6 Things I Want Mothers of Special Needs Children to Know

Dear mother, you are scared, you feel lost, you feel paralyzed. You feel completely alone.

As a mother, watching my son live with his CP, and start to articulate his experiences with it, I’m usually in awe at his matter-of-fact statements, but especially his questions, his stories and his persistence. For a long time, perhaps the better part of the last two years, I have struggled, and except for a few close friends and my husband, I’ve kept it to myself. I’m not one that wants to admit I don’t know what I’m doing, or that I’m scared as hell, lost and flying by the seat of my pants. It’s hard to articulate these things, especially while living through it.  It has taken me these long two years, nearly three years really, to find the words, the feelings that match and to make sense of everything that has changed, happened and that I’ve experienced. After years of praying to Mary, to her Son and to God, through countless hours of talking to my husband, friends, doctors, OTs, PTs, Speech therapists, and behavioral therapists, I have found that healing that I so badly needed. A healing that has revived my spirit beyond what I can express, allowing me to feel fully alive again, to function better and connect to the outside world in ways I hadn’t in some time.

I want share here a little of what I have learned and experienced, because other mothers need to know they are not alone, they are not crazy and this is hard.

So hard.

6 Things I want Mothers of Special Needs Children to Know:

  1. When you get the diagnosis it will be like nothing else in your life. Reality will forever be altered and life will not be the same. I personally felt in a daze for a long time. I probably lost contact with so many long distance friends and family and I’m just now starting to reconnect. I had horrible mood swings, a permeating sadness and confusion lingering under the surface. . It wasn’t as if I my son was dead, but I was grieving, I was grieving the life I had expected, the future I had anticipated. It was devastating.
  2. Coping is not easy. In fact, it down right impossible some days. Being “good enough” takes on a whole new meaning, and the emotional roller coaster is just getting started. Seemingly minor things such as my son not being able to run with kids who were much younger than him would put me out. I wouldn’t cry right then and there (not much of a public crier back then) but my heart would hurt, a deep ache settling in to what felt like my soul.  It takes a whole new kind of courage, one you have no idea how to access or maintain. I was lost.
  3. Yes you are now your child’s medical expert, secretary, nurse, therapist(s) and mother all rolled into one. It’s incredibly exhausting and downright terrifying. How on earth can I do this and still be me at the end of the day? How can I go about meeting people, making friends and living life? In short, you can’t, not easily, not usually. I could write (and probably should) a whole other post about how society has let mothers of special needs children down. It is a lonely lonely road.
  4. Now let all these previous points go. Forget them. Look at your sleeping child. Aren’t they the best human being? Truly God’s gift and He chose you, you to guard, raise, care for and love this child. I mean love in ways unknown, to depths unknown. You are the woman who gets to hold, cherish and dote on this amazing human being. Let it just hit you. Find a way to feel that joy. It is there, and it will help you overcome all the hard times. It is so incredibly easy to lose sight of the child among the diagnoses, the doctors visits, therapies, IEP meetings, frustrations, battles, let downs, discrimination, hatred, and anger. Don’t let it! You’ve got this. It may not feel like it, but you do.
  5. Don’t shut out the world, your friends both new and old. I did this, to some extent and it’s been a long climb back. I almost feel as if I lived in a hole for a couple years, just now resurfacing to feel the sun on my face again. If someone doesn’t understand, don’t explain for the 100th time what you are dealing with, just ask them to be there for you. Gosh writing this, I can’t even imagine feeling the courage to do something like that a couple years ago, but oh how I wish with everything that I had done so more. Going this already lonely road, even more alone will do no good. Find supports, use them often and don’t worry about being weak. Weakness is not bad, on the contrary weakness humbles us enough to know we cannot go this alone, and we then learn and grow. Which is exactly what our children need us to do.
  6. For those of you who are religious, pray. Pray every single day, without fail, as often as you can manage. I prayed, and begged, and prayed again. Mary, Mother of God who watched her son suffer surely would have immediate comfort, but only minor comfort was given. God would have answers, I simply needed to pray and wait a little while, but only small revelations occurred to me. Jesus assure me and help me, but only slight assistance came. In time, I realized I was going about this wrong. Mary, Mother of God make my heart like yours, help me to accept this condition of my son and aide my son in anyway possible to lighten his load. God, I do not know your will but help me to accept, give me the wisdom to help my son, and the courage to come to his protection. Jesus, thank you for your suffering, help me understand the grace that comes from suffering and help me teach my son to overcome.

Dear mother you are brave, you are wise, you are so incredibly capable. I hope you know you are not alone.

 

 

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