From Therapist to Caregiver

Many of you know that I spent two months (February and March) in Philadelphia with a young girl from Haiti. During these two months, I went from the role of therapist to the role of caregiver. Caila received scoliosis surgery in late July 2014. We traveled back to Philadelphia for her to receive inpatient and outpatient therapy services at Shriner’s Children’s Hospital. Near the end of the two months, I wrote the following….

One cannot truly sympathize or empathize with another until she has had a similar experience. I always knew that being the parent/caregiver of a child with special needs is exhausting (obviously being a parent/caregiver in general is exhausting). I have seen the tired faces, the frustrated faces, and sometimes the hopeless faces on many parents over the years as a therapist. I have had multiple conversations with parents about the difficulties they experience on a daily basis. But it was not until this experience that I had a slight glimpse into the everyday life of someone caring for a child with special needs. Only now do I have somewhat of an understanding of all those parents I have interacted with for so many years. I will be the first one to tell you, it is exhausting…and sometimes a downright challenge.

From the "home exercise" struggle to the "you have to wear your orthotics" struggle to the "stay on a schedule struggle" to the "yes, you have more therapy" struggle to the “it’s 3am…and I am exhausted…what do you need” struggle, etc., etc., etc. I definitely get it now...to a certain extent. I was only serving as the caregiver for 2 months...caregivers of children with special needs do not have a 2-month limit on the day in and day out struggles. I understand the days of exhaustion. I understand the days of feeling discouraged. I understand the days of feeling defeated. I understand the days of feeling alone. I got a glimpse into the world that these parents experience all day, every day for the child's entire life.

At the same time, I experienced firsthand all the triumphs and pleasures that come along with caring for a child with special needs. As I watched Caila overcome so many obstacles, my heart smiled. Her ability to keep pushing forward through exhaustion, frustration, sadness, etc. was purely heartwarming to witness. The feeling a parent must feel each time they witness his/her child overcome obstacles must be of pure joy – something that just cannot be put into words. A child with special needs achieving a milestone is a little slice of heaven on earth. I now understand this from two perspectives – the therapist’s and the caregiver’s. That little slice of heaven is what kept me going in Philadelphia – all the struggles were nothing compared to the pure joy that always followed as I watched Caila during her therapy sessions.

Parents/caregivers of children with special needs have a full time job plus over time. They deserve to know…and therapy friends, don’t kill me for saying…but they deserve to know, that it is OKAY to miss a day of the “home exercise program” and it is OKAY to miss a day of wearing orthotics and it is OKAY to cancel a session of therapy just for a break, and etc. It is OKAY to not fully abide by the therapist’s recommendations 100% 24/7….this is simply not realistic. Superheroes need a break every once in awhile…and these parents/caregivers are definitely superheroes in my eyes. Now, when a parent says, “we didn’t do the exercises one or two days or a week”, I can now sympathize with them instead of jumping on the “frustration” train.

I am confident that I can now fulfill my job as a therapist with a lot more compassion for everyone involved. God has blessed me by opening my eyes and my heart to develop a little more understanding of the parent/caregiver role…and I will forever be grateful.

Transitions

Life is always full of transitions. Every one experiences transitions on a daily basis. Some transitions are small, some are big. Some are welcomed and others are not. Some are easy and some are difficult. Regardless of the transition, if one allows, a period of growth occurs. Through all transitions, even the difficult ones, there is beauty. We can see this beauty only if we open our hearts to each transition.

Recently, I have expereinced many transitions. All of these transitions have been God-led; however they all have not been the easiest.

On December 18th, I transitioned from months in Haiti to a month in the states. Only 4 weeks in the states...back to the familiarity of the states, of my home, of my family and friends. This should have been an easy transition, right?! But I quickly realized upon returning to the states that the familiarity was gone. What was familiar to me just a few months back was now unfamiliar territory. It was no longer my comfort, my normal. It was different. There is no other words to describe it...it was just different. But the beauty in this was that I had places to go back to. I had friends and family to catch up with and I had old patients and families to visit.

