The Journey of Lala

Little Lala. Some of you may remember the story about the papa holding his child in our support group, if not then be sure to check out the blog post titled “A Dad Holding His Child”. In that post, I did not disclose the story about how we came to know precious Lala and her amazing papa and mom. So here is an overview of Lala's journey.....

            December 2015 is when the journey of Lala began. I met with Lala’s father and her just a couple of days shy of Christmas. At that time, Lala was not living with her mom, dad, or family. In this initial meeting, I witnessed the love her dad had for her.  But her papa strongly felt that he was not capable of taking care of his daughter and actually expressed his fear of his daughter dying in his care. Ultimately, she needed to be with her family; however due to difficulties feeding she was not in taking foods or liquids therefore was malnourished. The immediate arrangements were for me to take sweet little Lala home with me and work intensively on her feeding and oral motor skills. I was to take Lala home with me that same day with the understanding that she was to reintegrate her with her family in a couple of weeks. Her dad got tears in his eyes and immediately said “Mesi Jezu” (“Thank you Jesus”).  He agreed to travel to the clinic two times a week to work with Lala and myself. Lala was with me for a little over two weeks. During this time, Lala began slowly making progress. And by slow, I mean SLOW. Initially it took almost 2 hours for her to get maybe 2 ounces of fluid down. She would tire very quickly and we would have to take frequent breaks. But with time, Lala began to make great progress in eating and began gaining some weight. Aside from the feeding issues, Lala was an extremely “easy” little one. She slept 10+ hours every night and was an extremely happy, go with the flow little one. Her facial expressions and personality are to die for and captured the hearts of so many. After the few weeks, we felt she was in a stable place and able to transition back to her parents full-time. I should add that her papa came to every scheduled appointment, worked very hard in learning proper techniques in feeding, and attended parent support group. Her mom came occasionally as well.

            Lala was doing well for a while, however became pretty sick and eventually began refusing food again. She became extremely resistant to anything being brought to her mouth – all fluids and food. She would hit the cup or utensil away and/or cover her mouth and turn her head. Due to this, she began losing weight again. We discussed inpatient malnutrition care with her papa; however he felt strongly against this as her mother, who displays some mental health difficulties would not be able to stay with her and provide the care she would need while in an impatient setting. We wanted to respect her papa’s wishes and honor that his request to not have mom travel with her to an inpatient care facility. At the same time, we did not want her to go to an inpatient facility without a parent present, so we went with another option. This option included Lala living in a foster care situation during the week and returning home every weekend. Little Lala was once again in my arms on the way home to the house. It was decided that Lala would stay with me until we could find a foster family to care for her during the week. Lala required frequent feedings throughout the day and the clinic schedule made this difficult. The perfect solution came about after a couple of weeks. A friend who lived nearby and was preparing to open a daycare for special needs children, but had not opened yet and was available to help care for Lala. So her and her husband took on Lala’s care. We set up all the arrangements and Lala was on her way to Lydia’s. She would be with Lydia and Cold Monday-Friday morning. Lala would come to Respire for therapy and for weight checks and her papa would come pick her up every Friday. She would return to Lydia’s on Monday morning.

            Lala began gaining weight and improved in motor skills – even starting sitting on her own. She also became best buds with a sweet little kitty. This arrangement lasted a little longer than expected and eventually Lala hit, sort of, a plateau. She was maintaining the weight she had gained but not necessarily gaining. She also began developing slight attachment issues so we made the decision to transition her back to her family full time. The transition occurred at the beginning of October – right before the hurricane hit Haiti. Luckily, the hurricane passed by and our area was not hit hard and faired pretty well. Once Lala transitioned home, she still came to the clinic for therapy and weight checks every week. Lala blossomed even more once she transitioned home full time.

            Fast forward to present time. Lala is thriving and has gained a good amount of weight. She is still tiny for her age, but her progress is not small. Her papa continues to bring her to the clinic weekly for therapy and weight checks. He is never without a smile. Lala on the other hand sometimes pulls off the most amazing eye roll one has ever witnessed. It is quite impressive. She is sometimes less than amused to have to “work” during therapy. Even still, she has made significant progress. She has become mobile by crawling in an army style way. Her favorite thing to do during therapy is escape from the staff and “crawl” to her papa. If she makes it to him, then she just smiles and babbles and laughs. If she doesn’t, well…then…cue the eye roll. She is working on crawling in a quadruped position as well as standing and walking. Her ankles and knees are quite lax so needs assistance with stability with use of orthotics and knee immobilizers until her strength improves. I was so blessed by being able to witness her papa watching her stand and attempt to walk for the first time ever. Tears to his eyes and he raised his arms in thankfulness to Jesus. Lala has began to babble and attempt to say words. She has no problem expressing her needs or wants by use of her facial expressions. We could start a "faces of Lala" movement that would surely brighten even the darkest days.  

            Lala continues to win the hearts of everyone who walks into her path. Her journey is far from over and we cannot wait to see what God’s plan is for her. One thing that is certain is that she has a God given ability to bring everlasting joy to those around her. It is a huge blessing to be a part of her journey! My life has forever been changed. 

            This is a story that follows the journey of a papa who once thought he was incapable of raising his little girl who was diagnosed with Down Syndrome to a papa who has realized he is fully capable of caring for his youngest daughter. A papa who once questioned why he was given a little one with special needs, but now thanks God daily for her and has a love for her that cannot be described in words. A little encouragement, empowerment, and love go a long way. Keeping families together is the goal and this story shows just that and is an example of God’s mercy and grace in an amazing way. The journey is not easy, in fact, it is exhausting and frustrating at times. But seeing a family thrive TOGETHER is worth every minute and every struggle. 

And a special thank you to Lydia and Cold who were a HUGE blessing to have come along side us and become a huge part of Lala’s journey. I am forever thankful for their selflessness and willing to step up and care for Lala!! Be sure to check out their ministry – Promise Harbor Family Center  (if the link does not work you can search Promise Harbor on Facebook).

And now enjoy just a few pictures of little Lala!!

Lala questioning what adventure we have her going on this time....

She is wondering if it is really time to get up?!?

This would make for one adorable Post-It Ad!

Here she is saying, "i am not really in the mood for therapy today".

Hmmm.....not to sure about this standing and walking thing....

Lala with her precious momma!!!

 And her amazing papa!!

Please be in prayer for Lala and her precious, amazing parents. They may not have a lot in the materialistic sense, but they sure do have an unbreakable bond sealed with unconditional love.