When our now special needs son became sick over 5 years ago, my entire world was shaken up and turned around. I had been working so hard for years to avoid every chemical, additive, preservative, etc. from being put into our bodies, seemingly to keep our children healthy and away from the potential of auto-immune disorders that are so rampant in our culture.
But, almost overnight, all of our efforts seemed moot, because here we were facing not only an auto-immune disorder but an extremely rare one. It only affects 1 in ten MILLION people around the world!
I have learned so many lessons during this time of trial by fire and today I was reminded of all of them as I watched my already three-year-old son successfully pull up his own shorts all by himself for the first time!
It is amazing how simple life can become when our focus is on the right things.
7 Empowering Lessons I’ve Learned from my Special Needs Child
Lesson #1: Mother’s instinct is a REAL thing…trust it
When my son began to show symptoms of OMS and shake uncontrollably, my eyes seemed to be the only ones that saw it (read the beginning of our story here). I asked my husband if he saw anything…no. I asked friends with large families too. But, in my gut, I KNEW that something was wrong.
The same was true two months later after his week of hospitalization. We had been given one diagnosis, but it never sat well with me. As the weeks went on and he was not getting better, it was my gut that told me to look for another explanation. And we got it. His condition was not acute as they had diagnosed, but chronic.
Related: 30 Days of Prayer: Pray to Embrace Your Unique Walk with God
Finally, I trusted my gut and the path I felt the Lord wanted me on when it came to treating him. For me, the choice lay between trusting the institutions of conventional medicine to treat a chronic auto-immune disease (for which their dangerous paths were unknown and unproven) and following a different path with the help of alternative medicine (without the dangerous side effects, but with the potential risk of not working…though this risk was present in both paths).
I knew that allopathic medicine does not understand nor know how to help auto-immune conditions in most cases, besides interfering with the immune system’s ability to respond. I knew that God had been teaching me these things for 7 years prior. And I felt in my gut that this was a moment of truth.
Would I trust Him and the path that He put me on to work with alternative medicine for our special needs child?
This was truly one of the scariest decisions I have ever made, but with the best outcome ever: the health of my son.
Lesson #2: People will judge you, period. Stand firm.
We recently watched a movie called Miracles from Heaven that touched so close to home for us. There was one part in particular that was so much so that the weight of it made my husband leave the room.
The storyline is that a believing family has a daughter with a chronic disease of the intestines that is incurable. At one point a group of fellow church-goers approaches the mom in apparent gentility before unleashing this bomb:
Your daughter’s been sick a long time, and God would have wanted her healed. Maybe it’s time to examine yourselves and see if there is sin in your life that you haven’t yet dealt with.”
It hurts to think that this is a thing, but it is. In the struggles we’ve endured over the years, we’ve heard this at least a handful of times. It hurts greatly to be accused of such a thing as bearing enough sin to cause the sickness of your own child.
Where is the grace in that?
There have been other judgments too, from the outsider looking in, assessing how I could have done this or should have done that. The sad thing was that none of those people actually stopped long enough in their judgments to honestly ask me how I was coping with our sick child (and 4 others at home, including a 4-month-old at the time).
Not one reached out a hand to help. There was no one who offered to come to stay with me for a few hours to keep me company. Not one took the time to learn how life was for me through the crisis. Those who did never made such judgments. They were too busy loving me and serving to judge.
Related: Since When Did It Become Sinful to Need Help?
Those experiences taught me a LOT, especially about what I have come to know as “the Job season.”
During our darkest times, we have the opportunity to learn about our Abba, other people, and who we are to Him. Pleasing man no longer matters when we know that He loves us unconditionally and that we don’t have to perform in a perfect walk before He will be with us.
Lesson #3: Boundaries are a blessing to protect ourselves AND others
The aforementioned experiences taught me a lot about boundaries (which is why I wrote a whole post all about them). I could not be responsible for what other people thought of me, nor how they were going to interpret the choices that we made for our family.
