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Who has time for a support group? Not you. You’re already stretched to the max.
If your baby is still in the NICU, you’re there whenever you can be. When you’re not in the NICU, you’re at home sleeping or spending time with your other child(ren).
If your baby has been discharged, then you are hunkered down at home trying to avoid his or her exposure to viruses. Or, you are implementing an intense therapy schedule in between naps and feedings and of course, specialist appointments. It’s a lot.
And if you are a NICU momma who has suffered loss, you are in a whole other place of being overwhelmed emotionally.
So, who has time and energy for a support group? You don’t. Yet it may be one of the most helpful things you do for yourself and your child.
After my second NICU baby, I realized that I needed some form of support. I was grieving the loss of a normal birth experience (again) and the multiple medical complications of my son. I felt very alone and I needed to talk to others who could relate to what I was going through. I needed to hear their hopeful and encouraging stories.
Support has looked differently over the past couple of years but whatever its conventional, or unconventional form, it has been very helpful to me.
In her book, The Gifts of Imperfection, Brené Brown lists five of the most common factors of resilient people:
1. They are resourceful and have good problem-solving skills.
2. They are more likely to seek help.
3. They hold the belief that they can do something that will help them to manage their feelings and to cope.
4. They have social support available to them.
5. They are connected with others, such as family or friends.
These factors of resilience are based on research. I am struck by how many of these factors involve being connected to others in some way. Resilient people have some sort of support system.
When my son was still in the NICU, there were a few options available for support groups. The social worker at his NICU organized a group that met weekly in a conference room. Sometimes we met to talk about a particular topic, sometimes we did a craft together like scrapbooking a baby book, and sometimes we simply shared our war stories.
The most helpful form of support when he was in-patient was actually not a formal group however, but our team of nurses. My husband joked that to be a NICU nurse, you also need a degree in counseling. We were also blessed to have some nurses connect us to other parents in similar situations who were able to provide another layer of support.
It was during our NICU stint that I reached out to Hand to Hold. I started reading the stories of other preemie and special needs moms on this very blog. Those stories helped me feel not so alone. I contacted a couple of PreemieBabies101 bloggers who had medical issues similar to ours and learned from them. The internet and social media have opened up a whole new way to build a support system. You are truly only one Facebook search away from a group that could meet some of your needs for connection and information sharing.
In addition to noting the commonality of having a community of support, Dr. Brown went on to say that those who are living wholeheartedly in the face of adversity have a shared and deeply held belief in God, or spirituality. Once my son was at home and stable, I’ve been able to get more connected to a traditional type of support group that married the type of community I needed with a faith in God. I found a group of special needs moms who meet at a local church. The group meets once a month which is about how frequently I can handle. Their stories and shared struggles provide a boost in my mental endurance of my son’s diagnosis and a dose of inspiration.
So, when considering whether or not you can put yet another thing on your calendar, know that you have a lot to gain from a support group:
- Shared experience in making critical decisions about your child’s medical issues and development.
- Exchange of practical information that will be helpful for your child i.e., good dentist, therapists, preschools, and special diets, etc.
- Advice getting financial resources. Who has had success and why?
- Sounding board for emotional trauma.
- Strength in numbers for influencing government programs and legislation changes.
- Play dates with other preemies or special needs kids.
By joining a support group, you’ll fortify your resilience. You’ll even become someone else’s support by sharing what you’ve learned.
What would your optimal support system look like? Have you found a traditional support group helpful? How about online? Are you reluctant to reach out for support? If so, what are some of your hesitations?