A Privilege and a Blessing

Over the weekend, I attended a parenting talk for parents of children with special needs. It was spearheaded by a lady in our sister church who wrote a book about her journey as a mom with a child who has Down Syndrome.  As I went home that afternoon, after listening to a couple of speakers and hearing the testimonies of several parents who have children with special needs, I realized that being a "special" mom was indeed that --- special!

In the first year of Sabina's diagnosis, I will have to admit that there was a part of me that was embarrassed by her condition. I would hastily explain to people who did not know, why she could not respond or sit up like a normal baby her age. As the time went on, it was not so much embarrassment anymore because we learned to adjust and compensate for her disabilities; however I still did not like people seeing what a huge difference there was between Sabina and their normal children.

However, after this weekend, the Lord reminded me what a privilege and a blessing it truly is to have Sabina in my life. Not just because of the many indescribable joys she has given us as our daughter, but truly what the Lord is doing, has been doing and showing in our lives because of her. In Sabina's disabilities, God is able to show me His ABILITIES! His ability to do GREAT things in our lives, our children's lives and in others.

Surely, God doesn't make mistakes. He did not create Sabina and go oops. Sabina is still wonderfully made. God reminded me that He did not make her for me. He made her for Himself; to be used for His purposes and for His glory. So even if I still to this day do not know the whys, I can trust Him with whatever the answer. I may not see it with my limited and finite mind, but the Lord knows the exact purposes for which He has called Sabina and myself.

Have you heard of Nick Vujicic? He is man born without any arms and any legs. And yet, this man is being used mightily by the Lord to bring so many people to Him. When you hear his testimony, you can't help but feel ashamed at how we who have everything, can complain about the littlest things. And yet, here is a man, who did not let his disabilities ruin him and is able to live a full life. Instead of grumbling at what he didn't have, Nick surrendered his life to the Lord and let God use him for big things. In one of his interviews, Nick says that it is not about capabilities. This earth is temporary, and one day all will be gone. In heaven, he will have arms and legs and it will be permanent and forever. For now, he doesn't need the circumstances to change, Nick just lets God take the rest.

Nick reminds me it is the same with Sabina. One day she will be perfect!!!!! and oh, what a day that will be!! In the meantime, I need to see that Sabina and our family have been called by the Lord to achieve something here on earth. It is a calling for others to see that in circumstances like these, God is able to do amazing things!!! It may not always be physical healing. It could be character changes in us to be more like Jesus; or simply living lives that point others to the Lord who sustains us each and every day. Whatever the reason, it is indeed a privilege to be used by the Lord for His glory. So yes I can now say with joy and excitement in my heart, Sabina is a special needs child and I am a special needs mom!! What a BLESSING!!!!

Psalm 127:3-5  Children are a heritage from the LORD,  offspring a reward from him. Like arrows in the hands of a warrior are children born in one’s youth.  Blessed is the man whose quiver is full of them. They will not be put to shame when they contend with their opponents in court.


Jer. 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 

Making Memories

The past month has been a flurry of activities. Aside from the usual routine we go through at home, this August saw exams for my eldest in school, my sister in law and her family were in town for 2 weeks, my tennis team joined a ladies' doubles tournament, I had to write an article for a parenting magazine, it was my mom's birthday, my brother in law's birthday, my father in law's birthday, we attended an out of town wedding, and my eldest just had a swim and slumber party the other day to celebrate her 9th birthday.

August also, being the birth month of Sabina, comes with several doctors check ups and tests. Sabina gets checked and worked up every 6 months. They check for several things in her blood, kidneys and urine. She undergoes ultrasounds for her heart, kidneys, and liver as well. Her metabolic specialist also does a review of all the vitamins and meds Sabina takes, and decides if we need to see her other specialists for other concerns. I like Sabina's metabolic doctor. She is very pleasant and good-natured and has a very positive outlook. This last check up with her, as we were discussing Sabina's everyday routine, she reminded me of 2 things:

1) To not discount that Sabina cannot understand things. Dr. B explained that even tho Sabina cannot talk or express verbally or tell her hands to do things, she said that we do not know for a fact that she does not comprehend what she hears and has learned from us over the last 3 years. Sabina could be a smart child and we just cannot validate it.

This is what Teacher Jing also tells me, because during her therapy sessions, Sabina can follow instructions. Maybe its because of routine, but she is able to cooperate and do what teacher jing asks her to do. We see this also at home sometimes, that Sabina knows certain things. So I figure, if she knows things, then my mother's heart believes that Sabina also feels things. She feels when we are happy and excited. She feels when we are sad, or tense. She feels when there is anger in the room. And I believe Sabina especially feels the love from people who have given her that warm, caressing touch, that sincere look of concern, that gentle voice that has said hello, the warm how are you's with the big smile, and the hugs and carrying on the lap that is not taken forgranted.  


2) Time with Sabina is limited. This we know all too well. But Dr. B put in another perspective which I thank the Lord for. She said, while she understands our need to protect Sabina from viruses and bacteria she may catch from enclosed public places and overcrowded areas, it will still benefit Sabina (and us) to be able to take her places away from the home where she can get fresh air and also see people interact. Dr B. reminded me to make memories with Sabina while she is still able to get around and is relatively healthy and well. Making memories with her will be good for her sister and for us as a family.