In the short 5 months I lived in Haiti, I developed a life there with new relationships, new friends, a new lifestyle. All of which had become the normal for me. All of which had become my comfort. Leaving all of this behind was not the easiest. I knew that it was my time to go and I knew that God was leading me to new adventures, new opportunities. I had peace about leaving, but that did not make it the easiest. I know that most of my new friendships would be reliant strictly on technology and the chances of me seeing people in the physical form is slim to none. I also know that it is most likely, over time, these friendships may dwindle. That is tough...but the memories will last a lifetime and for that I am forever grateful. 

The month in the states borught about the holidays, moving all my stuff, selling my car, preparing for the next transition to Haiti, and saying goodbye to family and friends once again. The month in states went by smoothly and quickly. The fact that even the weather was good and there were no speed bumps in the 4 weeks is amazing. I was so grateful for the 4 weeks back home in Missouri and Illinois. The 4 weeks flew by and I soon found myself another plane heading to Haiti...

Another transition. I was headed to a different town and to a different "job". Out of the big city of Croix-des Bouquets to the smaller citty of Gressier. Out of an established therapy clinic with other therapists to a non-existant therapy clinic with no other therapists.  Transitioning to a new living situation with new people. Transitioning to simply a different, unknown life within Haiti. This transition was thankfully easy. I do not say that in a prideful manner. I was extremely blessed and Iit was simply just easy. I think this truly shows how amazing God is and how "easy" something can be when it is in God's plan. It was not a struggle to begin in this new setting. Once I arrived, I immediately felt comfortable and at home. 

Then 3 weeks after this transition on February 7th, I was back on a plane headed for Philadelphia. Yes, another transition. Although this was not a long term transition, it was a transition none the less. I was headed to the states with a young girl from Haiti for her rehabilitation post scoliosis surgery (more on this later). I was on another unfamiliar journey to another unfamiliar environment with more unfamiliar people. All I knew was that I was going to be the temporary caregiver for this young girl. I knew that I was flipping roles from therapist to caregiver. I will say the time here has been amazing and I have learned a lot of life lessons about being the sole caregiver for someone...lessons that I am grateful for and will only help me in my future work as a therapist. (Again, more on this in a future post).

Now, it just 10 days, I will be transitioning back to Haiti. Another transition. Although, this one doesn't seem too much like a transition, just a "going back home" type of feeling. But after 2 months of "living" here in Philadelphia, it will be sort of a transition to leave here. Caila and I have gotten to know other families, other kids, therapists, nurses, drivers, and numerous other staff members. All of which have been our familiarity for 2 months. As we are both ready to head back to Haiti, extremely ready, we will both miss seeing and conversing with everyone here on a daily basis.

Transitions. They are a part of our every day life. They can be a struggle, they can be easy. All have beauty hidden within them. Even through the unknown, there is beauty - God given beauty. God leads us down certain paths in life and only He knows the end destination. We just have to be willing to follow his guidance. He has already traveled our paths, He has already encountered our transitions. We have to put all of our trust and faith in Him and know deep within our hearts that He will guide us every step of the way. And along the way we must open our hearts and see the beauty that lies within each step....I am eager to see what transitions he puts in my path in the future....

Endings and Beginnings!

I am about 3 weeks behind on getting an update to everyone. I sincerely apologize...finding the time to sit down and actually focus on something has been something of a challenge the past few weeks. But here at last is time! 

So just for a brief update. On December 12th, I completed the 4.5 months commitment through Haiti Medical Missions of Memphis. The 4.5 months FLEW by, although, at times, I am sure I was found saying, "the days are going so slow". I guess that is just life sometimes! I was/am so extremely blessed by the past few months. I learned so much, not only about therapy, but also about myself, about life, and about others. We are all on a God given journey. Yes, each journey is different and takes each of us in a different direction; however each journey has been carefully laid before us by God. I have seen/experienced when you do not follow the journey God has planned and I have seen/experience life following the journey God has planned....and WOW! The difference between the two are drastic in so many ways. It is simply just amazing.

