Six secrets...

This sweet boy is one of my centers.
Today I received a post on Facebook from on of my dear friends whose son has Myotubular Myopathy, which is the same disease my youngest son has. This post was a link to Special Needs Mom's blog and the Six Secrets a Special Needs Mom never tells you...I loved it and decided that I would take her idea and put my own twist on it! I have never, before today, really thought about these things...not enough to speak them aloud. After all, these are the private thoughts of a mother with a child with special needs, thoughts that so many are afraid or ashamed to admit.

So here they are 6 secrets...I am sure there are more, but these are the one's I will address tonight.

1) Special Needs Mothers are lonely...
If you know me, you know that I am outgoing. I was raised by a mother that was outgoing and, frankly, if I had been a wallflower, I wouldn't have survived. Being a strong woman was a necessity, but strong is often equated with outgoing. My family thinks I have many friends, they think that I can do many things, but in reality, I am lonely.

It is hard carrying a world that so many don't understand on my shoulders. Many nights, I am exhausted, just from the days and nights. Only other special needs mothers truly can understand what it is like because we speak a common language, we live in the same world. It is entirely possible to be surrounded by many and still lonely, but it is true. I am grateful for those who understand this life...grateful for those who know me and accept me for who I am.

2) Special Needs Mothers need to work harder to preserve their marriage...
In the early years after our sweet boy was born, my husband and I spent many, many times apart. At the time, we had been married for just 2 years, our sweet boy was an unexpected gift, and we had just gotten custody of our sons, plus our girl already at home. We were working to keep our family together, putting out fires, trying to keep our lives afloat.

In the 11 years of our son's life, we have learned to sleep on different schedules, keeping an ear for equipment sounds. Our life has been a crash course in medical lessons, family episodes, we have survived three teenagers, some very close calls with the sweetest boy, and other family issues. Recently, we have begin to go out on dates together...this has been a gift....a chance to reconnect and enjoy each others company.

3) Special Needs Mothers aren't easily offended...
Really, not easily at all. When you spend a lot of time in the hospital, you actually get a bit of a thick skin...well, if you are going to survive it emotionally. I don't mind you asking about my son, let me tell you his story. I might make a joke that seems strange, but know that it is a coping mechanism formed over 11 years. We are made of some strong stuff, special needs mothers...it is the only way we have made it through the grueling trials so many have suffered.

4) Special Needs Mothers worry about dying...
I not only worry about what might happen to my son if he is sick, but, even more so, I worry about what would happen to my son if something would happen to my husband and I. After all, there are not many who know how to take care of him. My own family is not well versed. They are not prepared to take him on. At this time, our older children have agreed to become his guardian, but at 19, 23, and 24, I realize the burden of responsibility that would be placed on them. I believe there are other people in our life who would step up, help them, but it is still a worry. Wondering if your child is going to make it, shouldn't be the thought a parent has during routine sicknesses, but this is what happens to me.

5) Special Needs Mothers are fluent in the language of touch...
My son is a toucher, a kisser. He loves to have his face touched and kissed. He loves the physical presence of another person, especially his dad or I. We would spend hours rubbing his face, kissing his eyelids, clapping hands with him. Whatever...the sensation of touch and the desire to be touched is strong with him (Sounds a bit Star Wars-y), but it is true. It's almost like a drug with him (ok..us too) and we have to cut ourselves off or get nothing done.

Touch is amazing...it is intimate and yet not...this boy has taught me more about the power of touch than any of our other children. I am almost sorry that they are older, although he has taught them many lessons too that, I am sure, will translate to their own children someday.

6) Special Needs Mothers know to savor the gift of your child saying, "I love you."
This simple act was something I took for granted before our boy. When he was a baby, my husband taught him to say, "mama." I have a recording of it on my computer that I listen to sometimes so I can hear his sweet voice. Sometimes he sings, it sounds a little like a whale song, but hearing the word, "mama" hasn't been for some time. He has never said, "I love you." I am not sure that I will ever hear those words, but hearing his sweet voice makes my heart sing and break at the same time. I never knew that there might be a time when I would yearn so badly for one word..."mama."

When your child is non-verbal, like my sweetest boy is, you learn to take every verbal victory and sometimes that comes with the aid of a computer...even hearing him say, "kiss" on his ipad makes my heart sing. I know that the likelihood of him ever learning to talk is slim, but, until I am no longer breathing, I will listen to the voice on my computer, and hope to hear his sweet voice talk to me.

Special Needs Mothers are a special breed. Some people say that we are "given" our children because we can "handle it," but in reality, you never really know how strong you are until you need to be. We didn't really have another choice!

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Comments

  1. Thanks for sharing this. Your strength and love really shine through!

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  2. thank you for a moving post.. those that have not been affected by a special child like yours, can not understand, until someone spells it out. Thats what its about isnt it, the human race taking a little time to understand each other, perhaps then everyone will be a little less lonely.

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  3. Thanks for a peak into your world. I agree that I really don't understand what it must be like to be a special needs mom. Although I'd like you to visit my blog http://joycelansky.blogspot.com, there's another blog that you probably need to visit even more so. Amy McMunn Schindler is a part of our blogging group, and she blogs about her life with two special needs kids. Unfortunately, I'm having a tough time finding her blog address, but the next time she posts in GBE2, please check out her blog.

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  4. such a moving piece...I welled up reading about your love for your son. I had a handicapped brother who died from a fall when he was 23. I did not know my mom's struggle until I had children of my own and realized the depth of love a mom has for her children. My parents were completely sacrificial in their care of my brother. God bless you.

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