A Missing Piece

Recently, I was posed the question, “what is the most important aspect of the therapy program?” My response was immediate and the person asking was caught a little off guard by the response. My response was along the lines of “the most important aspect has been the weekly parent support group”. Observing the person’s reaction, I realized that maybe this was not the expected answer for some reason. I suppose maybe an answer along the lines of “the children sitting or standing or walking for the first time” or something similar to “the children gaining independence” or “the children being shown love and care” or maybe even “the children having access to something they have never had before”. While all these things are extremely important and a huge part of the therapy program, I have come to realize that the MOST important part is pouring into the parents (I will use the term ‘parents’ from this point on, but this encompasses caregivers and families as well). Giving support to the parents and showing the parents love has been the MOST important aspect of the program thus far. I could share many examples of this; however if I started writing all of them, I wouldn’t be able to stop – and I am not looking to make this post into a book. I’ll get back to the parents here in Haiti in just a little bit….

I sat for many nights wondering why my response was such a huge surprise. Why was it such a shock that support group has been the most important aspect of the therapy program? Then I realized that many times, the healthcare system in the US is missing a piece to the puzzle. Maybe I should narrow that statement down to focusing on the therapy world of the healthcare system…but I am sure it can be applied to other medical fields. I think that sometimes we get so focused on the patient and tend to leave out the parents and/or family. Of course, we educate the parents and provide home exercise programs and include them in goal setting and the treatment sessions, but we miss the bigger, much deeper piece. The bigger piece…the missing piece…is providing a strong support system to the parents – encouraging them, educating them, and empowering them on a DAILY basis. And this is not the whole “you can do it” attitude, but, rather, the whole “I want to know your struggles and hardships in caring for your child and more importantly, I want you to know that God loves and cares for you and He is with you every step of the way”. Yes, in the states parents have access to so much, but where is the daily spiritual support that is geared specifically towards raising a child with special needs? Where is the daily emotional support without having to pay an arm and a leg? It’s not always around due to being so focused on the child. Sure, there may be emotional and spiritual support during difficult times, but that support needs to be present frequently and consistently. 

Here is Haiti this is a need on a much deeper level. Individuals, children, with disabilities are not accepted within their communities or even their families. The words that are used to describe this population translate as the following: ‘non-human’, ‘possessed’, ‘cursed’, ‘crazy’, ‘idiots’, and everything in between. It is common for parents (especially mothers) to be blamed for their children’s disabilities. 

It is a heartbreaking reality that many parents give their child away or abandon their child. It is a heartbreaking reality that there are doctors that encourage this or even encourage the death of a child. It is a heartbreaking reality that it is a common daily struggle as a mom thinks, “maybe today I will leave my child somewhere”. It is a heartbreaking reality that when a majority of parents bring their child into therapy for the first time they have the intention to leave their child their. It is a heartbreaking reality that oftentimes I do not see a smile on a parent’s face for months. But I will be the first to tell you, that it is a God thing when I do see that smile. 

That is just it. It is a God thing. God is doing amazing things in the lives of not only the children receiving therapy, but the parents of these children. This is why support group has been the most important aspect of the therapy program. Through this group, the parents are provided a safe, nonjudgmental place to openly discuss daily struggles. It provides a place for parents to receive education on diagnoses, therapy, mental health, etc. It provides a place for open discussion of voodoo and cultural beliefs surrounding the disability population. Most importantly (and I must say the favorite amongst the parents), it provides a place where they hear about God and what the Bible says about disabilities. 

There are many group sessions that have been extremely powerful and will forever be embedded in my heart – 

The group session where a mom came to group for the first time and initially looked petrified, but left in tears because she never had talked about her child and had people actually listen and smile and tell her that her child is loved by them and God. 

The group session where parents went around and shared stories of what people say and do to them and their child – some specifics are much to difficult to share – and witnessing relief and hope on parents faces after sharing and getting out stories that they had never spoke about before.   

The group session where a parent heard for the first time the truth about God’s love, mercy and grace and even through her tears you could see her eyes light up.

The group session where a mom stated she did not want to attend group that day because she had decided the night before that she would leave her child somewhere the next day even though she dearly loves her child…but then she said something told her to come to group and after diving into a few Bible verses she fell into tears saying that she was so glad she attended group and she was given just enough hope to hang on for another week. 

I could go on and on. But the reality is, supporting the parents has been the most important piece of the puzzle to developing a therapy program. For some reason, God has placed me on this journey – I’ll be the first to tell you, I am not the best at this nor will I ever be and even though it confuses me sometimes, God has put me here and for now He is telling me to pour into the parents and love them as Jesus loves them.

