Monday, May 30, 2011

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."

Tuesday, May 24, 2011

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."

Monday, May 16, 2011

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."

Thursday, May 12, 2011

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. "

Friday, May 6, 2011

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."

Tuesday, May 3, 2011

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