God continues to lay a path in front of me that I never could have imagined that I would be on. A path that was practically the farthest thing from my mind. A path that was never in "my plan". His path has led me to continue my journey in Haiti. In just a short week, I will be back on a plane heading back to the country that stole my heart. I will be joining the team at Respire Haiti for hopefully a year. See below for further information....enjoy!

A Few Quick Updates

Updates…

First an update to the blog titled “Answered Prayers”. So Friday October 10th came around…so did 2:00. Two o’clock is when we were supposed to leave. We were to be in Port-au-Prince by 3:00…although it was not too far away, I knew it would take an hour at least to get there. But I also knew there was no way we would leave on time….leaving “on time” has no meaning here in Haiti. Everyone here runs on “Haiti time”…anyone who has been here before completely understands what I mean. The clinic car…the only one we have here…left around 10 that morning in an emergency to take a baby and the mom to a hospital. At 2:30, the car still had not arrived back at the clinic. As the medical director called the driver…and called again and again with no response, he finally flagged down a tap tap (public transportation) that had come onto the compound. The driver of the tap tap said he would take us for 1,000 gourdes (equivalent of ~$20)…a short tap tap ride is 5 gourdes and the most I have paid for a tap tap is 15 gourdes. So 1,000 gourds is completely outrageous. As the medical director and now the logistics coordinator argued/negotiated/discussed with the tap tap driver, the clinic car finally arrived. So we loaded up and off we went to Port-au-Prince around 2:45…remember we were supposed to be there by 3….but don’t worry the person we were meeting was also running late - “hatian time”, ha! Anyway, so we finally arrived at our destination. The person we were meeting immediately led us up a staircase to the roof….this stair case had no railing and it was pretty much just floating in the air. Not only did it not have railings but it had rebar sticking out from each step in multiple places. This is not uncommon here; however it was a little unsettling, especially after I realized that we would be carrying wheelchairs up/down these stairs. Once we reached the roof, Dawn opened up the doors to a shed and right there before our eyes was wheelchair heaven. Hundreds of wheelchairs…yes, they were literally piled on top of each other; however there were SO MANY chairs!!! Nice chairs…chairs you cannot find easily in Haiti…chairs that we now had access to….amazing.

One chair down the stairs. Too big. One chair back up the stairs. A second one down the stairs. Too small. A second one back up the stairs. A third one down the stairs. Something just wasn’t right. A third one back up the stairs. A fourth one down the stairs. Perfect. The fourth one was the best fit for him. He was comfortable in the fourth one and the fourth had a lot of options to adjust to make it just right for him. 

So we loaded up the chair into the car and we headed back to the compound. He finally had a chair and his mom finally does not have to carry him everywhere they go. All in all, it was a successful 5 hour journey. 

Second:

An update on the blog titled, “A Story About A Girl”. Progress. Connection. Love. Those are the words that first come to mind when thinking of this particular patient (I will call her DJ). DJ has made DRASTIC progress. It was brought to my attention shortly after I posted the original post that DJ’s grandma wanted to give DJ away…she was tired and exhausted and she felt that she just could not handle DJ any more. DJ’s grandma wanted ME to take her. She wanted me to take DJ and raise her as my own. Obviously, this is not an option for many reasons, but the main one being DJ has a family and she needs to stay with her family….
DJ and I have made an unbreakable connection which is good and bad. It is good because now she trusts me and she listens to me and we have a ball of fun together. It is bad because I am leaving. As I move on to the next adventures God has in store for me, I am leaving her behind. It may sound harsh, but it is the truth. I am leaving her behind and she may never know why I left her. Just last week when she came to therapy, she was 30 minutes early so her grandma was walking her past the clinic doors to head to a bench to sit outside while waiting until her appointment time. However, DJ refused to continue to walk past the door. She stopped right in the doorway. Spotted me from across the room and with a big smile on her face reached out her arm as she wanted me to come get her to work. I walked over to her and explained to her she had to wait for 30 minutes and then I would come get her…with a little struggle she complied. Two o’clock rolled around and I walked out to get DJ. She jumped up grabbed her stuff, handed it to her grandma, grabbed my hand, and walked into the clinic. She immediately sat down, took her shoes off, and waited for me to give her a direction. PROGRESS!!! CONNECTION!!!! I was so excited. But then I was overwhelmed with a feeling of sadness as it was then that I realized I would be leaving her. She was so excited to see me…and in just two short weeks, she will be left to wonder where I am. After another AMAZING session with DJ, I took her out to her grandma. I explained how well DJ did during therapy. As the grandma listened, she looked at me and with a HUGE smile on her face said that she is doing a little better at home. Then she said many times “thank you”, “thank you for coming to Haiti”, “thank you to your parents”, etc., etc., etc. It was then that I realized, grandma wasn’t as exhausted as she used to be and grandma wasn’t as defeated as she used to be. DJ’s grandma was proud of DJ…very possibly for the first time ever. And as I watched them walk away to get a moto, I realized that I would be leaving her behind, but her grandma is here to stay. LOVE!!! 
Progress. Connection. Love. 

