Run Forrest Run

Actually, “Run Caila Run” is more fitting. 

Few words need to be said for this post. Check out this video.

This video is from a little over a week ago. A new goal for Caila was to get her running (or rather jogging). Caila assured me she could not run and refused to attempt running for the longest time. After much encouragement and me being a little pushy, she allowed me to slowly increase the speed on the treadmill. The first day we attempted running she reached 4.4mph, but the second day, she reached 5.0mph. She ran at 5.0mph for about 45 seconds before pressing the “stop” button. 45 seconds may not seem long to some; however that 45 seconds seemed to occur in slow motion as Caila’s entire journey flooded through my mind. No words can be put together to encompass the emotions that not only myself felt, but also Caila in that moment. She may never verbally admit it, but you could see the pure joy that came across her face as she stepped off the treadmill. It was a beautiful God given moment. 

When Your Two Worlds Collide

This is way overdue, of course, that is how I roll with these blog posts…eventually I will post all updates, eventually.

In August, Caila and I ventured back to Philadelphia for her yearly check-up. This trip was different in so many ways. As oppose to previous trips, Caila was scheduled to be at Shriner’s for only a week. Two weeks is more appealing as we are traveling from Haiti; however it is amazing that she continually makes progress and requires fewer doctors’ appointments and less therapy. She is truly a miracle. 

So originally we were scheduled to leave Haiti on a Sunday morning and return that following Saturday. BUT American Airlines changed our flight times due to Haiti deciding not to observe daylight savings time leaving us with only a 50-minute layover. Fifty minutes definitely would not provide time for Caila and I to transfer planes. This conflict turned out to be a huge blessing in so many ways. American Airlines awarded us a full refund and in turn we extended our time in the states. After our planned week to Philadelphia, we decided to fly to St. Louis and then travel to Cape Girardeau. And this is where my two worlds collided….

I’ll begin with our trip to Philadelphia. Travels were a breeze this time around. We traveled with no personal wheelchair, no orthotics, and no assistive devices. Caila did use an airport wheelchair to Philadelphia, which was beneficial as the lines in Haiti were insanely long and the Miami airport is simply just huge. But not having all the extra equipment made us both manage travels with ease. We arrived in Philly and headed to the hospital. There were no rooms available at the Ronald McDonald House so we ended up staying at the hospital in the parent rooms they have available. Although we both love staying at the Ronald McDonald House, we were both okay with staying at the hospital as it allowed us to have a more relaxed scheduled and we were able to return to our room in between appointments….although Caila tended to choose basketball, air hockey, and pool over any relaxation. It had been a year since we had been at Shriner’s; however EVERYONE remembered us. Caila is quite the celebrity around there and I think she was a little shocked that everyone remembered her name. It was heartwarming to witness the love everyone at Shriner’s has for her.

Caila had a few doctor’s appointments and received daily therapy. She received nothing but good reports from her doctors AND she absolutely loved seeing her PT again. They have a pretty amazing bond and they picked up right where they left off. The week went smoothly and Caila and I enjoyed being back and seeing everyone again. Caila is so extremely blessed by the ENTIRE staff at Shriners and they are all like family. Actually, all of us at Respire are extremely blessed by this amazing hospital and even more amazing staff. Caila was cleared for continuing with yearly check-ups and to continue to do what she is doing. The goal for next year is to have her running before August (look for another blog SOON regarding this….). The week went by fast and we soon found ourselves saying, “see you next year” to everyone and heading on our way to St. Louis.

Travels to St. Louis were easy as it was a direct flight. We landed and went on our way to Cape Girardeau. This trip to Cape was meaningful in so many ways. Most importantly, Caila had lived in Cape with the amazing Brown family for 2 months after her surgery in 2014. They cared for her like she was their own and she adores them and has nothing both love them. Caila returned to Haiti in December of 2014 and the Brown family had not seen her in person since then. This means, they had not seen her stand or walk in person yet. I was so excited to see Caila reunited with them and oh how my heartstrings were tugged when they we able to see her walk. I cannot imagine what emotions were occurring in all parties involved. The Brown family was a HUGE asset to Caila’s recovery and seeing them all together was something special. They will all have a very special place in Caila’s heart forever….I have no doubt in that.

Having Caila with me in Cape is when my two worlds really collided. Cape became a huge part of my life after living there for 6 years prior to moving to Haiti and Haiti is obviously a huge part of my life. But it always seems that I have two worlds that I live in…my US world and my Haiti world…and these two worlds do not collide often. But they did collide when Caila was with me in Cape. It was surreal. She met so many people that I love dearly (and I met people she knew that I didn’t know…which is crazy in itself). She visited the Kenny Rogers Children’s Center, which was where I worked for 6 years and will always have a place in my heart. She even met my parents. It was simply just a crazy experience. I never imagined my worlds would collide (it really is a strange thing…feeling like you live in two worlds), but it was so awesome.

