Introduction
If you are getting ready to bring your baby home from the NICU or you have a child who has complex medical needs, this episode is for you! Being a parent is difficult, but when you have a sick child or one that requires extensive medical care, therapies, and appointments, it can dramatically change your life and that of your family. Today we continue to spotlight the importance of parents who have children with complex medical needs to work through their grief and trauma with professional help, how self-care is crucial but needs to be adaptable to your family’s lifestyle, and to recognize that “chronically ill children have chronically stressed parents.” Our guest, Alissa MacDonald bravely shares her personal struggles along with tangible advice as a mother of a child with complex medical needs.
Alissa MacDonald is a NICU nurse who just graduated from NNP school at Baylor University with her DNP. She continues to share her personal experience, knowledge, and advice as a mother of a child with complex medical needs. Alissa and her husband Matt became foster parents and they ultimately adopted Tegan, a former 24 weeker who spent months in the NICU. And sadly, since his discharge from the NICU, he has been ridden with multiple complications, several life threatening scares, PICU admissions, and debilitating diagnoses including but not limited to reactive airway, cerebral palsy and autism. If you have not already, I strongly encourage you to please go back and listen to Episode 23 and Part I of Life After NICU With a Medically Complex Child: What is the Reality?
In this episode, we discuss how Alissa recognized that she needed to get help from a professional therapist and how her therapist has guided her to work through and identify the root cause of her feelings and emotions. Alissa identifies ways that parents of chronically ill children can participate in self care, but is also quick to point out that it will need to be adaptive to their lifestyle and will likely look different than self care that other parents or social media talks about. She speaks to the importance of finding the right support group or community, acknowledging that your significant other and you will unlikely process trauma and stress the same way, and that it’s okay to admit that you’re not okay.
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Episode 23
Meet Our Guest
Alissa MacDonald
Alissa MacDonald is currently a NICU nurse who just finished her Neonatal Nurse Practitioner program at Baylor University and received her DNP. She and her husband Matt have three boys, two of whom they adopted out of foster care this year. Her professional and personal lives collided in 2019 when she and her husband received a phone call for foster care placement of a former 24-weeker who was in the NICU where she was currently working. Tegan came home with the MacDonald family in July of 2019 and their lives forever changed. Almost 3 now, Tegan is happy and thriving at home despite many complex medical needs and disabilities. Alissa is a proud preemie mama, a fierce advocate, and a mother who is devoted to helping other families navigate the complex post-NICU world.
Tegan’s NICU course and how he became part of the MacDonald family
Tegan was delivered emergently via a cesarean section at 24 2/7 weeks. He experienced a fairly typical course for a 24 weeker. He spent time on the high frequency jet ventilator, had a bout of sepsis, chronic lung disease, and had his PDA coiled. He has endured long-term complications related to his airway trauma, chronic lung disease, complications from his PDA coil, feedings problems, and aspiration. The majority of his complications arose when he was 40 plus weeks corrected gestational age and was unable to be weaned off of oxygen and could not bottle feed. He spend 6 months in the NICU. Alissa shared that Tegan has since been diagnosed with cerebral palsy (CP) and autism and has global delays.
Alissa and Matt MacDonald started the foster care process in January of 2019. Alissa had actually taken care of Tegan in the NICU where we both work. They were in the final stages of finishing up their paperwork to become licensed foster parents and they received an unexpected phone call while camping. They were informed that they had a child for them in the NICU and quickly learned that it was Tegan.
Initially, Alissa was unsure if they were ready as a family for Tegan and his potential long-term complications. He was still oxygen-dependent and Alissa knew he was likely to have complex medical issues. But, Matt wanted to meet him. He held him one time and fell in love! Alissa and Matt officially adopted Tegan in June of 2021, 2 years after they brought him home.
The additional stresses Alissa endured due to her medical background
Alissa felt blessed to have medical knowledge while Tegan was in the NICU and later during his PICU admissions, but it also brought on additional burdens. Due to having a full understanding of Tegan’s blood gas results, X-Ray findings, echocardiogram results, or changes in his respiratory settings, Alissa was not ever able to get reprieve from their reality. She never had an opportunity to be naive to just how sick Tegan was while in the PICU during his repeated admissions.
