SECOND INSTALLMENT (See previous installments below)
I wrote this poem back in the summer of 2009. Jordan was only seven years old at the time. The idea behind it is one that Im sure is shared by many parents of special needs children and in general. That the main purpose of their existence (the parents) is for the well-being of the child; thats the case for me and my wife when it comes to all our children, but especially our son. It seems that more than half of all that we do, half of our labor, half of our being, half of our heartache, and half of our joy (and more) involves Jordan in some way. To make sure that hes receiving the proper benefits and services and that hes being treated fairly wherever he goesat school, on the playground, during parties and get-togethers, and even in church. We have made it our lifes goal to do all we can to get Jordan to be as independent as possible before we leave this earth.
The poem you just read describes a mere drop in the bucket compared to what I really feel and what I really want to say. That sounds a bit overdramatic, but its true. Its difficult to state these things right the first time they come out of my mouth, and so I try to write them down whenever I remember. In this case, it came out in the form of a poem.
Only God knows absolutely whats in my heart. Of course, my wife comes close too because were going through the same things together. Other parents and caregivers of special needs kids would have a good idea as well. But as for everyone else, you can only imagine. Whatever youre thinking about regarding what its like to care for a child with autism and diabetes (or any other set of special conditions), believe meyoure not even close. You may have watched movies where some of the characters were autistic or had a type of disability. You may have seen television specials about it. You might have viewed some short video clips on the Internet about the subject, or maybe you know someone personally with a special child. But let me tell youtheres way, way more to it than that; theres much, much more that you havent seen. Only those who are directly involved are experienced enough to really know what its like. People can sympathize, but they cannot really empathize. That is, they cannot fully comprehend it unless they have a special child of their own.
Dont misunderstand me. Im not saying that no one else cares. The fact is many people in our lives really do care. They want to help, so they offer their services, and they provide support. At the very least, they are polite, and a number of them are even genuinely friendly to my son. They try to converse with him and include him in various activities, and we appreciate it deeply. No question about that. But at the end of the day, we are the primary caregivers, and as it stands, Jordan will require our total care for the rest of his life, and ours.
This poem is just one example of me pouring out my soul in overly dramatic and somewhat artistic fashion. That is, putting down on paper whats in my mind and heart. Ive written several other poems and songs for Jordan and the rest of my family, a few of which might be shared in other sections of this book. Youll have to read the whole thing to find out. Oddly enough, I dont set aside time to create these verses, but the words pop into my head at random moments in my everyday routine activities. For example, when Im stuck in traffic on the freeway or right before I fall asleep as Im watching TV, or it can be triggered by an event involving my children and so on. In fact, this particular paragraph you just read was not preplanned, but Im writing it ad hoc as I watch my daughter at soccer practice. The truth is, I never used to be like thissensitive that is. I didnt use to write down my thoughts or express my feelings outwardly at all for that matter. I guess having a child like Jordan has really changed me. Being a father in general has made me a lot more emotional than I ever thought I would be.
Anyway, my purpose in writing this book in particular is multifold. Its mainly for Jordan, of course, essentially a labor of love. Maybe one day, he can read this and even understand it. Then he can see how far hes come along. Its also partially selfish though; to be more precise, its because I just really need to get this all out. Writing is good for me because I can always go back and edit my words and adjust my thoughts here and there. It beats fumbling around with a lot of hmmms and uhhs while Im trying to form my statements verbally on the spot.
Another reason for this book is to communicate with other parents and caregivers of special needs childrento share my story with them, trusting that my experiences are somewhat related to theirs, at least in the general sense, even though every child is unique. Maybe there are people out there who just found out that their child is autistic or diabetic or both, and theyre trying to cope. This book is for them too. Ive read a number of books and heard testimonies from other parents in similar situations. And I recall nodding my head in agreement as they shared their stories and even chuckling at some of the similarities.
Another important objective, moreover, is to hopefully help others better understand what parents of special needs children are going through. I know earlier I said that no one else (except God) totally gets us. And yeah, thats still true. But with this book, maybe, just maybe, others would be encouraged to make more of an effort. So that when they see a special needs child holding hands with his parents, they are not indifferent about it, but genuinely interested. When they come across an autistic boy or girl making loud noises, they dont give strange looks or make rude gestures but instead try to converse. And whenever opportunities arise, they take the time to educate their own children about these kids who have it a lot tougher than they do. These seemingly minor acts mean a whole lot to us parents. We notice every little thing because our sensitivities have been heightened due to our situation. To us, theres a big difference between being sincerely friendly versus just acting politeand believe me, we can spot that difference in a heartbeat.
Im not claiming that these little narratives and testimonies are going to be all that interesting to others, aside from me and my wife. Honestly, I dont expect many people to bother picking up this book and reading through it (but I hope Im wrong). Why would anyone care about our lives? Were not famous or anything; were not charismatic, and our stories are not going to change the world. Theres nothing magical or revolutionary about them. I dont write with any special training. I pretty much just speak my mind freely. Its not always happy and peppy; sometimes Ill complain and criticize. I may even sound harsh or too frank. If I didnt do that occasionally, it wouldnt be real, especially considering our situation. To most, these are just ordinary stories of a boy and the unique experiences of his parentsno big deal. To us, however, they have defined who we are and have characterized our lives. To those who choose to experience a piece of it through this book, I want to thank you for your support. In any case, I hope all readers learn something valuable from each one of these passages.
Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of ones youth. Psalms 127:3-4
Half My LifeThe Poem
Half My LifeThe Poem
Children are a blessing, In so many different ways, More than any picture can describe, More than words can ever say.
My kids are no exception, My girls and boyall three, Of course, theyre far from perfection, But theyre all just wonderful to me.
I love them all exactly the same, I adore my children equally, But my son is unique in his own special way, He requires more responsibility.
Emotions ran high when we first heard the news, One of our biggest fears actually came true, Shocked and surprised to say the very least, It was an eye-opening moment, humbling indeed.
But because of it all, I learned a whole lot, Way, way more than I ever would have thought, And though there are yet many battles to be fought, Its still a much more rewarding experience than not.
I have a special bond with that gifted child of mine, One that only increases continuously over time, He has helped me grow well, in faith and in life, He has brought out my strength during struggles and strife.
Though my time is filled and my days are packed, And my plate is full and my workload is stacked, He takes so much more than all these together, Hes half of my life and half of what matters.
Im happily married with a complete family, I serve at my church, more busy than free, Still he takes so much more than all others combined, Hes half of my life and half of my time.
Hes half my life and so much more, He takes half my strength and half my chores, He occupies half my thoughts, half my mind, Half my feelings and half my pride.
He accounts for half my worries and half my fears, Half my sweat and half my tears, He uses half my energy and it takes a toll, But hes still half my heart and half my soul.
Through the good times and bad, the lows and the highs, Through the coldest of winters, and darkest of skies, Still half of my happiness is because of that boy, That blessed little son of mine is half my joy.
He can make my day, With a single smile, Any small step forward, Makes it all worthwhile.
His laugh is contagious, His strength is outrageous, Hes as smart as can be, So wild and carefree.
He can be difficult at times, much tougher than it may seem, But weve gone through many challenges together as a team. And the pain that we share, we cannot easily hide, But I know one thing for sure, hes a good boy inside.
But as hard as it is on his mom and me, I could barely begin to conceive, What the child himself must be going through, Many would struggle to believe.
But through all the limitations, he still presses on, Through roadblocks and obstacles, he still remains strong, And he doesnt even know this, so innocent is he, But Jordan Christian Lim is an inspiration to me.
Sometimes I wonder why God made him this way, “Id rather be the one struggling, I would usually say. Many times in my life I have gone astray, “But dont take it out on my son, I would often pray,
I know God has a purpose and is vast in His ways, Far above my comprehension, well beyond what I can say. And I may not understand this now, but be that as it may, I know that God will use my son mightily one day.
So I praise the Lord almighty, For all the good that He has done, For the truth and love Hes revealed to me, And my salvation through His Son.
Of course God is number one to me, My first and greatest priority, Hes given me challenges, big and small, But I wouldnt change a thing at all.
I thank Him for all His gifts to me, My faith, my life, and family, I thank Him for my two beautiful girls, And the most wonderful boy in the whole wide world.
Hes truly Heaven sent, Gods gift from above, Hes half my life, And he has all my love.
For my beloved son Jordan Lim,
(Editors note: This poem is the beginning of the book, “Half My Life: The Testimony of a father and his special needs child by Joseph Lim, a Filipino American, now being serialized in the Asian Journal with the permission of the author)
(To be continued)
ABOUT THE BOOK: Jordan is a loving, intelligent, and energetic boy who, at a very young age, was diagnosed with autism. As a result, he is signi cantly limited in his communication skills, social development, and academic progress. He exhibits some behavioral issues and maladaptive habits. Additionally, Jordan sometimes has to contend with those who are either not receptive to or not well-informed about special needs individuals.
Despite his condition, Jordans family loves him unceasingly. Together, they persevere through the challenges that accompany the autism and do all they can to obtain the best services and bene ts available for Jordan. As time goes by and the family adjusts to their unique struggles, they are hit with another major blow. Just prior to reaching adolescence, Jordan is diagnosed with type 1 diabetes. All of a sudden, Jordans health issues are more than just social and developmental; they are now also physical. Yet amidst the devastating news and the extremely di cult process overall, the family continues to put their full trust in God.
Half My Life: e Testimony of a Father and His Special Needs Child began as just a poem composed by Jordans father. Years later, it grew into this biographical journal. Much of it was not planned out initially but written on the spot as thoughts and ideas came to the mind of the author and as memories and emotions lled his heart. It chronicles the adventures and experience, the highlights and the struggles, and the surprises and setbacks as told from the perspective of one of Jordans biggest fanshis dad.
The author will donate a portion of the proceeds to the following organizations, among others: Autism Speaks, the PADRE Foundation (for juvenile diabetes research), and the Tim Tebow Foundation (for kids in need).
Details of my book:
“Half My Life: The Testimony of a Father and His Special Needs Child By Joseph Lim
My book is now available on Amazon, Barnes and Noble, Kobo Books, and iTunes. Here is the publisher’s webpage for my book which contains links to all the major websites where my book is sold, as well as a YouTube promotional video trailer:
I also have a Facebook page for my book. From your FB account, search on the title, Half My Life: The Testimony of a Father and His Special Needs Child. Or try this link.
Please feel free to share this information, “Like” on Facebook, etc. Every little bit helps. Please help me spread the word for a good cause. You may contact me if you wish via email (email@example.com) or phone (909) 868-8144. Thank you, Joseph Lim