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Portrait of a Hero - Susie


My husband and I are parents to two severely handicapped children, diagnosed with a rare genetic Nero-Muscular disease. They’re mental development is between 12 - 18 months of age, both in wheelchairs. When our daughter was born, we were told that she would never live past the age of two. Our daughter passed away at the age of 20 years, in February 2008. Our son, who will turn 22 in August of this year, is so doing well at this time.

With special needs children being the center of our lives. I was asked the question; “What do I do?”.

Well, that is a broad question. After breaking it down, what I do is love them. They have been the center of our world and all things revolve around their needs, welfare, and their happiness. We have sacrificed to make their surroundings as loving and as safe as possible. Here is just  one example:
During the spring and winter months we have kept away from places that would cause a higher risk of illness to come into our home by exposing ourselves to others. So, theaters, holiday parties, church, and other social gatherings that occur during the cold and flu seasons we have eliminated from our lives during these months. By so doing, we have eliminated unnecessary emergency runs to the hospital and weeks of illness to contend with. We also post a sign on our front door that no one will enter our home if he or she or family members are or have been ill in the last 72 hours. By doing this one thing alone we have cut back on hospital visits and illness in our home. And, if special needs children are your life cutting the hospital visits and bedside vigils down is a welcome relief.

It isn’t an easy thing to do to isolate yourself at times. Some people may not understand the seriousness of illness to those who are highly susceptible. They may react with raised eyebrows and even think that you may be over reacting, being overly sensitive. But it really doesn’t matter what others think - learning that concept is very freeing. I can’t  please everyone, don’t want to please everyone, don’t feel the need to please everyone, it is a very freeing feeling. Those that respect your wishes even if they don’t comprehend your reality because it is not their experience, but still respect your position and except your wishes, they have proven to be true friends. Those that don’t well, they can think what they want and they can stay away whether it be friend or family. It is as simple as that. It might sound strict, but they are not the ones that will be in the hospital with your child or up nights at their bedside. 

From 1987 to present. It has been diapers, dressing and bathing them, sippy cups, Mr. Rogers, Sesame Street, special attention to food preparation, liquid medicines (they don’t swallow pills), specialist, hospitals, and some surgeries, etc.
    So, all the things you would do for a 12 - 18 month old, Except adult size. Plus add to the mix all needs that the physically and mentally handicapped  individual needs to thrive. Only experience in the special needs arena can one truly understanding an individuals constant need in day to day care. It truly is self-sacrifice of the care giver(s). When done out of pure love, it seems to not be so much of a sacrifice, but it just becomes life, and what you do. Like breathing. Someone tells you to stop breathing - impossible.

Has it been easy? Absolutely not.
Have there been moments where I felt like hitting my head against a brick wall? Many times. And, I did too. Until I realized it did no good. Eventually I stopped doing that and just move forward. Much easier, less painful. I found that only fulfilling the need to please and take care of my family and our circumstances was all that was required of me. This made it less likely for me to feel more overwhelmed then I was already feeling in dealing with the special needs in our home. That saying “No” to those things outside my home responsibilities helped me to better focused and cope more effectively in my home. I guess it is back to the concept that you can’t please everyone, and can’t be everything to everybody.
Have I had my 'Come to Jesus' moments? Absolutely, so many times I could not give you an accurate number.
Has the experience changed me for the better? I certainly hope so. I guess God will judge.
I certainly view life and things differently. Accumulating things, truly not important. Less is definitely more. Peace of mind, love and peace in our home, is priceless. Simple way of life, and living is so much more a blessing then chasing and accumulating things. It is not worth worrying about what others might be thinking about you, and realizing that they are busy with their own lives, and are not thinking about you at all or even in a negative way. We tend to put a lot on ourselves in our own minds. It is good when that kind of thinking is dropped altogether.
Has it humble me before my Maker? Many times.
This experience has blessed me with tenacity. From my perspective, I view tenacity as a form of a blessing - I will do what I must do for the health and welfare of my children. If others do not understand, then so be it. Move out of my way and let me get on with caring for my family and our circumstances.

In all the hard work, tears, fears, sleepless nights in hospitals and home, surgeries, physical therapy, special schools. Living in a world that is not handicapped friendly. Living around others who live in a “circle” shaped life while you and yours live in a “square” shape life, trying to balance as best you can. Caring for our daughter while life slowly left her tired body. It has all been a learning and ever changing personal experience. In Gods own time, we will go through this again with our son. It helps to know that we did it once, and with His love and understanding and His constant help, we will get through it again. Even though, our hearts will be broken again. The loss of children brings a constant longing for them. But, we will see them again. Again we will be together, never to be separated.

Even with all of this and more, there has been great joy in witnessing the tender mercy of our Heavenly Father towards our little family and our very special children and for us as their parents. We felt that putting our children first in all things was actually putting our God first in all things, we have been blessed by so doing. The blessing of  knowing that these special spirits entrusted to us are His in every way and we must do all we can as parents to ensure their happiness and welfare.

There has been no one else in my whole life that has taught me more clearly the Pure Love of Christ then our children. The love of Christ will always shine in their eyes, in everything about them, their laughter, their gentle, and trusting hearts. As their parents they have taught our hearts more of pure love and sacrifice then I could ever express in words. Even through the intensity of sorrow and moving through adversity has been difficult. The struggle felt at times like we were walking up hill through deep sand. That the next step would be the last. It always amazes me at the end of it, when the heart and mind is able to rest and reflect back on the passed struggle, there is the joy and gratitude in the reflecting. Seeing and knowing without a doubt Gods loving hand and tender mercies carrying you through over the years. That, it is in the struggle that the heart and soul grows the most, and joy is more clearly seen.

There is a poem called “Along The Road”, written by Robert Browning Hamilton. We have it hanging on our refrigerator. It speaks to our hearts the truth of our life experiences.

Along The Road

I walked a mile with Pleasure.
She chattered all the way,
But left me none the wiser
For what she had to say.

I walked a mile with Sorrow,
And ne’er a word said she;
But, oh, the things I learned from her
When Sorrow walked with me.

Being Christian and believing that their is so much more waiting for us after this life. Because of and through the sacrifice and tender mercies of our Savior, He has provided a place for all His children if we will except Him. My husband and I long and look forward joyfully to the time when we can see our children as they really are, and be together once again. At that time a new beginning and life will begin, where there is no sorrow, only joy.


Deb said...
What a precious soul you are. I can feel the love of the Lord pouring out thru your words. I feel God gives special needs children to special people who can fill those needs!!! Thank you for joining my Fantastic Friday "party"....and for posting about it on your site!! HOPE your weekend is blessed!

Alida said...
you amaze me!


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