And so, I am glad and thankful that we decided to celebrate her 3rd birthday this year with both immediate families, her godparents and our special friends who have been with us since the beginning of Sabina's mito journey. At one point, we did not think Sabina would live past the age of two. But God has been good! And tho this past 5 months of seizures has brought about regression on Sabina, we thank the Lord for the good days, and the memories that we have been able to make with her everyday this last 3 years. I think about the numerous beach trips with her, the walks around the village and to the park, times spent splashing in the pool of our nearby club, and just times we would huddle around the bed with Sabina on our lap trying our darndest to make her laugh or smile and then crying with tears of joy when she does flash that adorable, bright smile. The last 3 years have seen God's goodness, faithfulness, mercy, lovingkindness and numerous amounts of GRACE. Thank you Lord for another year in Sabina's life! We look forward to more special days with her, as we fill our albums, our minds and our hearts with many priceless pictures of Sabina.

Psalm 143:5 "I remember the days of long ago, I meditate on all your works and consider what your hands have done."






 

Mother's Song - A Traditional Lullaby

I heard this poem over Disney Junior and immediately fell in love with the lyrics. It conveyed perfectly how I feel about Sabina. Despite what the world may view as imperfections, Sabina is the most beautiful baby to me. (of course, so is my eldest, if she's reading. :)

When I looked up the poem on google, I was pleasantly surprised to discover that it was written in 1890 by a woman named Sabine Baring-Gould. :) (she was a Reverend too).

I have read and re-read this to Sabina many times since finding the lyrics, and I always tear and choke up as I recite the words out loud to her. For maybe this poem, written more than a century ago by a mother with the same name, was meant for my little Sabina today and now.

And so, this poem/lullaby is dedicated to my dearest, precious baby girl, who by the way, turns three in a few days. I love you Sabina. And if I may borrow the words of Rev. Gould, this is my mother's song to you ----

My heart is like a fountain true

that flows and flows with love to you

as chirps the lark unto the tree

so chirps my pretty babe to me 

There is not a rose wherever I seek

as comely as my baby's cheek

there's not a comb of honey bee

so full of sweets as babe to me

There's not a star that shines on high

is brighter than my baby's eye

There's not a boat upon the sea

can dance as baby does to me

No silk was ever spun so fine

as is the hair of baby mine

My baby smells more sweet to me

than smells in spring the elder tree

A little fish swims in the well

So in my heart does baby dwell
A little flower blows on the tree
My baby is the flower to me

Ten thousand parks where deer do run

Ten thousand roses in the sun

Ten thousand pearls beneath the sea

my babe more precious is to me.

 

 

 

A Poem from Sabina

I may not talk, walk or crawl,

I may not be able to stand 3 feet tall.

I was born with a disease that has no cure,

Yet I am special in God’s sight, that’s for sure.

Because of my sickness, I have seizures everyday,

I am turning 3 but unable to go out and play.

The things that other babies and kids do I cannot,

I have several disabilities, yes lots of those I’ve got.

My mito disease is a progressive one,

Certain things I was able to do before have now come undone.

But that’s ok because I know,

The wonderful love of Jesus before me goes.

My family surely love me and provide the utmost care.

I dwell and live on their kisses and hugs like teddy bears.

I enjoy being cuddled just like any other baby.

I thrive on the sense of loving touch that mommy gives me daily.

I enjoy watching Disney Junior and having books read to me,

I enjoy splashing in the pool with Sophia and daddy.

Three times a week, I see my Teacher Jing.

Even though it’s hard, my therapy is everything.

My food is always mixed with vitamins and meds galore.

Yet I get a treat once in awhile with my favorite ice cream and more.

I may be different, I may not smile as much.

I may not respond to laughter and such.

But please don’t think I don’t understand or feel,

I am a person too and can cry sometimes still.

A person with a disease needs lots of care and love.

Not charity or pity but real love from above.

Special kids are people just the same,

We live in your world too, but just belong to a different ballgame.

So when you see me, please don’t just glance.

I may be having a good day, and show you my bright smile by chance.

When you look at me, I may not giggle or hold out my arms,

But deep inside me, I know God’s blessed me with a special charm.

But please don’t be sorry too for how I am today.

Just treat me like you would any other toddler that’s all I can say.

God has a higher purpose for me this I know.

His mercy and grace sustain my life as I grow.

When one day in heaven with Jesus, my family and friends I’ll be.

I’ll be able to walk, talk and finally say -- 

"Despite my disease, thank you all for being so loving and kind to me."

Hugs

A little over a month ago in a birthday dinner, I met the wife of one of the guys in our village tennis club. As I said my goodbyes that night, this sweet lady gets up, tells me it was nice meeting me and then wraps her arms around me to give me a really big hug. As I left the party, I realized how nice it was to get a hug. And her hug I felt, had so much warmth and love despite only meeting that evening. As i prepared for bed that night, it got me thinking that -- 1) A hug can instantly brighten your day 2) A hug speaks a thousand words 3) Hugs are not given as much as they should.

