up some business deal.

We made plan of him returning back in the fall so I can shows him beautiful CO during the fall season    

.. and its Tyra’s birthday as well.

We have so much plan….

 Then July came.. exactly one month after I say good bye to him at the airport, I have to say good bye to him again,..

This time forever…

God decided that it’s time for my dad to come back home for good. Leaving us here grieving, wondering why…

 Now we’re in October.. how time flew…

I survive the first holiday without my dad.. another one is around the corner..

 Leaves are changing, air is crispier. I wish my dad can see how beautiful it is here now..

I started remembering the plan we made…   promises I made to him.. 

 Life is cruel…

 Many – many times I wish I go back to my childhood.. When the life is so care free.

Playing and playing and playing with my friends…

 Life is cruel..

Then I remember something… a saying from Hadist

I said to Allah, I hate life.

Allah replied, who said love life. Love me and life will be beautiful.

A stroll down memory lane…

Have you ever taken back into your past or childhood by a smell, taste, songs or picture? This past weekend, all of that happening to me.

 I just open a bottle of liquid soap that my sister got me from Indonesia. The scent just automatically take me back on the day I still living there, taking a shower at my bathroom in Indonesia.

As I was cleaning my little cabinet where I hold my little perfume collection, a bottle of Este lauder perfume – beautiful fell off and as I pick it up, I spray it little bit on my wrist. It was my mom’s perfume when I was growing up. The scent take me back in time where I spent time in her arms and how I can smells that on her ….

 And here’s the finale:

 One of my good friends told me that The Original House of Pancake has this Dutch Pancake and how I should try it out. So we did, the family went for a lunch there and I order the baby Dutch pancake. OMG, just the first bite, I almost burst into tears; it’s just like how my grandma used to made for me!! As hungry as I was that time, I couldn’t eat a whole lot because I was so overwhelmed with emotions.  I’ll definitely come back!

 I find comfort on things like that… certain songs that my parents used to sing to me can bring me tears and smile at the same time. For example, Andy Williams – Speak Softly love, have you ever listened to it? It’s beautiful love songs that my parents loves to sing together…  if you haven’t listen here.

 On a side note, one night, Kalia was so fussy and refuse to sleeps. I can’t remember what I was thinking, but I do have my dad old shirt still hanging on the closet, so I just kinda wrapped that around Kalia and just within minutes she drifted to sleeps…. That night I spray a bit of my mom’s perfume on the pillow.. and play Andy William songs till I drifted to sleeps…

My story of full moon….

Thursday and Friday last week we all are privilege to have a view of blue moon. I thought it was cool that blue moon appear at the same time for Neil Armstrong memorial. Just as his family requested, to pay my respect, I did look at the moon and wink.

 My husband took us drive around the city that night to enjoy the beautiful night and the view of the moon. The night was gorgeous. I don’t want to spoil the night by feeling sad. I did cry silently in the car remembering how much my dad loves full moon. Back home in Indonesia, we are blessed with a huge yard, so during full moon my dad and my mom will sit on the yard, with the lawn lights off just enjoying the moonlight and talk. Didn’t I tell you they were hopeless romantic? That memory brought smile and tears at the same time.

 Wanna know something weird, I swear as I keep on looking at the moon, it seems like my dad face came up and smile at me. I feel his warmth, his love and his “message” that all will be okay.

 Maybe I just miss him so much that I started interpreting things around me all associate with him… or maybe I’m losing it…  it didn’t matter, I remember looking at, smile, tell him how much I miss him and I said a prayer for him. That night for the 1st time in over months I sleep well….

Beautiful full moon above Denver. My dad is looking down smiling on us.. 🙂

Sharing thoughts and struggles

Here I am reaching out….

The emptiness of losing Ayah (my dad) cannot be filled. People say it gets better and to just be strong but right now that is the last thing you want to have to do.

I do not sleep anymore either. I wake up from horrible nightmares and then realize I am still in the biggest nightmare of all. The memories keeps on flicker through my mind and then you feel the sharp pain because you do not get any more memories.

I have not slept in months I get maybe 2 hours a night. Dr prescribes some meds but it makes it hard to wake so if I do take them I am sluggish and if I do not then I am sleep deprived. It is all so messed up now. 

I have to stay numb to work otherwise I just start to cry. I hate having fun because life isn’t really the same. Normal doesn’t exist anymore. I loved my dad and the hardest thing was realizing that he’s gone. I feel like the one person, the one man that loves and protect me unconditionally has gone and leave me. That’s why I’m so fearful of everything now…

Now I cannot call him because he won’t pick up the phone. Acha have no dad, she won’t have him to walk her down the aisle…and my Bunda is all alone. Remember watching the funeral from skype and it just sucks that I can’t be there to say my final good bye… that, and all the life changes are painful and a constant reminder to the nightmare. I feel like a walking ghost.  I am sad,  I am angry,   I am lost,

It all just sucks.