A Dad Holding His Child

Every week, Belo and I run a support group for parents who have children with special needs. I do not typically disclose what is discussed within support group in order to maintain confidentiality and respect for those who participate in the group. But this story needs to be shared as it is a story that display God’s mercy and grace. It is a story that can maybe provide hope to others’ or even just put a little smile on another’s face.  

Last Friday we discussed the question of “why does God allow disabilities and why does He not heal everyone”, as I looked around the room I could see the pain and confusion in the eyes of most of the parents sitting there and the silence was deafening. None of them knew how to answer that question even though we discuss it often. They want to truly believe that there is a purpose for EVERYONE even their children who have special needs, but their community, their families all say otherwise….and they hear negativity on a DAILY basis. These parents deeply love their kids, but man, life here would be a whole lot easier for them if their child did not have a disability (more on this in a future blog post!). But then I noticed one parent. This parent was holding his precious little 15 month old little girl. (Side note: children typically do not attend group, but due to a scheduling conflict she came to group last week). I noticed he was looking at her with a huge smile on his face. He then looked around the room at the other parents and he raised his hand (how sweet?!?). The words out of his mouth brought tears to my eyes and joy to my heart….he said, “I know why God gave me her. I have 4 others kids, all older than her. And she is the first one that I have ever held. I didn’t help with the other kids and I never held them, but her, I have to because of her disability and my wife isn’t good. And I thank God every day for her. I love holding her”. WOW! 

Through the hardships that this father endures - poverty, the death of a child in the earthquake, a wife that struggles with depression and PTSD, lack of steady employment, a child with a disability - he thanks God everyday for giving him his precious little girl who is diagnosed with Down Syndrome and malnutrition. 

I often hear horror stories about how individuals with disabilities get treated. The things that are said to them and about them are difficult to even repeat. But there is hope in EVERY situation...sometimes that hope comes simply from a parent holding his child. 

The need for therapy here in Haiti is so BIG and it is never ending. It comes along with the HUGE need for education - not only parent education, but education for the ENTIRE community. Some days it would be easier to give up rather than to try to meet all the needs - not only the physical needs of the kids, but the emotional and spiritual needs of the kids and the parents/caregivers. But stories like this one keep me going on a day to day basis here in Haiti and I am deeply blessed by each one! 

***shared with dad's permission :) 

Updates!! Lots of Updates!!

So much has been going on here in Haiti. I will do my best to provide a “quick” summarization on all the amazing things that are happening.

Therapy

To date, 51 children have been evaluated. On a weekly basis ~40 children receive one-on-one therapy. The parents of these children are regular participants of therapy sessions. This has allowed for education and provision of home exercise programs. It is amazing to watch the transformation of the majority of these parents – initially, many come in with a flat affect or are in tears because they have been told so many times that there is no hope for their child. BUT as therapy goes on, their demeanor changes completely – we now see smiles and hear laughter. Parents are now excited to learn ways to help their child and are often eager to complete activities within the home environment. Time after time, parents now tell me how happy they are and I see a sparkle of hope in their eyes. This is what keeps me going. Each time I turn to God and say “thank you”.

In order to allow an increase in patients, two employees have been hired. We now have a Haitian Physical Therapist who received her degree in the Dominican Republic and a Haitian Rehabilitation Technician who received her degree in Haiti on staff. Both are AMAZING!!! We have been able to complete all evaluations and all one-on-one therapy without the need of a waiting list.  We also have a little room for growth, which is reassuring, as we do not want to require a waiting list! I have personally been so extremely blessed by both and continue to be in awe of the ways God provides.

Supplies and equipment have poured in. We are extremely blessed by the continued support. We have a supply of orthotics and tennis shoes that can be adapted to best fit each kid in need. We know have equipment such as various sized therapy balls, a treadmill, exercise bikes, mini trampoline, and toys/games. This has allowed for a variation in treatment strategies and activities and the kids have thoroughly enjoyed all the new, exciting stuff!

NEW BUILDING!!!! After much prayer by so many, 2016 will be the year that construction on a building for therapy services (PT, OT, and mental health/counseling) will begin. No date has been set and funding still needs to be fully raised; however the process has begun – we have full faith that God will provide. This is exciting in so many ways. The mental health program will now have a place of its own – and it will provide a PRIVATE and safe environment for one-on-one counseling sessions as well as space for group therapy. PT and OT (hopefully one day speech therapy as well!) will have a larger space to work which means more kids can be seen and it will allow for groups to happen such as group therapy, educational sessions for parents and staff, and hopefully, one day, educational sessions for the community. All of this also means that, in the future, more Haitian therapists could be employed. A new building means more children achieving independence, more people improving their mental and spiritual health, and more job opportunities. This is HUGE!