Filipinos in general i think are not huggers. We aren't touchy people. Filipinos brush cheeks with each other when they greet and hugs are not part of our culture. When I was living in the States in my pre-teen years tho, everyone in school hugged each other. It was a way to say hello and express friendship. In my mother's side of the family, (who all live and grew up in the states) we all give each other a big hug when we see each other. In fact, hugging cousins and aunts and uncles were something my husband had to get used to in our family.
    
In good faith, hugs mean hello, nice to see you, thank you, see you soon etc..  In the lonely and sad times tho, a hug can mean so much more. It can say a whole lot more than words can express. It says I love you, I am here for you, I feel you, I am praying for you, I understand, I care about you, and I may not have the words to express what's in my heart, but know that I am thinking of you and beside you in your struggle.

In our dark, confusing and sad moments with Sabina, the times I felt great encouragement were when friends and family just gave a big hug, an arm over my shoulder and held my hand. No words needed to be said, but were all spoken through a simple touch. Sometimes, for us moms in our own special situations, a hug is all we need to get us going, and nothing more.

Thank you Lord for the gift of hugs and the friends and family who have given them along the way. :)

Isaiah 40:11a "He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to His heart."

Father's Day

Father's Day happened a week right after my grandmother passed away; and with the other tragic deaths that also occurred during the same time, I didn't get to write about the one father in our lives who is to be truly, truly appreciated and acknowledged for all the effort and love he puts in to being one great father. This person is none other than Sabina's daddy.

Sad to say, I know of quite a number of dad's who have never changed a nappy; or never wiped poop from their child's butt; never fed their 10month old who splattered food all over the floor; or have never given their child a bath; or have stayed up for 3 o'clock feedings and colicky babies. For all intensive purposes, these dads prefer to do the "fun" stuff with their kids and have left the "dirty" and exhausting work to the mothers or yayas.

Not so with Sabina's daddy. Sabina's dad has not only done all of the above with both my girls (plus more); he has happily volunteered to do them many times even when I have not asked. He is certainly a wonderful dad to my daughters and is extremely hands on with both of them. There is nothing he wouldn't do for his two princesses.

In Sabina's case especially, both parents need to work together to be one good, solid team. We need teamwork to be able to adjust and manage her many needs. I cannot do everything on my own; and in our situation, I can always count on Sabina's dad to be able to be a great partner and teammate. In Sabina's first year and a half, it was his job to give her daily bath. And he did not do it grudgingly. That was his one way of bonding with Sabina. Many times, he would give her late night bottle of milk with her meds; and to this day, when I am too exhausted to get up when Sabina needs the extra comfort she needs from seizures or an illness, he will carry and rock Sabina to sleep in the wee hours of the morning without complaint.

Sabina's dad will never refuse to change her diaper with poop, suck the mucus from her nose, or stay up with me if I asked. He helps me keep track of medicines, and vaccinations, and takes the initiative to remember what routine tests Sabina needs to do next. He is one SUPER dad! I sure hope that Sabina and our eldest daughter know how blessed they are to have him. :)

Belated happy father's day to the best dad the two girls could ever have!!

 

 

   

 

Something More.......

Sharing what a fellow mito mom recently shared in our mito group.... 
This is dedicated to all the special moms out there who do wonders for their special children.                God bless you all more and more...... 

SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder. AUTHOR UNKNOWN

Sisters

My eldest was an only child for 6 years before Sabina was born. I was quite content and happy with having just one child; but my daughter longed to have a brother or a sister. (actually sister was the preferred choice of sibling) as she saw her friends having fun with their own brother or sister. She wanted to have someone to play dolls with and share her many toys with. And so, when she was about 4 1/2 years old, she started praying hard for the Lord to give her a sister of her own.

I finally got pregnant after more than a year of trying to conceive. My daughter was thrilled that her prayer was answered!! Even more exciting was learning that the Lord did grant her desire to have a sister. (she was with us when we had the ultrasound to find out the sex, and she kept asking -- "so, is it a girl? is it a girl? when the sonologist confirmed it was a girl, she gestured with her arm and fist and said YES!!!!)

Throughout the pregnancy, I had daydreams of two sets of feet running in our garden screaming at the top of their lungs with laughter. I would look at my daughter and look forward to seeing her be a doting big sister; holding her sister's hand while they walked together. I would see two girls in my bedroom jumping and climbing on my lap asking me to braid their hair. I would dream of two sisters wearing matching dresses and bathing suits and filling our home with such girly stuff. I would often tell my eldest that she would make a great big sister as she would constantly talk to my tummy and tell her baby sis that she loved her. My eldest also actually named her sister Sabina. We do not know where she learned of that name, but decided it was a beautiful name for our new baby girl. And so, Sabina it was, as named by her "ate".

Well, as you know by now, those dreams continue to remain just that. Dreams.

Because Sabina is pegged like a six month old baby, our eldest cannot play dolls with her. She cannot hold her hand as they walk together around the house. There are no running feet in our garden except for the feet of our eldest daughter. There are no giggly screams and uncontrollable laughter resonating our walls. There are no jokes shared between sisters or Disney princess movie dates together. In many ways, our eldest daughter still lives like she were an only child.

