Archive for February 25th, 2009

Branden’s story

I find it incredible that I must defend the rights of an 11-year-old child. I find it absolutely offensive and sickening that I must further defend the rights of an 11-year-old child with a disability.

To add insult to injury, I am not defending him against a spiteful teacher or a malicious class bully but am forced to paint pictures of his hardships and future to our own government who feel that his life is not as significant as a “normal” kid in this society. Do I not have enough to worry about with trying to extend his life and make the hard choice to provide him with quality over quantity? Did you have to make that decision for your perfectly healthy child?

I want to walk you through the story of Branden Rivers, my pre-teen son who has Duchenne Muscular Dystrophy (DMD). As you take this journey with me I want you to keep something in the back of your mind for me…store it like a winter nut so that by the Springtime of this story (when new birth and new hope always emerge) you can examine the “nut” and hopefully gain a little more insight into what it is that you have been storing. Here is what I’d like you to store: We are all equal in the eyes of God. It’s a very simple concept, not new to anyone. Once you have thought about it, we can begin.

I will not attempt to purge every detail of Branden’s short life here as there is much to write and I really have a point to make. Rather, I will give you the highlights (and lowlights) and let you have a glimpse of what it takes to make it through his day and what his future holds. Feel free to comment on this story – I already know that there are people out there who will find something negative to say. I really do not care as you don’t have to live with him nor do you have to deal with him. What I do care about is that ignorance makes for bad decision making. My purpose here is to enlighten you about the other side of the coin – the innocents that are affected by overzealous people who may or may not have a hidden agenda. My purpose is to tell Branden’s story and let you decide.

Branden is a fraternal twin (not identical). His brother is an ox, perfectly healthy and built to carry heavy loads. Sadly, we did not think that his heavy load would be physical and emotional…in the form of Branden. They were big boys at a full-term birth; Branden was 7lbs 5ozs and Jordan was 6lbs 8ozs. They grew and thrived in a loving home with more toys than I could find place for and matching outfits that lasted only one use (I was adamant that they were at least in different colours of the same design).

As is usually the case with twins, parents tend to compare one against the other and any apparent lack of development is always cause for alarm. So it was with us when Jordan began walking at 11 months and Branden had not even begun to crawl properly. He did what I call a “combat crawl” using his arms to pull him around on the floor with one leg bent and propelling him forward. Naturally, I took him to doctors who explained the whole lazy baby, delayed development, nothing to worry about spiel. We were told to wait until he was 15 months and if nothing happened by then, we should worry. Well, he finally walked just shy of turning 15 months. What a relief and cause for rejoicing!

Let me pause for a minute to say this: As a parent we are heartbroken from the day we find out about the new life that has been created for us. Yes, there is extreme joy but our hearts break because we know that we cannot do everything for this child, cannot fix every problem or make it all right. Anxiety builds about what kind of parent we will be and what kind of challenges they will face and how they will be treated in life. We only want the best for them and secretly cry when they fall down, or are rejected by someone at school or lose the race. That pain grows exponentially when you have a special needs child. It is not fair! Why must this happen? He is only a little boy! He did nothing to deserve this! But through it all we still protect them. We are still their parents and they still depend on us to make it all right again. It is our job – what we were tasked with. God never gives you more than you can handle.

So let’s fast forward about 3-4 years. Branden and Jordan proved to be very active little boys. But there was always something a little slower about Branden’s movements. I let people joke about it but it hurt me deeply to think that there might really be something wrong. He was called “Forrest Gump” when he started Little League because his running wasn’t really a run at all but a slow motion fast walk with a funny (not haha funny) hip roll. He was called “Two Seconds Later” because whatever Jordan did, Branden could only duplicate with a delayed response that took about 2 seconds to begin…and much longer to complete. Family referred to his “bad leg”, which I hated to hear because you never want to face an imperfection with your child. He was called lazy because he just couldn’t climb those stairs that Jordan raced up and down on. When I had to choose who to chase and remove from immediate danger (because they always went in opposite directions!) I unfailingly picked Jordan because I knew Branden would take twice as long to reach his destination.