As the MacDonald family endured constant changes in Tegan’s plan of care, new diagnoses, treatments, and medications, compounded with making significant decisions on Tegan’s behalf, Alissa felt the weight of the world on her shoulders. Plus the compounded stress of Tegan’s daily and nightly cares, including waking up each night to administer medications, Alissa felt herself spiraling. She was able to get up each day and night and continue to do what needed to be done physically for Tegan and their family, but mentally she was falling apart.
Receiving help from a professional therapist
Alissa strongly believes that chronically ill children have chronically stressed parents. She now looks back and realizes that both she and her husband, Matt had been in “survival mode” especially during the first year after bringing their son Tegan home from the hospital. But a year into Tegan’s arrival at home, she realized that she was experiencing depression and many panic attacks. She was consumed with the fear that Tegan would not make it and it would be her fault for not recognizing his decline in a timely manner.
Due to her inability to step away from home for therapy, she became connected with Talkspace since they offer virtual therapy sessions. Alissa’s therapist helped her to discover the root of what she was feeling. Alissa constantly felt anger and jealousy and she was manifesting it in all of the wrong places. What she learned was that she was really experiencing trauma and grief. Trauma due to so many scary times at home and in the hospital with Tegan as well as grief for the loss of his childhood. Once Alissa was able to identify her main feeling as grief, she was able to come to better terms with it.
Why seeing a professional therapist is important
Taking the first step and admitting that you may need to speak to someone professionally is very difficult. For me personally, it took me years to admit and ultimately realize that I was not being my best self. I had a large amount of anger and jealousy as well after my stressful pregnancy, traumatic delivery, William’s time in the NICU, and after our losses. I was snapping at my family and just not being the best mother, wife, daughter, or NNP that I could be. And unfortunately, it took me years to realize it, admit it and then find a therapist.
Any parent who has had a child in the NICU or PICU has endured trauma. It is traumatic to helplessly watch your child suffer and fight for their life. But, if you do not find a way to work through your trauma with professional assistance, you will just carry it with you. For those parents who have chronically ill children at home, it is not sustainable for you to be stressed, exhausted, worried, and not have someone to help you through it all. Parents with medically complex children have a long journey ahead of them and will need healthy coping mechanisms to get through each day and year ahead.
Self-Care
Deep Breaths
Alissa said for her self-care starts with something as simple as taking a deep breath. Her therapist made her realize that due to being chronically stressed, that she was chronically holding her breath. She encouraged her to pause whatever she was doing and take some deep breaths when she was feeling overwhelmed or stressed. By doing so, it helps to shift her into a calmer state of mind and more able to cope with the current situation.
Meditation
Alissa tries to practice meditation to help calm her and keep her mind focused.
Exercise or Yoga
Alissa enjoys practicing yoga and said you can practice right in your home with free yoga videos on YouTube. She also enjoys running when Matt is home as it helps her to process many of her emotions. She listens to inspiring music, prays over Tegan, and imagines him being able to run someday. Alissa set a goal to run a half marathon and completed it. Even when it was physically tough for her, she quickly reminded herself that everything Tegan does is difficult for him compared to most children his age and keeps going.
Prayer
Alissa strongly believes in prayer and it has helped her get through many difficult times and days.
Talking to Friends
Supportive friends are key to get through difficult times. Alissa has also found a unique and supportive group of friends who also have children with special needs and they have helped each other out immensely.
A Supportive Community
We recommend finding a supportive group or community, but Alissa is quick to caution you to find one that fills you and doesn’t drain you. Without the right type of support, groups can actually bring you down rather than build you up.
The importance of understanding that your significant other will not respond to stress exactly as you do
When your significant other handles their stress or trauma in an entirely different manner, it can become very frustrating. But we all need to realize that men, women, and every single individual will process their emotions differently. It is important to recognize how your significant other is working through their stress, but not respond negatively to it.
Couples need to make their relationship a priority especially if they have a sick child in the NICU, PICU, or one with complex medical needs. Relationships have an additional layer of stress on them for parents who have a sick child or if they have endured the loss of a child. They need to be intentional about working together to get through it and should consider receiving help from a professional therapist together. If the marriage or relationship is not healthy, it filters down to the rest of the family
The importance of inclusivity
Alissa and I discussed how difficult it can be as a parent if your child is ever ridiculed or excluded due to being different. We both agreed that our protective “Mama Bear” instincts take over and it’s very difficult as a mother to see any type of negativity or exclusivity especially when it’s directed at your children.