Almost everything brings me no joy. ( it is all kind of weird but there are so many things that remind me of him that I just cannot do anymore) what worse is, no one seems to understand.. and life goes on..  I am trying for Tyra and Kalia, but seems like I’m going backward because nothing helps….

Should I stop grieving?

It’s not even a month yet, the wound still feel fresh, and it didn’t take much to takes me back to the painful realization that my dad is gone.

Cooking, looking at the green pan that he loves can bring tears to my eyes… seeing a jar of decaf coffee that he likes so much still sitting on the pantry is enough to break me down…

Days and nights come and go and life goes on, the world seems to be spinning still… although I feel so crushed and dead inside.

Nighttime is the hardest, when people around you sleeping and you just lay there with your own thoughts…  thinking, feeling the hurt and anger again… , wondering why. If everything happens for a reason, this is one of the occasions I wish God would’ve told me why…

God how I miss him so….

Then little voice talk to me, my Tyra told me last night… “Mommy, I don’t want to grow up. “ “but why?” “Well, if I grow up, then you and Daddy will die and I don’t want that, I will miss you so much and I don’t want to be sad all the time like you.”

I have a mixed feeling listening to that. I have been trying to hide my grief from my children. I cry on the way to work, on the way home from work, in the shower.. but somehow she must’ve seen right through me.

Should I stop grieving? Honestly right now I don’t know how or if I can stop…

Then I remember “my dad’s voice” that comes to me in a dream one night….  That tells me to stop crying and to go on with my life, how he’s still around… 

For my daughters sake and my family, I will try…  I will try to grief in different way…

God help me….

My dad June 2012. Fond Du Lac, WI

My dad

My dad (Ayah) pass away unexpended on Tuesday morning June 17th, 2012. He should not have died, he just text my mom few hrs. earlier, talking about the Ramadan preparation, taking my sister to work and how he’ll promise to pick my mom up from the airport on August 5th. Everything went so fast that night it seems blurry to me. I remember getting the news around 10:30pm, family and frantically trying to get hold of anybody back home.. then finally hear the truth after talking to my crying sister. I remember the pain, so unbearable, it actually physically hurt. I remember how my mom keeps on fainted the whole night… he should not have died… there are many plans left….

Here I am writing this memorial for my dad’s memory book and it shouldn’t be that way.  My dad should not have died on Tuesday morning July 17th 2012. He was 65 years old and although he’s been complaining a minor chest pain lately, he’s fine. Then this, he died of a heart attack… leaving us here.

Losing my Father is one of the most difficult things I have gone through.  As I am writing this today, I realize how fortunate I was to have him as my Father.  There are not words to express his influence in my life. Ayah is (was) a great dad and a loving husband. He is also a wonderful grandfather. There are so many wonderful stories I could tell you, but there won’t be enough pages in this books… wonderful memories he left us with… and that memory keep him alive inside me, my mom, my sister and my two little girls, and among all people that loves him just as much. As Tyra often remind me, “grandpa will always be here with us” as he point to her chest.

I learned from him the value of education and hard work. One main lesson he gave me is that how as a woman, I should have skills, I should have a degree, a career, so I don’t depend on men and therefore no man will ever took me for granted and valued me. I am who I am today is because of my parents, because of my dad… he is no saint by any means, he’s human who made mistake and learned from them, but now I know he did the best he could with what he had. In many ways he succeeded better than most.

Family, relative and friends have said to me over and over again, how my dad was a great man, loving, kind and generous. Most of them remember how much he loves his family, how much he loves my mom and us his girls. He passionate about the world and history, he loves to play the piano or organ and sings, he loves to dance, him and my mom took samba, cha cha and salsa lesson together and enjoy it. Recently he enjoys cooking and I’m fortunate that I got to taste that! He is also very passionate about God, about Allah and never stop teaching me small little pray to get me through the day and difficult time…

He always reminds me to trust God with His plan. Remind me to achieve more and yet to stay humble, he assures me that all will be okay at the end. Now here I am, still filled with sadness, grief, and little anger. I need to remember his words, his advises, and most of us trust God that all will be okay.

There’s a saying in Indonesia rough translation is: “how a person live their life will be reflected when he die.” Hundreds have come and pay their respect, many cries with my family, some even wish is should’ve been them instead of him…  my sister told me that till this day we have not spend one cents on his funeral or memorial services. Everything has somehow been provided for us by relatives and family friends. From the cemetery plot, memorial service expenses, food expense…  all has been taking care of.. Everybody loves my dad. My Dad loved us, worked hard for many years for us, was liked by many people, and loved God.