Then there was the falling down. He always fell down. We would laugh at his grandmother’s attempt to walk behind him with a pillow so that she could lurch forward and drop it in place to cushion his bottom when he landed. You laugh at things like this without the humour because the act in itself looks funny, but the dirty little underlying meaning is too serious to want to face. During all of this, throughout his first 5+ years of life, I took him to every doctor, every visiting specialist…everyone. The range of opinions was far reaching…and wrong. He got worse.

Finally when he was 6, we made an appointment to see another visiting specialist in pediatric orthopedics – this visit would change our lives forever. We were ordered to get a blood test immediately and on Feb 9th 2003 at 9am I got the call at work with the results – Muscular Dystrophy. I died that day. My hopes and dreams for my baby boy were sucked out through the syringe that pierced his vein and withdrew his blood. Ignorance is bliss and a very comfortable place to lay your head and disregard the real world. Knowledge is power and sharply yanks the spiked chains around our necks so that we are forced to confront everything painful, everything shocking and everything unequal in the world.

I cried bitterly for 2 weeks. Every time I looked at him it refreshed the tears. I cried for my loss. I cried for what his life would amount to – the deficit of his sum of parts. I mourned his death and planned his funeral. I got angry. I got quiet. I stopped eating, I overate. I resented his brother’s health, I resented his sickness. I was mad at God, I prayed to God. All the while, my husband said and did nothing. He was unaffected – as far as I was concerned…that made me angrier. In my own profound grief I was unable to understand the way he handled it. In the two weeks that I fell apart he analyzed every piece of information as is his way. He was my pillar until I could reason again. In the third week after his diagnosis I woke up and had a revelation. I could choose to sink into the quicksand of depression until the day he died and be utterly useless to him, my other son, my husband and myself or I could snap out of it and savor every minute that we were given and make the best of a bad situation. As I sit here today I can honestly say that I chose the latter but have revisited the quicksand on so many occasions that my footprints are permanently embedded in the path. Shortly after I emerged, my husband sank and we have struggled to pull each other up and out of despair like a wrestling tag team ever since.

Now here we are. Branden is 11 and in a wheelchair. He began to have more difficulty walking last year and required someone to walk beside him so that he could hold on to keep his balance. More often than not and with increasing occurrence, Jordan would simply sling Branden onto his back and the two would be on their way. It was more comfortable for Branden to have Jordan carry him than us as it looks more natural, as if they are two normal brothers goofing around and piggy-backing. Branden possesses a great amount of pride and abhors attention. He would rather fade into the background and be invisible than have people gawk and stare. It breaks my heart when insensitive people ask what’s “wrong” with him…right in front of him. I simply smile and say nothing is “wrong” with him, he is perfectly fine. He is just built a little differently. God chose to give him a bigger brain and had to use some of his other muscles to get the job done.

My husband and I decided in the beginning that Branden would know everything we did (within reason) so that nothing would come as a shock to him. We have educated him beyond his years. When most boys his age are out playing football until sunset, Branden is stuck on the sidelines with a head full of information explaining why he can’t do the same. Yet he has NEVER asked “why me”. When his brother has complained about having to take Branden somewhere or pick him up or retrieve a toy just out of reach, Branden’s response is, “Do you think I WANT you to have to do that for me? Don’t you think if I could do it for myself I would?” I walk away and cry in private because this bright little boy is so trapped in this body that is slowly deteriorating. Because long after he is unable to lift his arms or breathe on his own, his mind will still be sharp and his wit and quick come-backs will be forever lost behind lips that will not have the strength to form the words.