It saddens me to think how our daughter got her answered prayer, and yet.......
Sometimes, she asks me, "Mom, how come Sabina has mitochondrial disease?" I tell her that I don't know. But I do know that the Lord has His purpose and it is for the best even tho we do not understand. She and I have had crying sessions together many times over Sabina's condition.

However, I am blessed by my daughter because inspite of her sister's disability, she is 1) not ashamed of Sabina. She is proud of her sister and openly shows affection. 2) she loves Sabina so much and prays for her healing everyday. 3) She still finds ways to relate to her baby sister, by either reading a book to her, or finding ways to make Sabina laugh and smile. Sabina on the other hand, adores her big sis and she is the only one who can easily make Sabina laugh and giggle. Even I struggle sometimes how to get Sabina to smile; but if its our eldest who does it, its almost as easy as pie.  :)

In all of this, my hope and prayer is that our eldest is able to still see that 1) God is good. No matter what the situation is, God is good. 2) God is in control and knows what is best even though we don't understand. 3) To be thankful in everything.

I don't want my eldest daughter to grow up being bitter with the Lord because of Sabina's disease. I am trying my best to let her see that we still praise the Lord in the midst of the storm. As a result Lord willing, she will grow up to be a more understanding person, a woman who is compassionate towards people with special needs, and a woman who loves the Lord with all her heart. :)

As for me, I still have not stopped dreaming of two sisters who love each other so much, running on the beach, sharing a joke and laughing in the wind with ribbons on their hair. Nothing is impossible with the Lord!!!

Luke 1:37 For nothing is impossible with God. 
Jeremiah 32:27 I am the Lord, the God of all mankind. Is anything too hard for me?

Consider it pure joy when....

This past two weeks have been a series of sad events one after the other. Aside from my Mama Red passing away, another grandfather (the 1st cousin of my maternal lolo), who we were also quite close to, died of a heart attack while enroute to the US from Hong Kong. They could not revive him onboard the aircraft and my lola had to endure the tragedy alone for six hours while waiting for the plane to land in LA. :( The day before yesterday, I also found out that the three month old baby (and their first one at that) of a former schoolmate also passed away a few days ago due to complications and possible infections from Hirschprung disease. :( As a fellow mother, I was extremely saddened by this news, as I talked to this friend of mine just a few weeks ago and have been praying for her baby boy. She must be terribly devastated and heartbroken.

I stopped to think then about all these heartbreaking events, and asked the Lord, why all the sadness? Why the grief? Mama Red was 92 when she died and lived a full life. But my other lolo was only in his mid-70s. A man full of life and adventure, who loved the outdoors; and just this April, celebrated his 50th wedding anniversary with all his family and friends. And what about the baby? Here was a couple who had been trying forever to have a child, and when they finally had one, the Lord took him home in a fleeting three months. Sigh..

And then the Lord pointed me to James 1:2-3 which says, "Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance."The Bible doesn't say if you face trials, it says when. And we are to consider them pure joy. Sigh. Easy to read, but so so difficult to apply. Joy is certainly beyond emotions and circumstances; it is based on knowing who Jesus is and the hope that we have in Him. 


I learned in a Bible study once that there are no accidents in the life of faith. God knows ALL of the things that happen in our lives. Nothing happens that doesn't get filtered through His loving hands. I don't understand why all of these have to happen, but I know that the Lord is indeed sovereign and in control. And we can take comfort in the truth that He will never, ever leave us nor forsake us no matter how truly devastating or difficult.

2 Cor. 4:17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.


Jer. 31:13b I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.


    

Not goodbye, but see you later!

My paternal grandmother, who we fondly call Mama Red, passed away on Saturday, June 10. As we were on a family vacation out of town, I could not be there with her during her last hours. I did get the chance to speak with her on the phone tho and tell her that I loved her very much before she died.

I was very close to my Mama Red. I grew up with my grandparents and they showered me with so much love. I have so many fond childhood memories with them that are too many to count. As I have been missing my Papa Mert these past 20 years, I will surely miss Mama Red and our many conversations and stories she would tell me. Our family Sunday lunches and holiday celebrations will never be the same. Her presence will definitely leave a big hole in our family's hearts.

While Sabina never got to enjoy her great grandmother the way my eldest did. I have treasured photos in my mind of Mama Red giving Sabina many kisses and hugs. My lola was always very concerned with Sabina's condition and she would always tell me that Sabina was in her daily prayers.
 
As I grieve over the loss of my dearest lola and with great sadness in my heart that she is now gone from this earth, I still have peace and joy. Because i know for sure, that one day, I will be reunited with Mama Red and Papa Mert in heaven with Jesus. My grandparents trusted in Jesus Christ as their Lord and Savior, and the Bible promises eternal life in heaven when we believe in His saving work on the cross.

So today, as I prepare my eulogy for my beloved Mama Red, i know it is not goodbye, but see you later.    

I love you Mama Red!! I will really miss you!!!

