My Child is Different, But He is Wonderfully Made

My Child is Different, But He is Wonderfully Made


Have you ever been a mamma bear and you watch someone bully your child or treat them differently because they are not the same as other children? I can understand that a child, may not understand, but adults do and need to set an example for their kids. Children learn what they see, hear, and are told. One of the first things that children are taught in the Bible is always ” I am fearfully and wonderfully made.” Psalm 139:14. They are also taught that Jesus loves the little children. So wouldn’t that mean that if a child has intellectual disabilities that they too are loved by Jesus? Are they not capable of being loved by others even if they are different?

I was moved today to write about an incident that to some may seem like an innocent gesture but to a mom who is tired from working 16 hour days as a nurse some weeks 7 days per week with a special needs child that has been distance learning for almost three months, and is now in virtual summer school, with lots of energy to give, it is hurtful. I sit writing with tears in my eyes not because my feelings were hurt, but because my little boy noticed that he was made to feel different and really can’t comprehend why.

My son was born 13 weeks early, he is a miracle. He was given a 5% chance of survival, he is immune-compromised due to his little lungs, he has 1 kidney, and is underweight. But guess what? He has a heart full of love for all that he meets, he loves people, and is the sweetest little boy. He does not know the color of skin, race, or disabilities, he only knows love. Why, because my husband and I instill the values in him to love everyone. But today on a zoom call made for kids, he was cut out of a video zoom class that was made for kids. We had him on silent because we know he can sometimes be chatty but he was making funny faces while he sat and looked at himself in the little video box honestly may have been a little bored because he is on these zoom calls daily for distance learning. But as a mom we always want our kids to get nurtured in groups that we think will make a difference in their lives.

All of Kaleb’s school teachers embrace him and know he is a handful but they love him just the same and find coping skills to help him. His hyperactivity is not something that can always be controlled, but trust me this little boy tries hard. If you told me ten years ago that we would be enduring this and would I want to terminate the pregnancy because we spent 162 days in the neonatal intensive care unit, with a little boy that is special needs, and only has 1 kidney, and may require help with making decisions later in life, I would say no. I would do it all over again. God placed this little boy in our lives for a reason. Through the test that we endured, we created The Gift of Life, an organization that supports parents of premature babies while they are in the neonatal intensive care unit. Through our hurt, we knew that we could take a mess and create a message that would reach many to help them find comfort in knowing that they are loved and supported no matter what race, religion, socioeconomic status, or nationality they are.

God never gives us more than we can handle and He knows who can tolerate a test. He really must think we can handle it because in these last three months, my test of trials has been huge. My husband and I vowed that we would do the best for our son and never let him down. We have my mom who lost her eyesight due to diabetes and a retinal detachment shortly after my dad passed away unexpectedly so therefore she stays with us. We have two puppies that keep us busy but fulfill our lives too. We wonder why all of this with COVID-19 surfaced and now with the Floyd murder and the violence that some groups are creating. With all of this, it is enough to send someone over the edge and totally give everything up, But I have had some strong women in my life.

Anitra Manning that is on our board tells me that I matter and what I am doing in the community matters so I need to hang in there, She loves our Kaleb so much, he is her “little buddy. “

Elisa Planellas our executive director who moved to Florida 1.5 years ago to help run the charity. She was running the charity for four years from a distance and then said she needed to move close to help us more. She takes care of our websites and gives freely of her time and never asks for a dime, on the contrary, she gives of her time and money to the charity through the services she purchases to run our digital website. She is another person that loves our Kaleb and keeps him entertained with her witty questions that make him think.

Ms. Melanie Johnson, Kaleb’s kindergarten teacher who always checks on Kaleb and me and sends me encouraging messages and support to hang in there. She was the first teacher to assure me that Kaleb will learn everything in his own time. She was so right!

Mrs. Nicole Pagan, Kaleb’s 2nd-grade teacher, this woman is a saint, there is so much that she has done throughout the years to go above and beyond the call of a teacher duty to help my family. She loves our Kaleb so much and looks out for his best interest always. She always includes me in her kiddos storytimes even after Kaleb has moved on beyond 2nd grade.

Alexia Rivera, God bless this girl, she has the patience of an angel with Kaleb. She supports me in every way that she can with her positive words and encouraging thoughts. She is one of the most thoughtful people I know. She has the gift of comfort and support. She loves our Kaleb as if he were her family.

Ms. Rosa, one of Kaleb’s teacher’s aides at school, you have to meet her. She loves our little miracle like her own. I never have to worry when he is in her care because she has just loved on him and me.

Ms. Kelly, this woman has been all that Kaleb talks about when it comes to his inflatables. She helps his creativity and looks for ways to bring his little heart joy. She is one of the aides in school that always has a watchful eye for our Kaleb.