What I am responsible for, though, is making sure that I make decisions and live in accordance with His Law and the grace and wisdom that our Abba has taught me throughout our journey together. As I learn how to put that into practice in my own life, I will be able to extend the same position of distinction to others and respect their choices, too.
It is the inverse of the Law of Love:
Treat others the way you want to be treated.”
The inverse though is that the way we respect and treat ourselves will inevitably be the same way we treat and expect life from others. If we think poorly of ourselves and do not show ourselves respect and love, we will not know how to do the same for others, no matter how much we might want to.
Lesson #4: We grow most through the TOUGH stuff (and special needs are tough)
In the years that I have known the Lord, the greatest amounts of growth and understanding have been through the valleys of hardship and trials. The same has been true since our son became sick.
I have grown so much in slowing down, being present, giving thanks for the small stuff, and appreciating the little mundane aspects of life.
His sickness brought an awakening in me to stop running from this activity to that activity and to stop and listen.
Lesson #5: Laughter is great medicine for the soul
I wish I could say that this lesson was one that I have easily applied in motherhood, but it is not.
Motherhood is a difficult road with the many twists and turns it presents, between varying personality conflicts, life changes and transitions, and figuring out how to do life at home, it has often been a long and lonely journey.
Related: Is Motherhood Hard? Yes, and You’re Still a Good Mom
But, the intensity of the difficult things has made times of joy all the sweeter. I cherish and deeply value the times when laughter can be enjoyed. I am still learning how to inject its blessing into the various nuances of the day.
Lesson #6: God is in control (even with our special needs kids)…and that’s a good thing
For many years, as I studied natural health and nutrition, I thought that it was possible to simply do this or that and avoid a litany of health issues in this life. I realize now that this is only a half-truth and one that sets up an “us against them” mentality. Health is not a sufficient god…truly it is weak and impotent in its reach (see more in-depth post on this here).
I remember earlier this year talking with a fellow mom who has a few children with health issues. She was frustrated because of the same false belief that because she followed a more natural way of living that it in turn should have meant perfect health for her children.
I shared with her the lesson that I believe the Lord most especially wants us to learn when in this paradox:
He is not teaching us to return to His natural provisions in order to hand us control over the health of our families, but rather to provide answers and a path to help us live when illnesses affect us in this fallen world.”
We cannot control EVERYTHING, like how much glyphosate is in our food, whether or not geoengineering is happening, and a million other things that happen far beyond our pay grade (excuse the military reference).
We can, however, do what we can with what we have where we are. And, many of us have been led down the path of natural health in order to do just that.
He’s the One in control of it all. It is our responsibility to simply follow where He leads.
Lesson #7: Compassion and kindness for others are valuable character traits
Every member of our family has had to grow through this season of our life. My oldest children (at the time of this original post only hitting ages 8 and almost 7) have had to discover a whole new level of the concept of “everything is not about me.”
They have had to help with keeping the house in order, protecting their brother from tripping, slowing down their days to accommodate his needs, being extra patient with me while I help care for their brother during school time, etc.
Related: 10 Character Traits to Teach to Children (and Ourselves) +Printable
Life with a special needs person requires self-sacrifice. This lesson has helped my kids to offer great understanding and extend friendships to the otherwise isolated children they have met.
I may not have chosen this path for our family, but I’m thankful for the lessons we have all learned along the way.
Stand Strong, Mama. You are not Alone.
Having a child with special needs is not always easy, but it carries with it an amazing privilege and calling that not everyone has the chance to experience.
We all suffer trials in our lives, one way or the other, and I believe that the Lord allows us to experience them so that we can reach a new level of understanding of His Character.
He is our Good Shepherd. He is our Provider and Security. Allowing us to experience this with greater depth is one way He shows His love for us, not letting us stay trapped by the belief that we are somehow in control of our lives or our provision.
Once we can let go of our controlling tendencies and expectations, we will experience His love, which is eternal and true. And, that is a beautiful lesson indeed.
You are so right. It is hard, but it is a special blessing as well.