 My dad passing was very quickly – just what he always wanted, no pain, no suffering – expect for the one he left behind. As if he knew his days were numbered, one of his last text messages to my mom was:

“Many people told me I’m unlucky for not having boys to carry my name. On the contrary, I am the luckiest father and man in the world, both our daughters grew up to be respectful daughters who took care of me and spoils me. When I was in Denver Sendie spoils me and her and Pheng never stops show me a good time. Now I’m back home, Acha did the same. Always make sure I have all I need, especially my favorite food. I’m sure both girls turn out well because of you, because of your upbringing. Thank you my love for raising our daughters’ right. I know you will be in their great hands.”

I love you daddy and I miss you so much….  Thank you for everything, for being the greatest dad a daughter can ask for, the greatest grandfather for my two little girls…  for all the wonderful memories you left us with… Until the day we meet again…

Mother knows

I’m still not ready to talk about it more in details of what happen, but I wanted to share my story because I think it is important for mother’s out there to listen to yourself and seeks for comfort and support.                             

When our daughter Kalia was born, we were thrilled to have a beautiful baby girl. All of her test at birth showed normal results, as did the second one at the age of 7 months.

Kalia had always been a very happy and communicative baby. Then, as months passed, she improved all of her skills and developing as normal and baby possibly can. Even at her 1 year checkup, her pediatricians made comments on how she actually ahead. She masters some skills that normally mastered by a 18 month old baby if not older.

But later, at about the age of 18 months, she seemed to have fallen behind her peers as far as one of her skills were concerned. People around me always assure me that she’s fine and she will master that skills later on and baby develop at different rate and how I’m being paranoid. I heard this many – many times. Even from my husband.

Despite all that, I decided to have a special test done. My pediatrician, bless her heart, support me 100%. She told me to wait until Kalia is 2 but she did say, I shouldn’t ignore my instinct. Even though my husband kinda thinks it’s a waste of time at first, he supports me as well.

We did the test last Friday – I guess because it wasn’t really a medical reason and the test was done just based on instinct; it took us almost 1 month to get an appointment with the specialist, but we finally get in. As I hold her during the test, my heart slowly sink, I just knew that she blew it.

Even though I suspect it, both my husband and I were shocked by the results, it is different to suspect something then to actually hear and confirm it. : Fortunately, the doctor was very nice and professional. She immediately informed us of what the next steps should be. She immediately forwards the results to Kalia pediatrician, to different specialist and county for moral helps and supports. She gave us the entire outlet we need on how to move forward.

It doesn’t makes it any easier, I remember sitting there and listening to the test results and look at my husband next to me who have this stern look on his face and then I glance at Kalia and Tyra who were just happily playing with all the toys at the doctor’s office, my eyes just start getting blurry and I just cry right there and then.

I started asking the why questions… what did I do wrong, what did I miss, what I could’ve done different? What is it… WHY????? Don’t play a blaming game, that’s what the doctor told me. Nothing I’ve done or my husband that causes this, she assures us. It happens….  Things happens…

Doctors told me and my husband that we should not under estimate a support group for us. While we will continue to work on Kalia and her future but it is also important for us to get some counseling and support. I thought friends will do.

While we were waiting to get the test done, I took pictures of my kids playing in the waiting room and I post it on facebook. Some of friends start calling and ask if everything is okay. Friday afternoon was a very overwhelming time for us so I don’t return phone calls until Saturday. Even then I was still mixed with anger and guilt.

After hearing of what happens, I would say most friends are very supportive and sympathetic. However there are few that shocked me more. By the way, I’m talking just a handful of people that knows about it. Some friend thought I was being a drama queen and I shouldn’t fret about it too much. Okay …. But then, some friends who was my longtime friends and I consider a very good friends actually start blaming me, her first reaction was “What the H#@#$ did you do to her? Did you clean her *** too hard that causing this?” She’s actually the only person I reach out too – beside my family. And her respond was not something I expected.

After that I just shut down. I ignore phone calls and refuse to talk. Until Tuesday, blogging friends that become facebook friends invite her friends to rant on her page. I figure none of her readers knows me anyway, I will rants….  The response was so overwhelmingly positive though…. I cry and I cry reading it over and over again….  Some even helps me relate to their situations and some just there “holding my hands”. These comes from strangers.. Literally! And yet, so far they have provided me with comfort beyond believe. I deeply touch and humble by that.