1 John 5: 11-13 "And this is the testimony: God has given us eternal life, and this life is in his Son. Whoever has the Son has life; whoever does not have the Son of God does not have life. I write these things to you who believe in the name of the Son of God so that you may know that you have eternal life. "

Lessons from Sabina

Children are teachers of parents too. My eldest has certainly had her share of "instructions" for mommy and daddy. I am awestruck sometimes at some of the things I have learned from her. But learning doesn't stop with "normal" children. Several days ago, one of my BFFs reminded me of this, by sharing an insight of a good friend; that kids with special needs also allow us to learn something. Infact, our good friend asks -- what can I learn from my child today? And that made me stop and think; do I learn something from Sabina? Have I learned something or somethings from her? And you know what? I sure have!! :)

Allow me to share the top 3 lessons I have learned from my dearest Sabina:

1) The best things in life are the simple things ---- Sabina does not need the latest toy. She is not swayed by the newest craze for kids her age. She just doesn't need to have it, as she doesn't understand. However, Sabina will gravitate towards a colorful block that she can grasp. Or a simple rattle that makes a clinking noise as she shakes it around. She smiles as you flip a board book with her or better yet, she will giggle at your own innovative ways to create sounds (pursing your lips, blowing raspberries on her tummy and exaggerating high pitched sounds). With all the gadgets and electronic toys available today, Sabina teaches me that all you need is a simple toy (and maybe an inexpensive one at that) to bring out a precious bonding moment that I wouldn't trade for anything in the world.

2) Communication doesn't have to be verbal ---- Because Sabina cannot talk or babble, I have learned to look at her eyes and watch her body language to figure out what she wants or does not want. (it takes a mother to do this by the way. Inasmuch as Daddy is involved, I think a mother is so attune to her kids, that call it mother's instinct or what, but we can read our kids without having them say much) But for Sabina, I have learned to really be in sync with her. We communicate through eye contact, body movements and touch. She has taught me to be extra sensitive to her needs. Without any word, I know when Sabina is content and happy to be with me. She will hold my arm and sigh. She will look at me and lean her head back against my chest. If she is on her high chair and wants me to pick her up, she will make squirmy movements and keep looking my way until I come to carry her. While I dream of the day to hear Sabina call me mama and say I love you, I learned from Sabina that she says I love you everyday with just her sweet touch and her lingering look. For now that's good enough for me.

3) Look for the joy in everything  --- Whether it be the most mundane or routinary event. Sabina has taught me that there is joy and always something to smile about. Case in point -- one morning, while sitting on my tummy and leaning on my legs as I was lying down, I feel hot liquid forming on my stomach. I say animatedly, "Sabina, you peed on mommy!". It seemed like she understood what I said because she smirked when I said that. And when I saw her smirk, I couldn't help but laugh. So even if I was soaked in a warm pool of pee, I found joy in that moment between Sabina and me. :)

When you have a child with special needs, each moment is precious. It is easy to get lost in anxiety for the future. The long list of what ifs that run through your mind is never ending. But if you focus too much on the future and what hasn't yet happened, you can lose out on the present, and what you could be doing and enjoying with your treasured one. Sabina reminds me of this every day. That life is lived today. We enjoy the moments good and bad; and at the end of the day, we lift them up one by one to a Sovereign and Almighty God.  

Matthew 6:33-34   "But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Therapy with Teacher Jing

Sabina has been having physical and occupational therapy since she was 6 months old. Her developmental pediatrician first called it Early Intervention. Because Sabina is developmentally delayed in both gross and fine motor skills, therapy's function is to address these delays through manipulation and exercises; with the hopes of Sabina one day catching up with some of the normal childhood milestones. Our desire is that Sabina will be able to walk one day, but for now, the immediate goal is for Sabina to be able to sit up on her own - unsupported.

Sabina's therapist is Teacher Jing. Teacher Jing came on board when Sabina was about 10 months old. So Teacher Jing has seen Sabina grow into the little toddler that she is today. Three times a week, she comes to our house to be with Sabina. Teacher Jing is a HUGE part of Sabina's life and mine. She is an important and valuable partner in assisting us with Sabina's physical development. Teacher Jing is not just Sabina's therapist. She is Sabina's "preschool" teacher, who always has a smile and a song for Sabina. Sabina's eyes light up when Teacher Jing enters her room; and on good happy days, Sabina never fails to give her teacher a big charming smile. Jing is definitely someone important to Sabina.  

Teacher Jing has also become someone I consider a friend. What started out as a "medical" partnership to address the needs of my daughter, has grown into a friendship of two people who love Sabina very much and has the utmost concern and care for her well-being. We have both shed tears as Sabina "crawled" for the 1st time. We have both laughed and cheered for joy when Sabina pushed her body up with her arms. And one day, Lord willing, we will both cry tears of happiness when Sabina can sit on her own and maybe stand and take a step.

We are blessed to have found a therapist who can come to our home and help Sabina. In our situation, it is important to find therapists you can be comfortable with and can trust. Having Jing become a friend is definitely an added treat from the Lord. But we are blessed most especially because Jing loves Sabina like her own. Thank you Teacher Jing, for all your do for Sabina. We thank the Lord for you! And if Sabina could talk, we are certain she would say how much she loves you. :)

Here are some pictures of Sabina's therapy session with Teacher Jing.

