"Jete Li" and more

Just a warning…this post is very scattered and encompasses the ramblings of my mind in no organized manner. I am asked frequently and have been for years why I do not post more often. OR I am asked why I do not post with full vulnerability and transparency. I never have a good response to these questions so I tend to say, “I am just too busy these days”.  But in reality, it is really because I do not know how to respond. I simply cannot develop appropriate sentences to convey what my feelings and emotions want. No words will fully suffice what is on my mind and in my heart.

I feel like this will be a blog of a countless amount of discombobulated words possibly impossible for any human brain to sort out and make sense of. None the less…here are my ramblings….

“Jete Li”. In English, “throw him/her/it away”. This is a term I hear a lot, sometimes weekly, sometimes daily. “Jete li”. My heart is shattered into a million pieces each and every time I hear those words. This phrase is a common occurrence due to parents/caregivers being told to throw out their child if he/she has a disability or special need. Literally, they are told to throw their child away…to get rid of him. Parents hear this from doctors, family members, community members, and strangers passing by.

Imagine having a son with Down Syndrome and the first thing that is said to you after delivery is “He’s no good. You need to get rid of him”. Imagine bringing home your precious daughter who has spina bifida or cerebral palsy and the first thing your family says is “She’s ugly, give her away. We don’t want her in our family”.  Imagine hearing these comments on a daily basis if you choose to keep your child that you love unconditionally regardless of the presence of a diagnosis.

Unfortunately, this is reality for so many that come to the therapy clinic with their child. Looks of defeat and hopelessness overwhelm a parents face when arriving to the clinic for the first time while carrying their beloved children. We invite them in with welcoming arms and accepting conversation, and it is as if they are soldiers coming off the front line bloody and beaten and are finally able to sit and breath for the first time in a long time. Sometimes for the first time since their child was born. Countless times, a parent looks at me with tears in her eyes as she quietly states with a sense of shame, “will you take my child? I cannot keep her?” Each of those words and each tear is a dagger in my heart being twisted with greater force each time. As I feel her pain enter into my soul, tears form, and I gently place my hand on her shoulder and I tell her “You can do this. We will help you do this”.  Minute by minute you can see a glimmer of hope slightly emerge from many. Hope does not always peak its head out quickly, but oftentimes, I get a little nudge from God that gently assures me it is coming. As a parent sits in the therapy room for a short time, she is able to see other kids and adults receiving therapy and more importantly she is able to connect with other parents. As conversations ensue, fear slowly escapes her soul and a small smile gradually forms. Again, some parents take a little longer than others, but when that genuine smile first emerges my soul bursts with joy, as I know God is at work within them. And a lot of times within the first visit to the clinic, parents are able to gather up enough strength and courage to return to the next appointment. This turns into weeks of showing up for appointments and then months.

Strong and courageous are two common adjectives in my vocabulary to describe the parents and caregivers I have the privilege to work with on a daily basis. I have carried patients up and down the mountain and along the main road…and I have endured the stares, the hateful comments, the tormenting taunts, etc. All because the child I was carrying had a disability. The parents endure this each and every time they step foot outside of their house. The child hears those words and sees the actions of others every single day of their lives. Parents try to protect them, but it is unavoidable. To bring a child with sa disability out of a house and move around in the community let alone travel to other communities takes unimaginable courage and strength. It is so much easier to hide the child and to pretend like the child does not exist, which is still a very common occurrence. But the parents that bring their child to therapy do so regardless of the comments and the stares. And you know what, the majority of the parents are so proud of their child that eventually when those comments are thrown their way, they show off the kid and respond joyfully and gracefully…and now even throw education at those who satan puts in their path. 

I am going to rewind a bit to when I first started the therapy program back in 2015. I had only been in Haiti for a short time when God first laid it on my heart to start an actual therapy program and not just see a handful of kids. I was extremely hesitant as I thought, “how in the world am I going to start a therapy program?? I don’t know how to do that…I won’t be good at that, no way.”  If you read previous blog posts, you will get more of the story of how this all unfolded. But during the initial stages, God sent so many amazing parents who wanted to share their stories with me. Yep, you’re probably thinking, “why Ashley?” I was thinking the same thing, “why me?” I do not have kids of my own let alone a child with disabilities. I had never started nor run a therapy clinic and had no idea how to even begin. But there I was standing in the medical clinic with groups of parents and kids listening to them pour their hearts out to me…a complete stranger. As they talked, I began to learn so much about the special needs population in Haiti and even more about the parents who courageously choose to keep their children. I wish I could type out all of their stories and share with everyone because they are absolutely painfully beautiful, but I would need a thousand pages to do so and I am assuming most of you are getting a little bored with my ramblings just in this one blog post. But, these initial stories and that phrase “jete li”, were the building blocks for the parent support group that was started in mid 2015. The foundation of the support group is unfortunately solidified by the pain and hurt that parents and families have endured.