Don’t get me wrong, I do have friends here who also hold my hands an cry with me… and I’m will be forever grateful for them. But the situation between my “good” friend and “strangers”  had open my eyes that we do need another outlets than just people around us. The neutral people that will not judge us, that will listen and offers suggestions, supports from neutral perspective.

My pediatrician calls to check on ME. Not Kalia, but ME and my husbands. She’s confidence that Kalia will be in a great hands with doctors and specialist but she also want to make sure we get the helps we need in order to assist kalia. She let me cry with her and she listen. She is too in a way a stranger..  but she’s there for us.

I take comfort that Kalia will get what she needs and my husband and I will get what we need in order to helps Kalia. What happens to us is a gift, it brings everything into perspective that my children truly is a blessing to us and we will be forever grateful for them.

God trusted them in my hands and I will do whatever it takes to make sure I don’t betrayed that trust.  So far.. (so far..) if there’s any good comes from this is a realization that you should count every blessing and not burden yourself with something small. One friend calls me yesterday and thank me. She thank me for share with her my situation. She told me she can’t sleeps at night thinking what would she done if she were in my shoes. She told me I put things in more perspective for her and she thank me for it.

One thing that my pediatrician says that hits me is: “Thank God for your Mother’s instinct, we caught this early.”

So to all mother’s out there… LISTEN.. those voices that tells you when something is off… LISTEN. Who care about other’s opinion, it is you that can feel it in your heart. And use every outlet provided to you for helps.

Thank you,

Sendie

 

I Am the New Year

I Am the New Year. . . . . . . . . . . . . . . . . . . . . I am the new year. I am an unspoiled page in your book of time. I am your next chance at the art of living. I am your opportunity to practice what you have learned about life during the last twelve months. All that you sought and didn’t find is hidden in me, waiting for you to search it but with more determination. All the good that you tried for and didn’t achieve is mine to grant when you have fewer conflicting desires. All that you dreamed but didn’t dare to do, all that you hoped but did not will, all the faith that you claimed but did not have—these slumber lightly, waiting to be awakened by the touch of a strong purpose. I am your opportunity to renew your allegiance to Him who said, “Behold, I make all things new.” I have the opportunity Once more to right some wrongs,

“Here we are in a month named after the Roman god Janus, an appropriate personification of the start of the new year. This particular Roman god had two faces so that he could look ahead toward the future and back at the past at the same time. As we get rid of an old year and look forward to a new one, we all try to be a little like Janus. We know through experience what we did wrong and what we did right, and hope to do better this year. Some people make ambitious new year’s resolutions; others just take a deep breath and hope for the best.…”

HANDBOOK 2012

Health:
1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E’s — Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2011.
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minutes walk daily. And while you walk, smile.

Personality:
11. Don’t compare your life to others. You have no idea what their journey is all about.
12. Don’t have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don’t over do. Keep your limits.
14. Don’t take yourself so seriously. No one else does.
15. Don’t waste your precious energy on gossip.
16. Dream more while you are awake.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don’t remind your partner with His/her mistakes of the past. That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don’t hate others.
20. Make peace with your past so it won’t spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don’t have to win every argument. Agree to disagree…

Society:
25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time w/ people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won’t take care of you when you are sick. Your friends will. Stay in touch.

Life:
32. Do the right thing!
33. Get rid of anything that isn’t useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is, it will change…
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come…
38. When you awake in the morning, thank GOD.
39. Your Inner most is always happy. So, be happy.

Happy New Year!!!!

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Happy 2012

I didn’t get a change to do my (intended) last post of 2011. My youngest one got a nasty case of ear infection just that Saturday and it’s pretty much our New Year, holding a hot fever and screaming baby. I hope that doesn’t really illustrate how our 2012 will be. She’s all better just few hours after the clock strike to 2 am new years day and we finally drifted to sleep around 3 am ish.

What I was going to say was:

2011 has come to a close. This year has seen many ups and downs. We’ve been through challenges, but we were able to get through them with the guidance of God. I wanted to say that I am very blessed, grateful and appreciative to have you in my life. Your comment, your post without you realized has helped me tremendously, I have felt your prayers and your support. I also have a great privilege on becoming a friends with some of you through facebook and you guys have enrich my life and I THANK YOU for it.

This journey  has been awesome and I am so looking forward to see what else is in store. Thank you so much for allowing me to be me and for letting me grow spiritually and mentally. I feel that I have grown a lot over this past year.

 I am super excited about 2012!!! I am going to continue to love and continue to get closer to God. This is my time to focus more on Him and of course my family and to stay on the path He has set for me. My faith will continue to guide me and I will forever Thank God for everything, including for the struggles, the storms, the messes and the tests for they make you stronger in faith and with Him.

Love and Blessing….

-sendie