Philippians 1:7   "I thank my God everytime I remember you."

A Day in the Life of Sabina

A person with Mitochondrial disease may have different sets of symptoms and will have varying degrees or levels of their symptoms. No two patients are exactly alike. Each one is different. Doctors cannot predict what mito symptoms a person will have and when, unlike other types of diseases where it is more or less predictable.  Everything is always wait and see.

On a daily basis, Sabina is given what they call a vitamin cocktail as part of "treatment". Not a guarantee, but vitamin supplements are given to help with the energy and metabolic deficiencies she may have. She also takes sodium bicarbonate to prevent high acidity levels in her body which could be very detrimental.

Sabina at 2 years 9 months, is like a 5-6 month old baby. Mito has caused her to be severely developmentally delayed. Both her gross and fine motor skills are affected. Although she is almost 3, Sabina cannot stand, or walk, much less sit unsupported. She always needs to be held or else she topples over. Food is also mashed as chewing is also not developed well. At her age, Sabina also cannot talk. She does not babble. She makes some cooing sounds and grunts but nothing more. Mito has affected cognitive skills and emotional responses too; so she hardly cries or laughs/giggles or responds like normal babies/toddlers do. But when she does cry, or laugh or giggle, it is sweet music to my ears and a sound to behold. Those instances are not often, so when it happens, they are treasures to remember and savor.

Sabina's day is quite the routine. Very little will change what happens within her day. (unless there are doctor's appointments, visits to family or the occasional swim or trips out of town)                                                                                                                                                                                                                                                          Here's a schedule of what Sabina's day is like.

8:30am - wake up, take vitamin C and carnitine,
8:45am - go out with the stroller to take in a little sun and fresh air
9:00am - eat breakfast that contains vitamins that are pounded -- Thiamine, COQ10, Riboflavin.
10:00am - try to poop
10:15am - drink Keppra, the anti seizure meds, dissolved in water while watching Playhouse disney/Nick Jr. or a sesame street video while playing blocks with mom or going through picture books (these 3 activities Sabina enjoys. She will smile and her eyes light up)
10:45am - prepare for her bath. (2 people need to give her a bath. One to hold her and help support while the other bathes)
11:30-12noon - drink Sodium Bicarbonate mixed in milk and prepare for nap.

2:00pm - awake from nap, take Carnitine again.
2:15pm - eat light lunch that contains again COQ10, Vitamin E and Riboflavin
3:00pm - Physical/Occupational Therapy session (this is 3x/week done at home) (on days there are no therapy, I may do a few exercises with her, or I use it to play with her and read or do flash cards. Or now that its summer, we may go out for a swim)
4:30pm - Rest from therapy and drink milk with sodium bicarb
5:00pm - out with the stroller again to get fresh air and sun
5:30pm - Watch Baby Einstein or videos, or help her play with toys. Take carnitine.
630pm - Eat dinner mixed with COQ10, Thiamine and Water with Keppra once more.
7:30-8:30pm - Sabina's time with Daddy, Sophia and Mom together. We interact with her and try to make her laugh and smile.
8:30pm - Prepare for bed, take carnitine and Vitamin C.
9:00pm - Milk with Sodium bicarbonate
4:30am - even when asleep, milk is given with sodium bicarbonate. (We cannot miss giving this. So our alarm clock goes off at this time)

And at any given time of her day, Sabina gets her seizures which have now become a normal part of her everyday life. When she does have a seizure, it zaps the energy of out her and she gets very very tired. With the deficient energy that her body is able to produce, seizures take the little that is left.

But all in all, we've learned to capture the good moments, to enjoy hugging her, kissing her, catching those smiles and cheering at her laughs, and just finding the joy in having Sabina communicate with us in her own special way. It's sure a different life from a typical family, but for us, it is our portion and our cup, and for now our season in life.

Acts 17:26b-28 "....and He determined the times set for them and the exact places where they should live. God did this so that men would seek Him, and perhaps reach out for Him and find him, though He is not far from each one of us. For in Him we live, and move and have our being."

God's reminders

I had lunch with a good friend today. And while it was primarily an overdue lunch date as we have not seen each other in ages, and my mommy break, i did not realize it would also be a time for God to remind me of a few things.

With all the things that have been going on the past several days (Sabina's seizures increasing and are now affecting her daily living), I've been quite frustrated and disappointed with the way things are with her doctors and the seemingly "non-working" anti-seizure medication. And in some ways, I have also been frustrated at what I perceive to be God's "slowness" in answering my prayers for her seizures to disappear or even just dramatically lessen.

However, in God's loving ways, He reminded me through my friend today of a few things:
1) Nothing escapes God. He sees everything, knows everything. Even my frustrations; and I can vent out to God exactly how I feel.
2) All this is temporary. One day, we will be in Heaven with the Lord Jesus, and there will be no more tears.