Child Sponsorships

Child sponsorships for therapy patients have begun. Sponsoring a child is just $30 a month. This funding will allow for testing to be completed (xrays, labs), surgeries to occur, and financial assistance for families to help with transportation to/from therapy. Funding will also help with purchasing needed supplies/equipment.

Support Groups

Just recently, in conjunction with the mental health program, support groups have begun. One support group is for the parents of children who are receiving therapy. A second support group is for those parents who have children in the special needs classroom at Respire Haiti. These support groups not only allow for parents to get to know one another and develop a support system amongst them, but they provide education on specific diagnoses. Education is highly needed, as many myths and beliefs surrounding disabilities exist in Haiti, which place a negative view on not only children, but also adults who have a disability (more on this in a future blog). The support groups allow a safe environment, free of judgment, for parents to be vulnerable and ask questions. The groups provide a place where God’s love and grace and mercy are shown. The parents are hungry for this!

FSRL and HAOT

The first ever OT program began in October of 2015. The FSRL is the Faculté des Sciences Réhabilitation de Léogâne. This program is within the Episcopal University of Haiti and includes a 4-year Occupational Therapy degree program. Until October, there were NO occupational therapy degree programs available within the entire country of Haiti. The rehabilitation field is lacking and is almost non-existent in Haiti. In a short 4 years, the first EVER Haitian occupational therapists will graduate from a university within their own country. This is HUGE for the country and for the further development of rehabilitation services within the country. And this leads to the HAOT…

The first ever OT association in Haiti has been developed. This is beyond exciting – for the profession of OT as well as for Haiti. Haiti is now recognized by the ACOT (Association of Caribbean Occupational Therapists). We have elected officers for the executive board, developed the constitution and by-laws and are well on the way to be accepted and recognized by the WFOT (World Federation of Occupational Therapy). The association currently includes 5 members and 1 honorary member – it was determined that there are currently 6 full-time Occupational Therapists working in Haiti, only one being Haitian, 3 from the states and 2 from Chile. This exemplifies the NEED for occupational therapy within the country. The HAOT will further the process to get the OT program accredited by the WFOT, which would be AMAZING!!! Prayers for this are appreciated!!

Special Needs Health Fair

October 6^th marked the first ever special needs health fair in the community of Gressier. The fair was hosted at Respire Haiti; however individuals from 6 different organizations came together to organize and run the fair. The day of the fair, 47 children received full therapy evaluations, were seen by physicians, and were able to enjoy many educational and fun booths (hand washing, nutrition, therapy ball use, fidget station, bible study, coloring, etc).  For hours, these kids received nothing but love and parents were given hope, some for the first time. It was a blessing to witness.

October 7^th and 8^th served as follow up days where children came to HHM (Haiti Health Ministries) to receive any needed equipment. Over the 2 days, 8-9 buckets chairs were fabricated, over 15 standers and walkers were constructed, and MANY pairs of orthotics were fitted. So many children have now reached a new level of independence that parents never imagined possible. The highlight of the 3 days was definitely witnessing these families leave with nothing but happiness beaming from their face after entering with no hope, no smiles, and no laughter. A little glimmer of hope can change a person’s entire life. God continues to amaze us all as He continuously provides for the most vulnerable – children with special needs.

Construction of Equipment

Respire Haiti therapy program was blessed by receiving all the left over supplies and all tools after the special needs health fair. With these donations, all current therapy kids have been able to receive bucket chairs, Haitian adapted chairs, standers, and walkers. So many families have been blessed by receiving this much needed equipment. So many children now have more independence within the home environment. I have had the pleasure of beginning to teach the rehabilitation technician and physical therapist how to utilize the tools and how to construct the equipment. They have been thoroughly enjoying learning this new skill. Recently, we have begun teaching a therapy patient how to measure and cut the PVC pipe as well as glue the pieces together. This teenager, a 15-year-old boy, is now learning a new skill and has loved every minute. His smile says it all – and again, I am in awe of God’s work here.