Check back for further updates very very SOON!!!!!

Pictures

I am currently writing an update on my journey, but the meantime, please enjoy a few pictures :)!!!!

                               Smiles and laughter is always precious from this little one!!!!

                                                        And so are her loving eyes!!

                                                    Nothing like a new pair of orthotics!

                                                Always a smile on this young man's face!

                                         An unbreakable bond between a mother and a son

                                                    A new set of wheels is always good!

         Every little girl will work for money and yes, I did tie her bow around her head like a ninja, ha!

                              She is usually crying, so we had to capture this beautiful smile!!

                                               First time playing baseball...he is a natural :)

Precious face of a hard worker!

And there is always time for birthday celebrations!!!!

***all pictures shared with parent permission

A Story About a Girl

Shortly after I arrived in Haiti, a young girl came into my life. This young child showed up one day at the clinic about 3 weeks after I started working in the clinic. One day I walked into the clinic after lunch and she was standing in the middle of the room. I thought nothing of it until I heard my name being called from across the room by another therapist. This therapist “quickly” filled me in on the story about this young child. Every one thought this little girl may have Autism. All I learned at that moment was that she didn’t verbally communicate, she was extremely aggressive with hitting and biting constantly, she didn’t transition well, etc., etc., etc. I asked what she could do…but I received no answer. I also learned she had been receiving services previously; however she had stopped coming in May. When I asked why, I got this answer, “her mother and grandmother took her to get a brain scan and they were waiting for the results”. I was slightly confused on the whole situation…okay, well actually I was really confused. I did not know what “scans” she got (and no one could really tell me)…and I wondered why it would take 3 months for the results to get in….and I still do not know what the results even were. I also quickly realized that I would be the one working with her…no one else was jumping at the chance and in fact…some may have even quietly exited the clinic for a minute. (I don’t want that to paint a negative picture of my coworkers…none of them have ever worked with a child who has been diagnosed with Autism or sensory processing deficits, so she was a difficult case for them...it is not as common here as in the US). Of course, I agreed to be the one to work with her weekly. Even though I have experience in working with children on the Autism Spectrum, I knew that this would be a big challenge. I depended a lot on verbal cuing when treating children on the spectrum….I do not not speak fluent Creole, so I could no longer depend on verbal communication. But none the less, I accepted the challenge without a blink of the eye because I knew this child was special…she was a child of God after all! The first session with her began extremely well…who knew she would love “barrel o’ monkeys”?!?! Ha!!! After I had about 10 monkeys hanging from my hair (any possibly after many strands of hair went missing from my head), the aggression began! Hitting, biting, scratching, and pinching. I quickly realized she was simply looking for a response. When I did not respond with anger, she appeared slightly confused. That is when I learned that she is often HIT at home. I am not talking about a little spanking…I am talking HIT. She is hit A LOT at home. Caregiver education is the most important part of her therapy!! This little girl has learned to communicate through aggressive behavior. Problem. So she demonstrates aggressive behavior along with minimal verbal communication and some sensory processing deficits. But her facial expressions will make you laugh and it hurts and will make you instantly fall in love with her!! She is ONE OF A KIND...just as God intended her to be :)!!!!