He does not complain. He tries so desperately to live a normal life. He has hopes and dreams and a crush that he’s had since he was 6. He picked out the car he will drive and designed the house he will build…when he was 8.He knows what he likes and defends his tastes vehemently. He vocalizes his dislikes with the fervor of a seasoned lawyer. He is a perfectionist and so creative that it puts some well known artists to shame. He wants to space travel and paraglide and jump out of a plane, all of the natural desires that most every 11-year-old boy dreams of. He loves his 2 year old sister, Amelia, unconditionally and beams so brightly when she crawls into his lap so he can wrap his arms around her and kiss her head. But at the very pinnacle of his list are two very important items that the rest of us take for granted: he wants to walk again – this time easily and freely – and he wants to RUN. Oh, and he wants to one day be able to pick his sister up and carry her on his back as his brother has carried him.

He had surgery this month (February) to snip his Achilles tendons and reattach them to help straighten his feet that were turning inward from the retraction of his calf muscles. He was not afraid. Never cried, never asked “Why me?” I cried, I asked “Why him?”. He went into surgery and never called after me as I walked away crying. He went as a brave soldier to war. His only words were, “I’m not a baby!” No, he’s not…he’s a big, brave boy but he still needs myprotection. He came out groggy but not crying. I cried. The nurses were amazed at how quickly he found his senses and how strong his constitution was to heal. He was released within hours, two brand new casts adorning his legs. Comments like, “Boy, you’ve had a bad day!” just make him smile. They have no idea.

He has been in physical therapy for years. It’s really only to prolong his ability to walk for a little while longer…we all know where this will end up. We are not living in denial – only faith and hope. Since surgery his therapy has increased to 3 or 4 times per week and his progress is outstanding. He knows what’s at stake and is fighting so hard to win. He is determined and focused and gives it his all. It is paying off. The strength in his upper legs is building and he is able to lift them a few inches now. That is a major event for us. Normal kids must do great feats of athletics to impress their parents; my son need only raise his leg an inch or two off of the floor. I am crying.

Over the past 11 years I have fought tooth and nail to protect him from ignorance and insensitivity. I have been forced to degrade my pride to tell our most private stories to complete strangers so that he can receive what he needs and deserves. His insurance was in jeopardy when I moved jobs – even though I have taken it with me as a private client, paying the exorbitant monthly premiums to ensure he receives the quality healthcare he NEEDS to live. I was told that only the government standard could apply to his pre-existing condition even though he was a client years before he was diagnosed – has anyone really evaluated what is provided in the most basic insurance coverage this country allows? It is not sufficient for a healthy person, how could someone justify giving it to my child? In the end, I found a human who would hear my case and help me fight for my cause. While he is not receiving the same benefits that he had previously, I will have to make do with what we were given as it is better than the ‘standard’ care he is entitled to as a disabled person.

We have had the same domestic helper since the boys were 10 days old. She is amazing! We treat her like a member of the family. I have often joked that I am the surrogate mother and they are her children. She loves them and they love her. She has been with us through EVERY major life-altering event that we have experienced in the past 11+ years. We sent her to the US for 3 months with my boys after Ivan while we stayed behind and repaired our island. She cried with us at Branden’s diagnosis. She is the only other human being (besides us, his grandmother andoccasionally Jordan) that he will allow to bathe him, help him use the restroom, wipe his bottom and any other private task you can think of. Every basic act that we take for granted he must rely on someone to help him do. There are only a handful of people he lets into his naked life…she is the only non-related one. She was facing the roll-over policy last year. We applied for permanent residency. It should not have come to that. There are exceptions to every rule…everything is NOT black or white. Someone in her position earns the right to be treated differently and judged on her contributions to a Caymanian family and merits of her unending service to us. I fought to keep her. WE need her…she does not need us. Branden needs her. I took the issue as high as I could go – to the LOGB – whose humanity and kindness helped us to open doors. There is also a very special person who must remain nameless but who was instrumental in resolving this dire situation.

