My prayer for families who have children with special needs.....

 This time of year you hear all about wishes, what is your Christmas wish but my thoughts are prayers for families who have a child/children with any special needs, whether it be medical or developmental, if this happened before birth, at birth or even years later it doesn’t matter there was something wrong with your child and your world was rocked.  These thoughts were gathered from the families GOD has placed in my life this year, their struggles and I hope I can do justice by putting them in words….

                I pray that no baby was born premature, they wouldn’t need life support, help breathing, surgery within minutes of entering this world just so they could survive. 

                I pray that no child be born with a  metabolic disorder, that their body can process the food they are given and they can just thrive on that.

                I pray that no child be born with an addition, deletion, change or we don’t know to their chromosome.   

                I pray that no child be born with any cephalic disorder, hydrocephalus, anacelphy, microcelpely, lisscepley and that they wouldn’t require surgery for a shunt just so they could survive, that no parent would hear them words your child won’t make it out of the hospital or if they do they won’t have any quality of life.  

                I pray that no child be born with a hole in their spine and require surgery after birth, leaving them without the use of their legs and no bladder control.

                I pray that no child be born with a congenital heart defect requiring emergency surgery shortly after birth, months, or even a year, that their chest not have to be cracked open, their heart stopped put on life support and then their chest be wired shut.

                I pray that no child need surgery for scoliosis, no titanium growing rods, no fusion of the spine. 

                I pray that no child get cancer, go through endless years of chemotherapy, radiation leaving them with scars for life.

                I pray that no child get a brain tumor.

                I pray that no child get seizures so bad that they can’t be stopped and it affects the quality of their life

                I pray that no child require a feeding tube just so they can eat, trach just so they can breathe

                I pray that no parent has to say goodbye to their child because they just couldn’t survive. 

                I pray that every child meets their milestones. 

                I pray that no child get over stimulated and can deal with trips to Wal-mart, family gatherings, church. 

                I pray that no mom, dad, grandma or family has to sit in the waiting room and hear the words from a surgeon, “this isn’t what I wanted for your child” 

                For now we are in this world so I know these things will happen, they have personally happened to me or families I have gotten close to through the years, some just this year.

                My prayer is for the all people and professionals who have touched these families life with such care and compassion, please continue, keep up the good work and know that families appreciate what you do, have done, will do for their child, family unit and their situation.   

                I pray for the professionals who will touch these children’s life, have compassion for that family, treat us differently because we all deal with issues and situations differently but we all want respect, we want our child to be treated like a person because they are a person but we were just given news that we don’t want to hear and wouldn’t wish it upon anyone, we do know our child it’s a 24/7 life for us.  You know it’s ok sometimes to give family the news, simply say, “do you have any questions” and if they don’t it’s ok to stand there in silence and not offer yet another philosophy about the situation, as often times we are processing the information. 

                We have other children at home and trying to juggle a child in the hospital and still provide some type of a normal life to the siblings. 

                Some parents are working 2 jobs because they don’t qualify for assistance to help them and some had to quit a job because no one would care for their child or the child is too sick to leave the home or else because their child has behavior and no one knows how to deal with them they were kicked out of daycare or the school calls every day to come get your child because they don’t know what to do with them.   

                There are single families, grandparents raising grandchildren because someone couldn’t deal with the card they were handed, some can’t physically, some often have a mental condition where they just can’t deal. 

                When we come to an IEP meeting ready to fight with boxing gloves on it’s because we are forced to advocate for our child when it should just be freely given, it’s what our child is entitled to yet it is made out to be something of an earned right or you don’t ask we don’t offer.   

                Home Health nurse we aren’t asking you to do anything other than your job, care for our child as if the child was yours.  

                To the church, please understand that some children can’t sit for long period of time, they have outburst that can’t be controlled these aren’t result of bad parenting, it’s a condition that just can’t be stopped so please tenderly minister to the family and extend the offer to help them.   Don’t judge the ones who can’t come because the child didn’t sleep the night before or if the child was to catch a common cold it could possibly be fatal.  

                To our immediate families please understand that sometimes we can’t make family reunions, every dinner or holidays can be a rough time, maybe our child hasn’t slept, we are exhausted, they are exhausted, maybe if they was to get around someone who had a simple virus, cold that it could result in a hospital stay, possible being put back on oxygen or even IV antibiotics, maybe our child doesn’t understand that everyone stuffs themselves with food but they don’t understand why they can’t.   It’s not that we don’t want to be there, it’s that our life is different than yours. 

                We aren’t bad parents, and we love our children so much that we would fight a polar bear for them, we have home health or HTS staff these people are there to help and assist us, we work full-time jobs and sometimes we are exhausted from working and then caring for our child with special needs, we need a break from always giving them medicine, making them get in their gait stander, gait trainer, putting on a back brace, AFO, fighting with them, transporting back and forth to therapy, lifting them endless days in and out of the tub, fighting with them to brush their teeth, wash their hair, we need an emotional break away and you know it’s nice for us to just get to be mom and dad for a change, play with our child and to just love our child.   

                Lastly, we aren’t super parents and we don’t want to be put on a pedestal like we are, we don’t want sympathy because of these things.  We love our child and want them to also have the best life they can, we want for them, a life full of happiness, health and friends and just love our child, get to know them, they are so full of personality, contagious laugher that can make your day and treat them for the person they are……..