As the weeks went on, session after session was a struggle for both of us. We had good moments and we had bad moments. (Not to mention a missed therapy session due to her falling into the toilet…bad situation). We both ended every session in a massive amount of sweat. Each and every session I tried to give direction as best as I could and she just would not follow simple directions. I tried everything. But we just were not connecting. I prayed for her and I prayed for me…I prayed for us. 
And just as I felt defeated and discouraged, something amazing happened. Last Friday another therapist was able to join me in my session…I strongly encouraged other staff members to work with the child with me so I could teach them about Autism since I will be leaving in 6 short weeks. During this session, I realized that the young girl and I had in fact made a connection. It was then that I realized how blinded I was to this connection…yes, she may not have always followed directions or completed tasks or did anything but sit under the mat table, but she saw that I was still there…I stayed with her during all these moments…I stayed with her while she hit and bit and scratched…I stayed with her and didn’t hit her or yell at her. I quickly realized how important this was…how important it is to not get wrapped up in the therapy so much that I lose sight of relationships being made. 

During this session with the other therapist, the young girl engaged with me. She followed directions, not 100%, but significantly more so than previous sessions. She would follow directions if I verbally stated them….but if the other therapist stated them she would not. I realized then just how important trust and consistency truly is. She laughed with me and she talked with me (through many babbles and nonverbal language)…she actually wouldn’t stop talking :)!!! (And I will say that she even VERBALIZED "wi" (yes), "non" (no), and "ban mwen" (give me)!!!!!!) I just sat and smiled and pretended I knew what she was saying. So there we sat laughing, talking, and playing. We had a conversation about who knows what and we both fell into contagious laughter. CONNECTION! The connection has been made…the relationship has been built. We took pictures together…just her and I. My heart was immediately happy…and my eyes filled with tears. God is SOOOO good. We still ended the session in a massive amount of sweat, but we also ended the session with laughter and only ONE attempt at hitting. I will say it again…GOD IS SO GOOD!!!! 


But as I sat there…my happiness was clouded over just a bit because I know in just 6 weeks I will be leaving. The next 6 weeks will fly by and just like that, I will be gone. So what will happen with this little girl? The other therapists are FABULOUS and completely have the ability to work with her…but for the past 2 months, I am all that she has known. I just wonder if she will feel I abandoned her or that I didn’t care. I wonder what will go through her precious little mind…will she even noticed that I am gone? All of this is exactly what I was feeling/experiencing when I left my job at Kenny Rogers and moved to Haiti. These same emotions were present in July as I said my goodbyes to “my” kiddos. The unknown...it is tough, but one thing I do know is that I truly will miss her just as I miss all my other kids!!!! 

Heartwarming Stories

Today was a day full of happiness. I will share two of the many stories from today. 

Enjoying life….

A 13 year old boy who has a diagnosis of CP (cerebral palsy) was carried into therapy by his father. (For this story we will call him John and his father papa.) John always has a smile on his face. Upon first looks, one would think he was probably around the age of 8. John is unable to stand independently or walk independently. John is able to maneuver around by rolling and somewhat crawling; however it takes a lot of energy and muscle strength for him to do so. John is able to talk; however has difficulty with articulation and voice production (so he is hard to understand at times). Johns personality always lights up the room (which is good since we have no light in the clinic right now). He can make any day into a great day. He just warms your heart and puts a smile on your face. Powerful! So as we were starting therapy, John quickly said to stop and wait. He turned to papa and said, “papa, i need to call mom. I need to tell her I am here working”. Papa laughed and politely attempted to redirect him to continue therapy; however John REALLY  wanted to call his mom. So his papa attempted to call her. No answer. His papa convinced him to get back to work. John kindly let us know that we were working on his legs and to continue with that (seriously…his words). Quickly, papa’s phone rang. It was mom. So John said a few things to her and then demanded that the translator talk to his mom. You see, John is demanding in a sweet, caring way, so the translator quickly found herself talking to his mom. John was beyond excited and full of smiles and laughter. Once John got the phone back, he very seriously stated, “ok, I need to work. Bye”. So as the session went on, I decided to assess John’s vision and see how his eyes are working. I also decided to take a couple photos and video (with papa’s permission) to use in a presentation I am currently working on. John demanded…remember in his caring, sweet way….that papa be in a photo with him. So below you can see John and papa….two people who love each other dearly and who both can brighten even the darkest days. Special people have that ability…and these two are two very special people. Nothing else mattered in the world during that hour therapy session….just a teenager enjoying the life he was given!