3) God chose me to be Sabina's mommy because He knew I could be a special needs mom. (didn't I just write something similar to that effect in my mother's day post? But somehow, God had to remind me again today and it encouraged me to have a friend validate that).


Sigh. I thank the Lord for His encouragement and it always amazes me how He uses people to lovingly remind me that even tho I think He is silent, He is not!! He hears my cries and knows my hurts and wants to reassure me that He is upholding me with His righteous right hand. What a wonderful God we have!

Psalm 10:17   "You hear O Lord the desire of the afflicted; you encourage them and you listen to their cry. "

Psalm 57:2    "I cry out to God Most High. to God who fulfills His purpose for me. "

Happy Mother's Day

When I got married in 1998, I was enjoying a very good job at an international airline. As I climbed the corporate ladder and was having a grand time traveling with my husband, kids were the farthest thing from my mind. I remember telling my husband then that we did not have to have children. I was content and happy with just the two of us.

Well, the Lord changed my heart; and almost four years later, I became pregnant with our eldest daughter. At first I thought well, I could be a career mom. So many women are able to do it. Why should I be any different? I did not want to leave my post at work and at the time I got pregnant, it was the height of my corporate career. However, God changed my heart again, and only a few months after finding out we were able to conceive, I quit my most loved job to follow my husband in the states for his one year training. At the back of my mind tho, I thought I would be back at work as soon as we came back.

So it was in the states, where our beloved first baby was born and I soon became a full time, very hands on mom. I breastfed full time, read all the baby books I could get my hands on, did things for my baby that I thought I would never do. (haha)  But you know what? I loved it! I loved being a mom! I loved the way my daughter held me, would look at me, would smile at me. I loved her touch, her kisses and being able to witness all her milestones! Motherhood was wonderful!! Since then, I have not been back to full time work. I chose to remain a full time homemaker and mother and have had no regrets.

Fast track to six years later when I am pregnant again with our 2nd child. Little did I know that my motherhood experience would become a real test and challenge. I was not prepared to be a mother of a child with an incurable disease. A child with special needs.

A special needs mother experiences something TOTALLY different. There are no more milestones to count or log in a baby book, there are endless nights worrying about the future, there are lots of tears as compared to laughter, there are more hospital trips and doctors visits then your fingers can count vs. trips to the zoo, and as I shared a little of it yesterday, our lifestyle turned around 180 degrees. However, I still love Sabina's every touch, every smile, every look, every sound she makes. And maybe, I love them even more because I know it is not very often, it is unique and special in her own way.

As a special needs mother, I am learning to value every moment, to stop counting the milestones and instead, treasure the small things. The little things that most mothers may take forgranted. I am learning to see the joy even in the difficult times and to look at things from an eternal perspective. I am learning to be content and thankful for whatever situation God gives. I am learning to let go and let God. I am learning, that even a mom with the best intentions cannot have control over her child because the Lord does. And I have already learned, that the Lord Jesus loves my kids, so so much more, ever so much more than I ever could.

So, do I still love my role as mother now that I have a little Sabina who lives with a progressive disease? Oh yes, I certainly do!! It is no doubt most difficult, hard, and sometimes even painful. But -- I know that the Lord has given my two very special girls to me. :) And even if I may never hear Sabina call me Mama or Mommy (but I still pray that one day, she will be able to talk), they are both my blessed treasures and I love them both so very deeply and equally(!) with all my heart.

Isaiah 49:15 "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!"

Happy Mother's Day!!!

Never the same...

As I write, my husband is off to a family gathering. It is the birthday of his grandmother. Everyone in my husband's clan will be there to celebrate their grandmother's 90th birthday i believe. Well, everyone except myself, and Sabina, and her older sister, who decided to stay home and keep me company.

Ever since Sabina was diagnosed with mitochondrial respiratory chain disorder (mito from now on), family gatherings especially during Christmas and New Year's and family birthdays in restaurants and public places, find our family incomplete. Because Sabina is at risk in large crowds that may have someone coughing and with colds, my husband prefers Sabina to stay home where she is safe from contracting a virus. (which to a person with Mito, could be very detrimental) (on a side note, Sabina had to be confined last year for coughs that led to an infection) (So malls and crowded public places are off limits.) Sabina also gets tired easily (part of Mito), and so bringing her to celebrations that can drag on for hours is also not good for her.

So while everyone is taking family photos and opening presents and blowing candles, enjoy a great meal in a popular restaurant, and going "malling" together or what have you, Sabina is never around. She is not in family photos that show all the grandkids or cousins from A to Z. She is not sitting with us in the table for big family dinners. She is not with us as we countdown the New Year or greet everyone Merry Christmas as the clock strikes 12. Every special occasion Sabina is absent. Now, don't get me wrong. There are immediate family dinners at our home, or my grandma's house, or my parents' place or at my mother in law's or inlaws, where we get to bring Sabina. However, special gatherings where the whole clan in present, such as the holidays or big birthday parties, are not celebrations where Sabina is part of. We leave her at home with my mom or a capable adult friend to watch over incase of emergencies.