I am so tired. I work full time to support my family (well maybe it’s really to support CUC!). I come home to a full time job caring for my children, one of whom happens to be in a wheelchair. I am fighting new battles everyday to ensure he and my other two have all they need and are not lost in the political upheavals and resulting sidewalk cracks.

If you are still reading this, I thank you for taking the time to hear our story. The rest will be my viewpoint on the current issues facing our country as it relates to Branden. He is my son. Let me write it again…HE IS MY SON, MY BABY, MY OFFSPRING. The future of the world does not depend on him, but the future of my family does. What happens to him could set the precedent for how people like him are treated.

I am a Christian. I believe in God and the Bible, His Word. I teach my children manners and morals and send them to a Christian school. I am offended that some feel that the average Joe Public is too unintelligent to know that the issue with protecting people like my son stems from the fact that they do not want to also protect the rights of gays. What else could it be? Am I to assume that there is a faction of Nazi extremists in Cayman that are influencing our leaders to weed out unhealthy undesirables so that they can once again groom a super race? A little farfetched, right? Or is that some powerful people out there really hate kids and old people and want to eliminate them once and for all…no?

As much as they would have us believe that this is not about the gays, it is surely the only reasonable explanation and fully explains the involvement of the Ministers Association to date. Remember that nut I asked you to store in the beginning. Stop for a minute and think about it. I find it puzzling that the section which deals with the fundamental protection of ALL rights of my boy is in jeopardy because we are afraid to grant that same protection to persons with alternative lifestyles. Let me stress…I do not condone homosexuality. I am not defending or protecting it. I shield my children from it…BUT I know homosexuals personally. I am even related to them. The ones I know are great people. Beautiful, loving and caring. They are people created by the same God that created Branden and you and me. Granting them basic rights will not turn Cayman on its ear. That’s why the Constitution must be structured in such a way to set out the laws for all who dwell here to abide by. If you are concerned about gay marriage, then make it only legal for a man and a woman to wed…wait, we did that already.

In the Constitution, my son is ‘labeled’ as a ‘Minority’ because he is in a wheelchair. He is not defined by his disability! He is defined by his smile, his intelligence, his love of mustard and the beach. He is special and loved and deserving.I am his mother, his lioness and I will protect him even against the people who are paid by this country to do the same. My protection is not just from bullies and insensitivities. It is also from laws and rules that seek to exclude him. How dare you judge him as subhuman and less than! Prisoners have more rights in this constitution than he will. Rapists, murderers AND child molesters. He is a CHILD!! He has been victimized enough by the unfortunate plight that he was born into. I will not stand by silently as we enter a pivotal point in the history of our islands and let one opinion of what must be done detrimentally affect his future…as bleak as that already is.

We have waited 37 years for a renewal of this document. We have never had a Bill of Rights. If we are taking the time to do it, let’s do it right. I have no problem being the burr in the butt of this process to ensure that one citizen gets his deserved rights. The intelligence we enjoy is God-given. The air we breathe is God-given…how can man be so presumptuous to attempt to take away rights from one creation in favour of another? Who made man God? Was my son created with less right to enjoy the air that you breathe? Is he less deserving of water and food, housing and education? For that matter, is ANYONE less deserving – gay or straight, old or young?

I attended the talk at the Family Life Center on Feb 19 and spoke out against what is happening with the Constitution. I heard the jeers and heckling of people from the church against opinions and statements made by those in support of the Human Rights Committee (HRC). It was embarrassing and disturbing that the very ones who should be tolerant of the human race, whom we feel should be nurturing and loving, were unruly and obnoxious in protest of issues that they disagreed with. I was reminded of the movie ‘The Passion of the Christ’ where they mocked and spit on Jesus – the same ones that followed Him and wanted healing from him. How disgusting that our leaders would encourage such behavior. It became a competition of who could invoke the loudest applause or cheers.