Hope in a Bucket….
A fews weeks ago, a mother sat on one of our mats with her head buried in her hands crying. She was crying because at that moment, she felt hopeless. She felt hopeless because her precious son is unable to independently sit, crawl, roll, talk, walk, hold his head up, etc. Her beautiful boy who is 2 years old needs a lot of help from her to complete all tasks. She loves her boy, but at that moment she felt hopeless.  She sat there wondering if her child would ever do any of the above. She sat there wondering if her child would always need her help. She sat there wondering what he would do if something were to happen to her. She just sat there wondering and crying. Through the tears she was able to say that she just hoped he would sit up one day. You see, she has no chair at home that he can sit in independently. She has always held him and carried him. She doesn’t have the luxury of a seating system or a wheel chair. What she does have though is love…love for her boy. That is evident in his bright smile every time he hears her voice. That day that she sat there in tears, we told her if she could bring a bucket, we could make him a chair. Even though she left that day still feeling hopeless, the next time she brought her son to therapy, she was very proudly carrying a bucket. She gave a little smile when she handed over the bucket. That little smile was a little sign of hope. 

Silvana and I began working on the chair on a Saturday just two days after she brought the bucket. We just knew we had to get this chair done quickly. However, quickly is used lightly as we still had a full schedule of patients to see, so we did work while we could. A little here and there. As the next couple of weeks went by I watched the mom during therapy. I watched her look at the other children. I watched her look at the little boy giggling as he ran away from the therapist. I watched her witness a 5 month old baby sitting almost independently with perfect posture. I watched her look at a little girl take her first steps unassisted. I watched her as she looked at a child running to his mom telling her he loved her. I just watched her. What was she thinking in those moments? That I do not know and I will never know. What I do know is that after each of those moments, I watched her look at her boy with a huge smile on her face. Pure love. 

So today, she brought him into therapy with no smile, but no frown, just a flat affect. She kindly said, “Bonswa Ashley” (hello) and handed me his appointment paper. I asked her to move a couple mats down and while she was gathering her items to move, I quietly walked to other side of the room and grabbed his FINISHED chair. I sat the chair down next to her and she immediately looked up at me and said “Mesi, mesi, mesi” (thank you, thank you, thank you), but still had no smile. Then we put her boy in the chair and adjusted a few minor things. Then there he was in his chair sitting by himself. In that moment as we watched his mom look at her boy, I saw her face fill with hope and then there was that smile. The beautiful smile that she holds in so quietly sometimes was out to shine at that moment. The look in her eyes was priceless as she looked at her boy. The moment was just between her and him and that moment was priceless. So priceless that even a camera could not have captured the beauty and no words can describe it. But it will forever be embedded in my heart. We were all left a little speechless because we had all witnessed the same moment. The mom was so appreciative and could not stop thanking us  Is the chair perfect? No. But did this chair bring some hope along with some relief? Yes. That I would not trade with perfection any day of the week. After a few pictures (per moms request), off they went on a moto…mom, son, and his chair….

Below is a picture of all of us…. 

(sidenote: his head is better positioned than what the picture indicates….)

***All stories and pictures shared with parent permission