The trip to Cape was amazing and I saw Caila in a new light. She was out of her shell the entire week – which if you know Caila, then you know this does not happen often. Caila tried new things – zip line, ball pit, and even JUMPING OFF A DIVING BOARD. She smiled and laughed and enjoyed her time. Although, she did complain about being too hot….I kindly reminded her she lived in Haiti WITHOUT air conditioning!!

The two-week trip was amazing on all levels. I could not help but to just stop and be in awe of this child, this teenager, that has endured so much and come so far. I was so extremely blessed by traveling to Cape with her and having her meet so many special people in my life and me meeting those special to her. It is a memory that will forever be with me.  (and I have to add, that she did not use a wheelchair on our return trip to Haiti!!!!!!!).

A special shout out and a huge thank you to Molly and Justin Brown and their children; Nancy and Jim Bishop, and ALL of the staff at Shriner’s Hospital. Caila would not be where she is without all of your support, guidance, and intervention…not to mention your unconditional love and care. 

God's Glory through Brokenness

One year ago, my world was rocked. The following is primarily what I wrote sometime last August and then some more recent thoughts are added within it. It is lengthy, but I encourage you to read to the end.

July 29, 2015 began like any other Wednesday – early morning coffee, a walk up the mountain, prepping for another day in clinic. What started out as an ordinary day became a day that I will never forget - a moment in my life that will forever be etched into my heart.

I was standing by the door to the therapy room when, I saw someone approach. It was one of my therapy kiddos, S, and her mom. The mom did not say anything, but just stood there and looked at me. There was a sense of hopelessness in her eyes, but unfortunately, that was not abnormal to see in the eyes of the parents. My initial thoughts were, “S does not have an appointment today. Where have they been anyway? They will have to come back tomorrow”. Instead of saying all those things out loud, I glanced at the schedule and realized that I had an opening at that exact moment due to a cancellation. I quickly invited them in and had the rehabilitation technician begin her therapy session. Mom grabbed a chair and sat down as she normally did. We began chatting and she explained why she had not been at previously scheduled appointments – her brother had passed away 2 weeks prior due to a moto accident. Mom’s brother was her only support. In Haiti, if you have a child with special needs, it is extremely common for a parent’s family to become distant and unsupportive or even leave if the parent chooses to keep his/her child. So it is extremely hard losing a loved one who not only supports you, but also your child with special needs.

Mom and I finished our conversation and I began working on a few things as the rehab tech continued to work with S. As I worked on other things, I noticed mom acting differently than she normally did during therapy sessions. She typically would sit and watch S and most often would participate in sessions. But this day, she just sat and watched me. She watched other kids and staff members come in and out. She watched as I moved a shelf 10 times until I found the perfect spot. She watched as I answered a phone call from another patient. She just simply watched. I assumed she was acting differently due to the recent loss she had endured. Once the therapy session ended, instead of getting up and leaving, mom just sat in the room holding her precious little girl. She eventually fed S, but she just continued to sit and hold her. This was a little out of character for mom, but it is a common occurrence for parents to ‘hang out’ for a bit after therapy sessions so I did not really think twice about it. While mom sat there, I stepped out of the room to look for the next patient…..

While looking for the patient, my attention was directed elsewhere and a couple minutes later, I saw S’s mom walk by…without S. I quickly returned to the therapy room and asked the rehab tech where mom went. She said, “Li te bezwen achte yon bagay pou li” (“she needed to buy something for S). My heart immediately jumped out of my chest. In an instant, I knew, deep down, what had happened – mom had just abandoned S. I just knew. I tried to avoid that thought by searching for mom – I walked down the front side of the mountain and the backside of the mountain. I headed to all the little boutiques that were close by. No one had recently sold anything. Mom was nowhere to be found…

I headed back to the clinic and just sat with S. She was crying and not easily consoled – maybe she knew? I am unsure of what mom said to her before she left, if she said anything at all. Regardless, I knew that S was now labeled as an “abandoned child”. I sat with her, holding her while praying for direction for the next step. What now? What was I supposed to do?  So many scenarios raced through my head. I was overcome with so many emotions. The most prominent were fear and failure. Fear about what was going to happen next. Fear of S ending up in an orphanage where she would not be cared for or loved. It is too common that children with special needs are neglected, ostracized, or abused in orphanages. Failure - we strive to keep families together...questioning “what could I, we have done differently?” “What could I, we have done better?” I initially felt like I had failed this family. I knew her mom. I had a relationship with her. I knew, without a doubt, that S’s mom dearly loved her and cared for her…