It comes back down to black and white. You cannot expect it to be a clean cut and not have others affected. You cannot discriminate against the gays and protect the children, the elderly or the disabled. Why not? Because of society’s need to neatly label everything, we feel it necessary to plop people into categories to refer to them as a whole. Then when we try to write Constitutions and Bills of Rights we are faced with the sad decision to pick the better of two evils. In this case, we must protect our country from the big, bad, evil gay people and their unholy lifestyle and sacrifice the future of the children that will grow up with their own learned discriminations and issues. We are a nation founded on the Bible and its moral teachings – one of which is to love thy neighbor as thyself. Nowhere does it say that we must discriminate against anyone or take their rights away?

WWJD? What would Jesus do? I have a good idea of what He would do based on what the Bible says He did. Here was a man who dined with tax collectors and sinners, forgave prostitutes their sins and rubbed elbows with lepers and the diseased…all to the chagrin of the elected officials and holy men. He knew that they needed his attention more than the rest as He was sent here to heal the sick and set the sinner free. He did not condemn them or criticize them. He loved them into His confidences and taught them what He wanted them to know. They listened intently because He earned their trust and their love. More flies to honey than vinegar, so to speak. I am not accusing our religious leaders of being Pharisees, I am merely drawing references to bygone times where similar mistakes were made in the name of God.

I feel I must also defend my stance against recent comments passed by a certain member of government who is very close to this process. That he would have the audacity to infer that I and persons like me have been manipulated by the HRC to feel the way we do is insulting. I will describe myself as a self-proclaimed person of reasonable intelligence and as such, can make heads and tails of a variety of complicated things. It is with MUCH appreciation to the HRC that I am able to fully comprehend the nuances of Section 16 and of course the limitations. At least someone has taken the time to break it down. I have listened intently to the debates and read the articles and formed my own opinions. It’s quite simple to do really and often mitigates the danger of being misled. I find it laughable that the statements coming from government are that Sara Collins has a hidden agenda…of what? As far as I know she has perfectly healthy children, is married…to a man, doesn’t have any seriously ill, disabled or elderly people in her family and is not a homosexual. Could it be that she is a humanitarian? I do not know if she is a Christian or not but find her stance and fight to be of noble intentions and answering the call of WWJD. She is championing the underdogs…something our government is meant to do. She is taking on a fight that will not make her popular, will not pad her pockets nor will it give her rest. Why is she doing this? Because…it…is…the…RIGHT…thing…to..do! Remember that nut..?

Our government has publicly stated that it saw no need to translate everything to us little people as we are obviously too dumb to get it. Never mind that we are the targeted audience,the very ones that the document is written for and, it goes without saying, the ones to whom the election candidates primp and pose every 4 years…

My involvement in this process is purely selfish and personal. I have no need of someone’s agenda as I have more than enough to occupy my days. I appreciate that there is a flipside to the coin, there always is. For me it is very simple: my son deserves the world. I should not be put in the position to explain why Jordan has a free access pass through life and Branden must make do with crumbs. He has already suffered and it is the responsibility of our government to ensure that he is not victimized further.

So here is the Springtime of my writing. New hope, new birth, changing of the old guards. Take out that nut and plant it so it can grow. We are all equal in the eyes of God. Whether we are infirmed, old, young, funny…we all deserve to live in a better world.

As for our story, let me just say that I have hope never-ending. I have lived on the internet since 2003 reading everything I can about DMD. There is hope in so much research out there. I feel confident that the cure will come in Branden’s lifetime and only pray that he will benefit from it. The US has a new president who is all about change. Stem cells are a major part of that change. I have been storing Amelia’s umbilical stem cells waiting for the time that scientists will be able to use them to heal Branden. That reality is not far off.

Regardless of the outcome on May 20th, I will continue to be Branden’s mother and as such will continue to fight for his rights. My voice will be heard and his story will be known. The broad definition of ‘Minority’ encompasses people. People with lives. Lives that have meaning. They should not be written out of a document that means to discriminate – that is just UNCONSTITUTIONAL!
 

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