Special Needs Classroom

Currently, Respire Haiti’s special needs classroom is operating out of the medical clinic. This is not the ideal setting for a classroom especially for a special needs classroom. The GOOD news is 2 brand new classrooms are in the process of being built. In January 2016, the children and teachers will move into their new space. They could not be any more excited. Change is coming and these children will now have their own space and will receive the education that they deserve. The teachers will now be able to use their skills more efficiently. In addition to the new classrooms, a second teacher’s assistant has been hired and will be starting in January 2016. This assistant is one of the mother’s of a child in therapy. We have been praying for another assistant and God brought her to our attention many times. She displays the compassion, love, patience, and understanding that is needed to fill this role. We are beyond blessed!!

Whew! That was a lot…however there is SO much more to stay about each thing! I will continue to do my best at providing updates. 2016 is bringing so much change and we are all so grateful for God’s provisions. He is at work here on a daily basis! His love, mercy, and grace never go unnoticed.  

(I will post pictures SOON…internet is not cooperating right now)

Philadelphia - Round Two

I have sat down many times to write many stories and updates. However, these stories never make it any further than the hard drive on my computer. I never seem to make that extra step to actually post what I have written. Maybe it is because some of the stories are meant to be just for me; however other times, I just don’t find the energy to plug in the Internet and wait for my blog to pull up on the screen. And to be honest, sometimes I just worry that what I have written is not “good enough” or not “worthy” of others’ time to read. I know these are things I should not worry about…but it’s true. Written words could never capture the emotions and feelings that are experienced first hand. But any update is better than none. So now I will spend time posting updates…there are many so please bare with me with the amount of posts that will ensue (hopefully)…

Philly – Round Two!

(originally written in September 2015)

August 16-29^th was trip #2 to Philadelphia for Caila and I. This time, the trip was only two weeks. Caila had a few doctors appointments and daily therapy scheduled. Even though the trip was short, Caila was still a little nervous and did not know what to expect. After a long day of travel, we managed to arrive at the Ronald McDonald House without any major issues. We were so thankful that a room had opened up just in time for our arrival that day. Although we stayed at the same Ronald McDonald House on our last trip, I noticed Caila was apprehensive as we pulled in. However, once inside, I could see a little relief in her face as we saw some familiar faces. These faces were of two children and their families who we had spent ample time with during our previous stay in Philadelphia – she did have some slight confusion as to why these same kids/families were still living in this random house that is for strangers to live together for short periods of time…ha! Anyway - to much joyfulness, both children were standing tall with assistance from forearm crutches – both children were also once told that they had a slim chance of standing and walking again due to spinal cord injuries. At the exact moment that we walked into the house, I had a view of Caila and the two other children and immediately my heart smiled. In that exact moment I saw God. Three children who were NEVER supposed to walk again were standing, walking right in front of my eyes.  It was as if God was standing behind each one of them holding them up. Nothing is impossible for God.

AS I fought back tears, we got checked in and headed to our room for the night and prepared for the next day. Our routine the next morning was exactly the same as in February and March and seemed as if we had not missed a day doing it even though it had been a little over 5 months. It was as if we had never left. The doctor’s appointments were filled with nothing but good news and praise. Caila continues to amaze all of her doctors. Her physical therapist was no different. No one thought she would be where she is at today.  Even other patients and families who we had met previously were truly amazed at Caila’s progress over the past 5 months. It was so heart warming to hear everyone’s kind words and to see the excitement on their faces as they watched Caila walk…without assistance. God placed each one of those people specifically in Caila’s life – and my life – to encourage her and cheer her on. I am so blessed that there have been so many people placed in her life to be her support system away from her home!

Caila received the amazing news of needing to come back in ONE YEAR!!! Not 3 months, not 6 months, but a year. This is awesome news.

We have been back from Philadelphia for about 2 weeks. Caila has NOT used her forearm crutches since we have been back. When we got back from Philly; she put the crutches in her house and has not touched them since. Every time I see her walking around I get tears in my eyes. Knowing what could be versus the current reality is something that we all think about from time to time. There is no denying that our minds wonder to the “what if’s” in this situation. But our God is far greater than we could ever imagine. Our God is so good.

The latest skill Caila has begun to master is JUMPING – take a second to watch the video. Caila is JUMPING. Eight months ago, Caila could not move her legs and definitely could stand or walk. Now, she is jumping!

I cannot say it enough...GOD IS GOOD!!! 