Alissa spoke how difficult it is for Tegan to be in public. With his autism, he becomes very overwhelmed and agitated. Alissa’s focus when this occurs is to ensure Tegan is alright and she removes him from the situation. But sadly, she pointed out that adults especially have been very inappropriate at times with their responses or questions while they are in public. She encourages children to ask questions, but for adults, she reminds us that we are not entitled to any sort of explanation regarding others. We encourage support for all families and encourage building each other up as opposed to making negative comments or tearing each other down. It means the world for any mother who may be having a rough day to hear praise or encouragement from others. Basically, if we cannot say anything nice, it is best to say nothing at all.
Advice from Alissa for families who have children with complex medical needs
Acceptance
Alissa strongly reminds everyone that it is important to admit that’s it’s okay to not be okay. As a parent of a child who is chronically ill with disabilities, developmental delays, and/or complex medical needs life can be incredibly difficult, and it’s okay to admit that.
Grief
She reminds families that it is okay to grieve the things that are not okay with your child. If they experience developmental delays, have a chronic illness, and struggle with daily activities that seem to be a breeze for other children their age, it’s okay to grieve the loss of their childhood and inability to run, play, walk, talk, and so much more.
Seek professional help
Alissa strongly believes that as a parent of a child with complex medical needs, it is crucial to get professional help. She feels that too many parents wait too long or do not admit that they need assistance. The daily stress and struggles of a parent with a child who has a chronic illness are not sustainable without additional support and therapy.
Self-Care will look different
Alissa reminds us on the importance of self-care and that it will look different than it does for other parents on Instagram. You must make self-care a priority, but find ways to make it adaptable to your family’s lifestyle. She reminds us that parents should do activities that feed and fulfill you. Whether it is reading, yoga, meditation, or prayer, prioritize it and make it a consistent part of your daily activity.
Find a support group
She highly recommends parents to find a support group that offers positive encouragement. Whether it is on social media or in person, ensure that it does the group does not involve heated discussions or polarized topics. Negative groups can make parents feel more stressed or encourage comparison, leaving parents feeling defeated or as if they are not doing enough for their child.
Find an outside outlet
Lastly, Alissa encourages parents to find activities that fulfill you and allow you to step away from your stressful parental role. Whether it is reading, art, fashion, or whatever feeds your heart, do it to get some reprieve from your daily stresses. She recommends groups on social media beyond those that relate to your child otherwise, you can never fully escape the stress.
Closing
Alissa, I cannot thank you enough for giving our listeners such great insight and for sharing your family with us. I appreciate you bringing awareness to many of the real, daily struggles all parents endure, but especially those with children who have complex medical needs. It is so important for parents to know that they are not alone in their journey. Many parents suffer silently. If you are a parent in general, or one that has brought a baby home from the NICU either on oxygen or with even more extensive medical needs, please know that you are not alone in some of the anxiety, anger, or fears you are experiencing.
But, we strongly encourage parents to take the first step and get professional therapy or counseling to support you through your family’s journey. Remember, any time your child spent in the NICU or PICU will cause trauma. Do not ignore the signs or wait as long as I personally did to seek help. It does not mean that you are weak, it actually makes you stronger to accept help and you will become equipped with tools to help you cope with your parenting role whatever that may look like for you. It may also be beneficial to consider therapy with your spouse or significant other to help you work through how each of you are coping with the trauma and stress.
Also, as Alissa mentioned, find a way to fit in self-care for yourself. And although it may look different or need to be more adaptable to your family’s lifestyle, it can be done with reading, prayer, yoga, meditation, or exercise. Join groups and do things that fulfill you and build you up, not knock you down. Remember, if you are not healthy physically or mentally, you cannot be the best mother, father, or spouse and it will affect your entire family.
And lastly, let’s all remember to be kind and to teach our children kindness and inclusivity. Even if our generation is not doing the best as Alissa mentioned, let’s change the narrative for our children and their future.
We hope you can join us next time! In the future, Alissa and I will continue our discussion as she shares ways to overcome many of the obstacles placed before parents with children that have complex medical needs including but not limited to insurance rejections, equipment issues, denials, plus so much more.
We hope you can join us next time! As always, please share this podcast episode with someone who would gain some value from it!
Contact Alissa MacDonald
Remember, once empowered with knowledge, you have the ability to change the course.
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