I apologize for the long post, but I really wanted to point out that there are people that will love my son for who he is and not treat him differently because he is different. You just have to get to know him because he will melt your heart. Like my other favorite person in the world, Mrs. June Ings calls him, the little senator. He got this name when she attended our first charity gala and watched our little Kaleb, then 5 yrs old, greet people with a handshake like his dad in his little tuxedo and tell people that he was Kaleb with The Gift of Life. Mrs. June has always been there for me especially when I myself have experienced racism and bullying.

So today I leave you with these short verses:

John 7:24 “Do not judge by appearances, but judge with right judgment.”

Acts 10:34-35 “So Peter opened his mouth and said: “Truly I understand that God shows no partiality, but in every nation anyone who fears him and does what is right is acceptable to him.”

Romans 2:11 For God shows no partiality.

John 13:34 A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.

So you see to the person that excluded a little boy today from a zoom call because he was making funny faces in an environment that was supposed to be fun for kids, I say, think about what Jesus would have done at that moment. Kids are not perfect by any means, but special needs kids are definitely not perfect either, but they have something that many wish they had, unbiased love for other people.

Caring for Patients Through our Comfort

With so much fear happening right now as a result of COVID-19, there are many patients that are in fear of dying and asking for prayer.  In some hospitals, many staff will be more concerned with their agenda and not the patient’s thoughts or concerns.  Our own beliefs as a nurse can impact a patient in many ways.  For instance, if you find yourself in a Christian Hospital where praying is okay with a patient and encouraged, and you feel comfortable asking the patient if they would like to pray, then you would do that.  Now in the same situation, if you are a nurse that is not very religious but work in a Christian Hospital and a patient asks you to pray with them, it can be very awkward for the nurse.  The nurse can let the patient know that she will stay there as the patient prays and a warm touch of the nurse’s hand on the patient’s hand can be all the comfort that the patient needed (DeNisco & Barker, 2012).  However, many staff will be fearful to do this because of COVID-19.  But remember even through a mask, gown, gloves, and a face shield, we as nurses and healthcare givers can still provide someone that is afraid that warm and caring support and a smile that will let them know we care.

References

DeNisco, S. M., & Barker, A. M. (2012). Theory-based advanced nursing practice. Advanced practice nursing: Evolving roles for the transformation of the profession (2nd ed., pp. 5-18). [Vital Source Bookshelf]. Retrieved from https://campus.capella.edu/web/library/home

 


Source: Rosie’s Nurse Corner

United in Prayer for our Nation!

United in Prayer for our Nation!

Today is National Day of Prayer and with everything that is going on globally and in our back yards, we all need to come together and pray not just today, but daily!


There is fear about what our economy is doing, our physical and mental health is being compromised, and it also seems that our constitutional rights along with our Biblical values are being affected. Many people both Christian and Non-Christian are saying, this is all crazy hype, where is your God? Don’t you have faith? These are the times that you bend down in humbleness to God and ask for wisdom to answer the question. My answer is not that we do not have faith or fear, it is that God gave man the intelligence to treat mankind from a health standpoint and we need to follow what the guidelines recommend to help each other. I know it is easy to complain about the circumstances, point fingers to find fault, and say this is not going to work. But what if in our obedience it did work? What if we humble ourselves and pray? What if God listened because it says in Matthew 18:20 “For where two or three gather in my name, there am I with them.”


America needs our prayers. Today is May 7th, the National Day of Prayer. It is the official day that has been set aside to remind us that our country was started in prayer before any major decision was made. But somewhere along our history, our nation turned their backs on God. We have as a nation decided that we can do all things through our own strength and intelligence and we do not need to credit God for it. This coronavirus has put us all in a state of standstill. It has made us realize that Yes, we do need God and His wisdom in order for our leaders and doctors to make the right decisions. I know many in this world criticize our mayors, governors, and president, but guess what? Look at where we are, we are at home sheltered, we do not have decision making powers except to follow the guidelines laid before us. So what can we do? Pray for our leaders, doctors, nurses, and other healthcare workers so that God impacts wisdom on them and protection as they take care of us. Pray for ourselves and our families that we can draw closer to God, love one another, help others, and come out of this in a manner that will remind us to just be kind and care about what matters most, people’s hearts. Many will be affected by this due to job loss or health concerns and maybe even death. We can only get through it and help each other when we care to pray and help others.

So today, pray for God’s mercy on us. We may not be able to get together with friends and family especially some moms for Mother’s day, we may not have graduation ceremonies, weddings, or gathering together to worship God in church, but as Pastor Chuck of Family Church says, the church is not the building, we are the church, so go out and Be The Church.

Amen!