Jeremiah 32:27

(Quick background: Caila received scoliosis surgery in late July 2013. Post surgery she was medically deemed paralyzed – no sensation and no active movement. Caila and I traveled to Philadelphia in February for therapy. This was written shortly after our return to Haiti in early April)

Prior to leaving Haiti to travel to Philadelphia, I was asked multiple times “will Caila walk again”. I often replied with something along the lines of “I do not know. Science/medicine says no.” I could always see the impact of that answer and I always immediately felt like the pessimistic or the one who did not have hope or faith. I never was without hope and I never was without the belief in God’s power. But at the same time, I could not answer such a loaded question. It was not humanly possible for me to answer that question with a “no” or a “yes”. Perhaps I should have answered a little more profoundly; however this answer was almost a reply that automatically came out of my mouth without me thinking due to the amount of times I was asked, “will Caila walk again”. The truth of the matter is, I knew in my heart (and mind) that if Caila were to stand again, to walk again, it had to come from God. God’s miraculous healing would have to be part of her story. God has a plan for Caila and His plan would/will unfold in His timing. Just as He has a plan for all the children I have had the pleasure of working with, just as He has a plan for you, and just as He has a plan for me. We can spend countless hours trying to figure out His plan and trying to answer questions such as “will Caila walk again”, but that is all pointless and brings only worry, fear, confusion, etc. into our lives. Of course, it is our human nature to try to analyze every situation that is thrown our way when all we really need to do is spend all those countless hours in prayer – talking to God and listening to God….

On February 7, Caila said her goodbyes to her mom and aunt with many tears being shed and off we went. After 3 weeks of being back in Haiti, I was headed back to the airport to catch a plane heading to the US. This time I was headed to a different destination with a whole new purpose with Caila in toe. I could tell she was a little nervous…okay maybe a lot nervous. I would be lying if I said I was not a little nervous too. After all, Caila and I really had only known each other for 3 weeks and here we were about to embark on a difficult journey together. As we sat on the plane heading to our first stop, Miami, I fell into prayer. Prayers for Caila. Prayers for me. Prayers for my relationship with Caila. Prayers for God’s Will to be done in her life. Neither of us knew what was to come....

Day one of therapy came after a few doctor’s appointments, hospital admission, and lifted restrictions. I was not prepared mentally nor emotionally what was to come in that first session of therapy. I sat in the background watching Caila nervously follow all instructions from the therapists. After baseline measurements and assessments were completed, I heard the therapist say, “now we are going to stand”. Caila's head rapidly turned towards the therapist with her eyes conveying the message of “you want me to do what?!?”. Caila shook her head “no” multiple times. Then without hesitation, she pushed through her legs and stood. She stood up with minimal assistance on the very FIRST day of therapy. I could not make eye contact with anyone in the room as my eyes filled with tears and my heart began to race. I took a hard swallow and tried to prevent the tears from falling. I am sure my eyes were wide opened and my jaw dropped. This was the moment I knew in my heart that a miracle was unfolding….right before my eyes. Her smile says a million words!

Within 15 minutes, Caila was standing with assistance in the parallel bars. What happened next is something that plays over and over in my mind frequently. I cannot put it all into words…or at least words that can justify the emotions that every one in the therapy gym felt. Caila, on her first day of therapy, took a few steps. Yes, these steps were assisted…but she TOOK STEPS, one leg in front of the other. 

As the days progressed, Caila began making progress in an unbelievable pace. Each and every day, Caila added a new skill….as well as another day added to our “5-week” trip. Caila began with 2 people assist, then a walker, and then forearm crutches. Before I knew it, before I could process what was happening, Caila was getting on/off the floor, navigating ramps, walking up/down stairs, cruising around during therapy with minimal assistance, etc. I was enthralled on a daily basis. Watching Caila during therapy was something I looked forward to each and every day. I was trying to make sense of something that was unexplainable using scientific/medical knowledge. It was “simple” – she is a walking miracle.

https://www.youtube.com/watch?v=PpLFfOFKViE

As I sat many mornings, afternoons, and nights listening to Caila sing along to worship music, I couldn’t help but feel my heart smile. I do not know if she truly understood each and every lyric, but I do know that God is working in her life. Not only in her physical life but also in her spiritual life. I couldn’t help but to spend so many moments wondering if Caila will ever know the impact that she has had on so many peoples lives throughout her journey. From the moments leading up to the surgery to the last couple months in rehab to transitioning back to Haiti she has touched lives every step of the way. I have witnessed Caila overcome every single obstacle thrown her way. Through her courage, determination, and her amazing ability to never give up even at the point of true exhaustion and discouragement, God has shown His glory and power. His mercy and grace. HIM! Nothing is too hard for God! 

I am not sure how or why God placed me in Caila’s life, why He chose me out of the billions of people on this planet more qualified for the "job" than me. But one thing I do know is that I am beyond blessed and forever changed because of this amazing 13-year old girl.

"I am the LORD, the God of all mankind. Is anything too hard for me?" - Jeremiah 32:27