During these times, my heart bleeds inside. I see the families of my inlaws or my cousins or relatives and they are complete. They have numerous family photos together. We don't. We take our pictures at home before we head out. Last Christmas eve, my eldest daughter voices out what is inside my heart. She says -- "I miss Sabina. I wish she was here."

For an 8 year old to feel and recognize the absence of her sister is heartbreaking. Despite the revelry of gifts and excitement, my daughter knew that something, no someone, was missing. And occasions like tonight, she is missing again. Altho I chose to stay home now to be with her.

Its been this way for over 2 years, and I think in someway, relatives have gotten used to not seeing Sabina during these large family celebrations. They ask about her sometimes, but to be honest, i think maybe some have actually forgotten she exists. My husband has family members who have probably seen Sabina only once or twice. They only get to see her from photos I post on Facebook.

Isn't that sad? Yet, its our reality. So now, the way I view celebrations is never the same. Because someone will always be missing. The absence of Sabina's presence leaves a very big hole in my mother's heart. So how can I celebrate fully when I know my baby girl is not with us and is home alone?? I know because of her disease, she probably doesn't understand what's going on. But I do. And I feel very very incomplete.
 
So, when we are a complete family, I am overjoyed. Whether its a simple thing like a walk in the park, or a quick dinner with immediate family in someone's respective home, I am thrilled we are complete. All of us together just as it should it be.

But as I end this entry for today, feeling a little sad, I looked for a verse to cheer me up and saw this:
Psalm 43:5 "Why are you so downcast oh my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God."

My Hand in God's

A friend of my husband's emailed this poem to him the other day. I was so encouraged and blessed by it that I thought I would share it here.

Each morning when I wake I say,
"I place my hands in God's today."
I know He'll walk close by my side,
My every wandering step to guide.

He leads me with the tenderest care,
When paths are dark and I despair.
No need for me to understand
If I but hold fast to His Hand.

My hand in His, no surer way,
To walk in safety through each day.
By His great bounty I am fed,
Warmed by His love, and comforted.

When at days' end I seek my rest,
And realize how much I am blessed.
My thanks pour out to Him and then;
I place my hands in God's again.
-- By: Florence Scripps Kellogg

Days like these....

 On really good days, Sabina is a cheerful, happy baby. She laughs and giggles when you make funny noises and exaggerated sounds like "Aaaaccchooooo!" It is an incredible joy to see her give us her wonderful and charming smile. I so treasure and cherish the moments like these....... 

"Whenever I see your smiling face, I have to smile myself, coz I love you!!!"

Happy Easter!

Happy Easter!!! It has been awhile since my first post. Unexpected circumstances happened in our household over the past 2 weeks, and then we had a respite during Holy Week which gave us a forced break from TV, Internet, and cellphones. :)

Sabina has been doing well. She had one whole day of zero seizures!! Although only for a day, I am thankful for it. She was her most cheerful, energetic and active self that we have seen in some time. So surely, those seizures zap Sabina's energy big time. Now during a seizure, i count out loud and make it a game for her. Does that sound mean or strange? A game in a middle of a seizure? I figure it might distract her somewhat and if it helps make it less burdensome for her body and mind, then i do it. A mom will do her best to be creative in helping make a situation less horrible right?

I have so many things I want to share, but I will post it one day at a time. In the meantime, let me just say that these past two weeks have been tough. I experienced the betrayal and very hurtful and shocking comments from someone whom I thought loved our family and especially Sabina. And I think, why Lord? Why? After all these, how come more painful trials are added to this journey that is already so difficult as it is? And then the Lord made me remember what happened on Good Friday more than 2000 years ago. All the excruciating pain and suffering that Jesus went through for me, for us and for all mankind. I may not have all the answers to my questions and my own sorrow, but I can take heart in knowing that Jesus LOVES ME!!!!  He died for me!!! And one day, all this will come to pass and the person who hurt our family will be accountable to Him.

But for now, I take deep breaths, cry my heart out, and then hold the hand of my Savior and press on.....

Seizures

It has been a month since Sabina developed seizures. She averages about 2-3 episodes a day. Two days ago, she had six episodes. The most she’s ever had. We are still praying and waiting for the anti-seizure medication to kick in.

Watching Sabina go through an episode is hard. You feel utterly helpless and useless especially when you see her little eyes rolling upward. It’s difficult to comprehend that her brain is rebooting every second.

It’s strange though how something abnormal in our life has now become a “normal” part of our daily routine. We expect the seizures to come and go at any given time of the day; and where I used to get teary–eyed as I would count each body jerk, I now take with quiet acceptance. God’s strength working in me again I suppose. The Bible says, when I am weak, He is strong! And yet, deep inside I beat my chest, because I wish to God the seizures would go away!! And I am so sad because these seizures mean that the mito disease is progressing in Sabina’s body.

But in all this, I see the intricacies of a human body that only God could have made. The way the whole body works is so complex that truly only a Great and Awesome Creator could be responsible for how we are made. So with that thought, I take shelter knowing that the Lord knows how He made Sabina inside and out. Each cell in her body and each brain impulse is accounted for, and in His hands. I just have to continually remember and trust in that Truth.

Psalm 139:13-16

For you created my inmost being; you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.