Belo was so confident in starting this group, but I was fearful because I had zero confidence in myself to prepare for and run a support group for parents who have been through so many hardships that I could not even begin to comprehend. But God. He built this group and He was and continues to be the leader of the group. I stepped out of my flesh and right into the arms of the Lord. I prayed for him to guide me through the preparation and the implementation of group and He did just that. God has used the parent support group not only to support the parents and families, but also as an educational avenue for me to dive deep into a culture that is not my own. Through that, I am better prepared to encourage and empower families and patients on a daily basis. Just thinking about this brings tears to my eyes as I think about how beautiful it is that God prepares his soldiers perfectly in order to fight His battles. So group started and still continues today…

In parent support group, the stories that are shared are heart wrenching. I tend to not share these stories with many as I try to respect those that openly share their personal lives in a private setting. For many years I have prayed for discernment regarding how much to share, to expose.  Recently, one thing that has been weighing heavily on my heart is the fact that I am here in Haiti to not only hear and live the stories of these strong, courageous parents, family members, and caregivers, but also to share these stories so the disability population and their families no longer go unnoticed, no longer go unheard. God wants them to be heard and prayed for and loved. Their voices need to be heard because they are powerful!

Proverbs 31:8-9 – “Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy”. God laid this scripture on my heart many years ago when He first gave me that little nudge to start a therapy program. Sadly, I have been failing at this. I have not been advocating to the extent that God wants me to advocate. They need to be heard. They are all precious children of God and he wants his children heard and loved. Sometimes God calls us to stay silent in a fight, but other times he calls us to scream and shout and fight for justice and equality. So here I am to scream and shout for his beloved people. (and I want to explain that this verse nor my words mean that people do not have a voice and need someone to actually speak for them, but rather, sometimes support and encouragement is needed for one to USE their voice with confidence...)

Read a few snapshots of stories that I have encountered over the years…some may be hard to read, I left out the worst stories, but let this soak in a bit….

- A mother of a baby diagnosed with Down Syndrome – the doctor told her that her baby was no good and to get rid of her immediately. Mom took the baby and ran before any one could intervene and take her baby from her. Her decision to keep her precious baby resulted in domestic abuse prior to her and the baby being abandoned by all family members including the father of the baby. They were left to survive on their own.

- A dad who has a child with cerebral palsy. Mom decided to listen to those around her and left because she believed she was to blame for her son’s diagnosis. She was told the cerebral palsy was a direct result of her sins. The dad is no longer able to work because he has to take care of his son. Now they are trying to survive in severe poverty.

- The mother who desperately needs a little respite, but no one is there to help care for her child. She knows that if a family member were to care for him even for an hour or two, he would not be properly taken care of or worse and fall under the hands of an abuser.

- The mother who did allow a family member to take care of her daughter for just 2 hours only to come home to find her child sitting in a soiled diaper while a person is forcing feces into her mouth as a punishment

- The mother of a 7 year old child who is 19 pounds and has cerebral palsy but she has no means to care for him…and all options provided to her fall through due to her own mental illness.

- The mom and dad coming in with a baby with severe hydrocephaly…their first question, “is our baby going to die?” They ask this with tears in their eyes because their first and only other child died due to a heart condition that was not treatable in Haiti…and you know the reality of the situation

- The parents who end up walking a far distance carrying their child because public transportation (tap taps and motos) will not stop to pick them up because the child has a visible disability

- The parents of children who have diagnoses that are relatively easily treatable in the United States, but in Haiti, if the child is not severe enough then he will not receive a needed life saving surgery…and if the child is too severe, then he will not receive a needed life saving surgery. Us being left to explain this

- The mother who was told by many doctors and an orphanage that her child was no good…and her breaking under the pressure of the lies and deception resulting in her decision to throw her precious child over a bridge to a waterless ravine that was home to wild hogs

- The mother who has thoughts of suicide and/or thoughts about killing her child because the pressure placed on her by her family and community to give her child away is just too much to bear sometimes

Story after story of heartbreak and sadness – many stories are too disheartening to put into written words. But one thing that is certain, the need for therapy and mental health intervention is extremely high and never ending. Daily, individuals show up at the clinic seeking out services. Sometimes, even begging for assistance. Unfortunately, the demand is so great, that we cannot match all the needs. We simply just cannot. During the clinic day, I disconnect from my emotions because sometimes it is just too much to bear. A little piece of me is chiseled away each time we add a person to the waiting list. The reality of that list is tough…kids have passed away, moms have been abused, families have been broken apart, neglect, starvation, etc. It is all occurred. I am often finding myself thinking, “what if? What if she or he was given services sooner and not put on the waiting? What if?” I cannot get stuck in the “what if’s” in life, but it is hard to not let myself go there. It is hard to not carry all of this on my shoulders. It is hard to not to think that I am not fighting HIS battle well enough. It simply is just hard sometimes.

I want to end by saying…there is also SO much joy and happiness that occurs daily in the therapy clinic. Aside from a few crying patients, you will often hear laughter and cheering seeping out of the hallway of the therapy rooms. We strive to provide a space that overwhelms one with a sense of safety, acceptance, joy and love the minute the threshold is crossed. On the walls you will see pictures of current and past patients. You will hear worship music blaring while patients, staff, and families sing along to many of the songs. You will witness first hand tears of joy as a new milestone is achieved. You will hear so much conversation amongst parents and families that it is literally deafening at times. Overall, within the walls of the therapy clinic, you will see God fervently at work protecting his people by fighting of satan’s tactics. The special needs population in Haiti is truly the “least of the least of these”…and each and every victory really makes satan angry. And boy does he go on a violent rampage attacking in every way possible. But God. God is way bigger. 

and a very random side note...the post titles on my blog have all of a sudden changed to blue? I really want it back to the original color, but cannot figure out how to so if anyone has any knowledge on this, please pass it along to me :)