Many hours passed by and we went through the proper protocol for an abandoned child. As those hours went by, I just prayed and prayed for mom to return. But as early evening came and mom had not returned, off we went to the staff house. S and I. One night turned into two and two into three…which turned into a week…and then into 3 weeks. Throughout those weeks, there was little sleep as S didn’t sleep much at night, but slept great during the day ;). It was a blessing that she was a happy little one as we spent our nights singing, talking, dancing, and listening to music. I was also thankful that she enjoyed listening to rap and hip-hop - - the two of us were definitely a match made in heaven. Sleeping 1-2 hours a night became custom and we had a schedule and routine. The nights were fun with the singing and dancing, but there were frequent shouts of “manman” (mom). Each cry out for mom was heart breaking. How do you respond to a child shouting for her mom, when her mom was not there? She knew her mom was not there, but I believe she had hope that at some point her mom would respond…and honestly the first night that she did not shout “manman” was the hardest. That night was when it became a true reality that mom was not returning. It was as if even little S had given up hope. That was hard. As hard as it was to listen to her cry out for her mom, it was even harder not to hear….

Many more things can be said about my time with S, but since this is not a book I will jump to the process that occurred to transition her to where she is now. Trying to find a placement for S was…well…words cannot really describe the emotions that I experienced during that time. God spoke to me early on and I knew we had to find a placement for her. I love S and we had a special bond; however, I knew I was not called to be her long-term caregiver and I knew God had amazing plans for her. After two weeks of coming up short and finding no place for her, we reached out to friends at MyLifeSpeaks (check out this AMAZING organization at www.mylifespeaks.com) – we knew that they were not taking in kids at that time, which we HIGHLY respected, but at the same time it truly was our last hope. On a Thursday, a few of us piled into the car and headed to MyLifeSpeaks. We walked around their community and met a sweet little family…little did we know that a seed had already been planted with this family. Long story short, they fell in love with S. Within a few minutes, they agreed to take S and be her parents. They did not see her blindness. They saw a precious child of God. I wish I could have frozen that moment because it was probably one of the most beautiful moments I have been apart of. With tears in our eyes, we sat down and made a plan for the transition. I left that day beyond happy…but also a little sad as I knew my time with S was coming to an end. Just two days later, on Saturday, I gathered S’s things and headed out the door. Megan and I drove her to MyLifeSpeaks to be united with her new family. As we drove away after transitioning her, I found myself in an emotional battle – happiness and joy because S was in a safe, loving home. But at the same time, I was sad. We had developed a pretty special bond. A bond that I will forever cherish.  

I knew…and still know….that it was the BEST for her. She is with a loving mom and dad and now has 3 siblings. She is thriving – talking tons and starting to walk some. AND she is just down the road so I get to see her once in awhile, which makes my heart happy. God is good…REALLY good.  

Throughout the time I had S, she was the main focus of everyone. But there was not a day that went by that I did not think about her precious mom. During the many months that I worked with S and her mom prior to July 29^th, many things were witnessed. I witnessed mom go from having minimal hope for her daughter to having confidence in her daughter. I witnessed mom go from being a little distant to being inseparable from her daughter. I witnessed mom never showing a smile to a smile plastered on her face. S’s mom and I shared many laughs and many tears throughout the time I worked with her. I knew mom’s bond with S and I knew her love for her child. I knew that after mom’s brother passed away that her and S were living with family members who were not supportive. I knew a lot about their situation – things others do not know and things that I have never shared. But one thing is true – S’s mom deeply loved her and cared for her. It is not often that a day passes without me thinking about mom. I wonder where she is and what she is doing. I wonder if she is hurting…does she think about S? Surely she does. I cannot even begin to imagine what she is feeling. I pray for her often. Giving up a child she loved dearly – that is something that is difficult to understand. But it is something that happens way too often here. So often that it is a common reality. A reality that breaks my heart into a million pieces.

The brokenness here is evident. It is hard to accept the fact that abandoning a child is commonplace. But S’s story is so much more…through her so many witnessed God’s glory shine through. Redemption. Mercy. Grace. He has big plans for little S and I am so blessed that he wrote me into a tiny part of her story.

 Loved bath time!

 Baby yoga - it is how we spent most of our nights!

 Her laugh is the sweetest! 

  

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 :)