Compassion Comes from the Heart

As nurses, we have the ability to use compassion and genuinely want the best for our patients.  We understand our patients and want to help them find the best treatment that will help them.  There are also nurses and doctors who do not exercise cultural competence in what the patient’s beliefs and wishes are.  As nurses, we have to validate our patients’ feelings of fear of not being able to provide for their families.   Many hospitals have case managers who focus on the hospital losing money and allow patients to treat at their facility but if they do not have insurance, they are very quick to send them elsewhere.  Many times when this happens, these case managers that are gatekeepers, are not thinking of the patient’s safety.

Social workers and nurse case managers are the peacemakers in these delicate situations, involving patient advocacy.    A good nurse case manager will identify the problem right away and diffuse it so that the focus is back on the patient.   Sometimes our culture in America imposes our beliefs on others thinking that they have to accept a specific method of treatment, but the reality is patients have a choice.  If a choice is explained well to someone, they will make the right decision.  We as healthcare providers have to explain things to the patient and family to help them understand and make an informed decision.

The skill that the staff needs to learn about caring for patients from other cultures is to remember that we as healthcare providers have to be sensitive to someone’s beliefs or culture.  Just because they do things differently does not mean it is wrong, it is just different.  We as healthcare providers have to be respectful (Barr & Dowding, 2012).

Cultural expectations were seen in my previous job while I was the manager of a team of nurses and social workers.  There was a manager from England and then there was myself,  of Hispanic background.   The majority of my team was from a different culture.   There was a nurse on my team who was great, but she spoke with a thick island accent, however her patients loved her.  The other manager like myself was from England. During a case presentation, the other manager stated how hard it was to understand her and she should not present again.  I stated that was not a fair statement because she presented cases and her skills and case were valid.   The other manager did not reply to my statement verbally but she made herself known by challenging everything I said in the future.  It is instances like this that discourage people from staying in jobs.

References

Barr, J., & Dowding, L. (2012). What makes a leader? Leadership in healthcare (2nd ed., pp. 32-44). [Vital Source Bookshelf]. http://dx.doi.org/ Retrieved from


Source: Rosie’s Nurse Corner

Leadership and Ethics

The ethical situation that comes to mind this week is religious ethics.  This theory focuses on religion, which is depicted by the parent’s upbringing and the older family members typically.  One particular faith, Jehovah’s Witness, does not allow for blood transfusions.  This is very important when you have a baby in the NICU (Neonatal Intensive Care Unit) that is in need of the transfusion and the parent will not consent.  The treating neonatologist will need to get a court order to do the transfusions.  In an extreme emergency, if two doctors sign off that it is an emergency, then the baby will receive the transfusions while they await the court order.  As a parent of a premature baby myself, I could not imagine not doing everything I could to save my child.  But in this case, the religious code of ethics is based on the upbringing of the parent (Denisco & Barker, 2012).

The parent refusing to allow treatment of transfusions to their baby would be a hindrance to the baby’s care, while at the same time as nurses we are trying to promote a  family-centered type of care involving the caregivers in the decision making and treatment  (Meadow, Feudtner, Matheny Antommaria, Sommer, & Lantos, 2010).  When my baby was in the level 3 critical NICU, they had open rooms, because the babies were too critical to be in closed rooms.  I watched a baby in front of us get sicker by the day and hearing the nurses and the doctors speak about the need for a blood transfusion and other treatments.  By the time they gave the baby the blood transfusion, it was too late, and the baby was terminal.  You as the parent are watching and hearing this because, in this type of critical setup, there is nothing between you and the next bed except a curtain and in front of you there is not a curtain.  As a nurse I thought to myself, how can they be having this discussion right in the open this way? As a parent I thought, how can these parents watch their baby die? I thought about how those nurses felt and if I were the nurse in that situation, what would I have done?

With the use of religious ethics, we may not agree with the family, but as nurses, we need to respect the other person’s customs and beliefs as long as the baby is being taken care of and there is not a medical threat to the baby’s life. When I stop and think about the nurse manager that was supposed to be the example, all we heard from her was complaints about the parents and how ignorant they were.  A part of me agreed, however, the nurse part of me, the part that is compassionate with the parents dealing with a decision they probably hate to make came out.  I said to the manager, we are all very much entitled to our opinions and they may not be the views of our patients, but in this crisis, we just need to support the parents because the baby will receive a transfusion whether they agree or not by court order.

References

Denisco, S. M., & Barker, A. M. (2012). 25. Advanced practice nursing: Evolving rules for the transformation of the profession (2nd ed., pp. 569-581). Retrieved from https://campus.capella.edu/web/library/home

Meadow, W., Feduter, C., & Matheny-Antomennaria, A. H. (2012, April 13, 2010). A premature infant with necrotizing enetrosoliteis. Special Articles-Ethics rounds. http://dx.doi.org/10.1542/peds.2010-0079

 

 


Source: Rosie’s Nurse Corner