Say Hello to Lexi

lexiThe Interim Healthcare Foundation had the opportunity to serve a wonderful little girl in Amarillo, Texas named Lexi. Lexi was born only weighing 1lb 8 oz or what is referred to as a micro-preemie. As you tour Lexi’s page, you will see a tiny little baby with yet undeveloped eyes and a barely formed body.

lexiThe statistics show that even with a small chance of even living out of the womb that tiny, the issues with brain function, cerebral palsy, blindness, and a host of other abnormalities will occur – such is the case with Lexi. She is now three and one-half years old.

The family applied and was granted the opportunity to take Lexi to Disney Land though the Amarillo Make a Wish Foundation. As with most severe illnesses, the financial requirement of caring for a very ill daughter is ravishing to a family’s resources – emotionally and financially. Through a loving angel in the Interim Home Health and Hospice Corporate offices, our foundation was notified that there was a need for summer clothes and cash for the trip. We were honored to provide this family a check to help them make this trip without further draining their finances.

Editorial to the story from Dave Clark, Executive Director of the Interim Foundation:

Our foundation shares the story of Lexi because this family has chosen at this time not to place Lexi on a hospice service. Yes, there are many financial benefits for a family to be assisted by such a financial service and one that could give the family some rest and emotional support. That is part of what hospice can provide among a host of other benefits. But being a parent, it is hard to turn loose of your baby for any reason. Even to a baby sitter to go to a dinner and movie with your husband or wife without the kids – just a quick date. How many can remember saying, “we just need to go home because I can’t quit worrying”, or you sit and ‘fidget’ because you can’t keep from worrying if everything is OK.

I am not to judge whether being on a hospice service is a good or bad decision because I have not been in a bedroom late at night holding the hands of my wife watching my baby have seizures and strain to live. Yes, I have been with parents late in the night at a hospital NICU watching them hope and pray that their little baby would grow up to be that darling little girl or boy – but no matter, my heart cannot feel the anguish of that parent.

My medical experience says, “Why not be on hospice? – hospice is not just for elderly folks.” It could only help in so many ways. My experience will argue a hundred reasons why a hospice service would improve the entire situation. My head says that it would only help. As professionals who provide medical services, we sometimes become so “program orientated in the modern era of health services” that we may loose sight of what is right for one is not the right decision for another. After all, in years past, families, friends, neighbors, church members surrounded and cared for each other without all the modern day programs which, in the long haul, may not be proven any better. I know it will probably not be me who will answer that question in my lifetime.

This is what I know: “The mission of the Interim Healthcare Foundation is to assist those who are coping with terminal illness, death, and the process of grief and bereavement.” We are not going to judge if they are on a hospice service or not – we are going to meet them on their journey, wherever that might be, and be a Samaritan. As the story in the bible describes the Good Samaritan on his journey who stopped on the road to assist the less fortunate – so are we. We will not judge but love them in the form of a gift to make their journey more bearable, comfortable and for them to realize the Body of Christ will respond in the time of desperation.

So, I encourage you to get to know Lexi and her mom, dad and sister. It is a gut wrenching story of sacrifice, heartache, joy, and laughter. More than anything it is a story of understanding how a little girl is changing the world she lives in because of who she is….

Back to the Story from her mommie…..

Being a mother of a micro-preemie is probably one of the hardest tasks that God will place upon me in my lifetime. To the outside world, those that do not know Lexi's story or how far she has come, Lexi is a smart, bright, beautiful little spirit full of energy and sass. What they cannot see is what lies beneath her porcelain skin. Illness riddles her tiny body and, for the better part, we have the majority of the problems under control. However, that is for now, meaning in this instance, because when Lexi's body decides to rebel, it does so in the blink of an eye.

Living with a child with four different and unique seizure disorders is difficult. We dare not say the word out loud in our home for fear that it will jinx us. So far this week, Lexi has had two episodes. In the past, we would rush her to the hospital. Now, we just learn to work through them. There isn't anything that anyone can do but keep her safe and get her through them and pray to God that they don't take her from us like they almost did this past January.

Lexi recently was diagnosed with spectrum behavior disorder, that being the autism spectrum. It is very difficult to watch our baby battle the conflicts in her mind. She is constantly throwing herself around and down, constantly self-stimulating, and goes from happy to sad in the blink of an eye. It is so hard to watch knowing there is nothing I can do to comfort her. I can only let her work through it on her own.

It is also difficult to go into public. Lexi lives in this little bubble that we have created to keep her safe and to protect her from her own immune system (or lack thereof). When we do venture out, Lexi can chose to be good or she can choose to be bad. Either way, she does not realize what she is doing. Lexi's brain does not comprehend right from wrong. She does not understand intonation of voice or discipline. People stare at me as if they are saying, "Control your child." If only they knew that it is so difficult to do what seems so easy to them.

Since the birth of my daughter, I view the world through a different set of eyes. I don't stare in wonder at those around me with handicaps. Instead, I smile and converse. I don't criticize parents with screaming kids. They may have something similar to Lexi's disability. I have always tried not to judge others, but I know that the human side of me has taken over in the past and I have shot dirty looks or muttered under my breath. That part of me disappeared when I saw my daughter for the first time. She is special. Every person is special in their own quirky way. We are all exactly how we were meant to be according to our Maker. We are perfect in His eyes.

God gave me this precious girl to look after for Him. He chose me, out of every woman on this Earth. For that, I feel blessed in Him. So regardless of what life throws at me, I will keep looking out for Lexi, because that is exactly what I was born to do.