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Strength through weakness.

Strength through Weakness

How does a mother cope with the words, "We don't know what's wrong with your son"? What are the feelings a mother has when her first-born child does not meet the world's standards of "normal development?" There are many questions, but are there any answers? if so, what are they? Where are they?

Joshua Paul. We wanted a strong name for our first-born son. It means "God is my salvation" and "small but mighty in God." Little did we know at the time how much we would learn about strength--strength in the Lord. We did not know at first that our son may have such a rare disorder that he may be the only child in the United States with it. We still do not know the exact cause, diagnosis, treatment or prognosis for Joshua's weakened body. But we do know that God is using Joshua's weakness to strengthen our faith in our Creator and to teach us mighty things about trusting Him.

PREPARATION

I have always had a love for children with special needs, probably in part, because I grew up with Bobby, a cousin with Down syndrome. Even during my pregnancy with Joshua, I sensed that I might be faced with raising a child with a disability, and I tried to "prepare" myself. However, I think every mother has a similar feeling at one time or another during pregnancy, and it's difficult to distinguish this normal feeling of apprehension from a deeper sense of intuition.

On December 2, 1986, when our son was born nearly a month early, my husband, Ken, and I were quite relieved to hear that he was a healthy 6-pound, 7-ounce baby boy. The fears I has during pregnancy immediately melted away. All the painful memories I recalled from being a pediatric nurse caring for children with rare diseases quickly gave way to thanksgiving. As any proud parent would boast, Joshua was a beautiful baby, with big blue eyes, biscuit cheeks and silky-soft skin. He seemed very alert, easy going, content and demanded little out of the world he had just entered.

One characteristic Joshua displayed, which at first we found so cute, was the way he would often find comfort by extending his head all the way back to look at the ceiling. After two months of age this head position was not so amusing anymore; we were concerned that he was still not holding up his head. In fact, he loved to arch his back and would even fall asleep in this acrobatic position. "Oh don't be so overly concerned," the pediatrician said when we brought this to her attention. So naturally, we tried not to worry, and found comfort in knowing that Joshua was so happy, content and alert.

CONCERNS?

Four months of age brought no improvement in Joshua's head control or muscle tone. We began to notice how little he used his arms and legs in a purposeful manner, even though he was so wiggly. This lack of motor development was becoming more obvious with each passing day. A new pediatrician was our next attempt to find some answers. "Let's wait another month, do some exercises and then we will decide what to do" was his response.

Between Joshua's fourth and fifth month, the developmental lag became even more evident. His head still bobbed and fell forward and backward; he stopped gaining weight; he was nowhere near sitting up; and now I was noticing an unusual aroma to his saliva -- a sweet, musty odor. My close friend's baby, just two weeks younger, was already sitting up and into everything! But I had learned, even before I entered motherhood, the dangers of comparing children. I tried to resist the temptation to compare. I knew that each child develops at his own pace, but deep inside, I was concerned. Nevertheless, I praised God for Joshua's uniqueness (and there definitely was that!). Soon our initial concern and fears would be confirmed, and I could ignore Joshua's condition no longer.

May 16, 1987, the day we first took Joshua to a neurologist, will always stand out in my mind. After thoroughly examining Joshua, he asked us "Well, what would you like for me to tell you?"

What a loaded question! This, after we had just presented him with our five month old who could barely hold up his head! Trying to remain strong, I said "Well, what would you like to tell us...Are our concerns legitimate?" After a very long pause, he replied, "Yes ... I would be very concerned." The lump in my throat and the pang in the pit of my stomach are easily remembered. Was this really happening to us? Could this be some mistake? Was I dreaming? Yet, even with all these questions going through my mind, I remembered a blanket of peace surrounding me at that moment, as if God Himself was putting His arms around me to let me know that He would be my strength.

So our concerns were confirmed and worse; the neurologist pointed out other abnormal findings. Within days, Joshua was admitted to the hospital for testing. As a pediatric nurse, I knew this could be just the beginning of a very long waiting game. Blood tests, urine tests, brain scans, nerve studies, muscle biopsies and many other tests all came back normal. I remember thinking, "How could this be when he has such low muscle tone?" But at the same time I was relieved that this ruled out many serious and fatal disorders.

UNANSWERED QUESTIONS

The questions were and even now are still there. Why wasn't he sitting up, or for that matter, holding his head up? What in the world was wrong with our son? Somehow, though, Joshua's smile and joyful disposition could brighten even the darkest day. We also saw the love and care of our family and friends as they reached out in so many ways. Whether it was through sending over a meal, mowing our lawn, bringing in groceries, babysitting Joshua, cleaning the house while we spent endless hours at the doctor's, helping us financially or praying for us, we knew of their concern.

During all this testing, and probably against the doctor's wishes, in September 1987 baby No. 2 was conceived. We joyfully thanked God for this and trusted this new life to the one who created her. Nine months later, on June 10, 1988, Amy Elizabeth was born -- a healthy 7-pound, 2-ounce strong and feisty baby girl. Although testing was done, no signs of low muscle tone or other problems appeared. We feel that she will have a special calling toward compassion as she grows up with her brother.

Joshua's first birthday came and went with still no signs of improvement or even a diagnosis. His first birthday cake read "God is my strength," because we truly believe this. We claim 1 Samuel 16:7 "Do not look at his appearance for God sees not as man sees, for man looks at the outward appearance, but the Lord looks at the heart." His precious character was developing in spite of his physical delays, and he was touching the lives of those who met him.

SOME ANSWERS

In March, 1988, we did get some answers, but with them came more questions. The results of a skin biopsy done in September, 1987, along with a sophisticated protein test done in December, helped point to a partial diagnosis. They told us that Joshua has a very rare metabolic disorder, so rare, he may be the only little boy in the world known to have this. He may also be missing an enzyme, and thus, his body does not utilize certain essential fats. What this enzyme specifically does and how it is interwoven into the metabolic pathway is still yet to be fully discovered. His body cannot go without food for more than four to six hours or he becomes very lethargic and has a fruity aroma to his breath, characteristic of a condition the doctors call ketoacidosis. We now feed him throughout the night with a special formula not only to prevent his body from going into ketoacidosis, but also because he has a poor appetite and difficulty eating.

As a nurse, I was trained to be able to put in feeding tubes quite well and quite frequently, but as a mother, different emotions are tugged. Although Joshua is becoming accustomed to this, and even giggles when we say "it's tube-y time" (until of course we have to actually insert the tube), it still pulls at my heart when I tell him "mommy has to put in your tube because she loves you." I do it because I know he needs it; his life could be in danger if I did not. But even though we are seeing some progress, I still find it painful and emotionally demanding.

Medically, the picture is very complex. The specialists do not know the cause or the significance of this missing enzyme, or even why he has such low muscle tone. Emotionally, this is very draining. I find myself playing the game of faith versus hope versus make believe. At times I wonder if I'm really trusting God for this, whether I'm living in a world of make-believe where Joshua is really OK, or whether I'm just hoping that Joshua will walk someday. I think at times all three come into play and I guess that's all part of faith -- the substance of things hoped for, the evidence of things unseen.

How do I balance the hurt of knowing my child will lead a life different from other children with the joy of knowing how special he is? Everyday we see that he is understanding more of what we say to him, which makes me wonder about the future when he realizes that he may never run or play ball with his father. Will we have to tell him? If so, how will we tell him? I find I have to resist letting these concerns overwhelm me -- concerns with answers only the future will reveal.

Vulnerable times come when you least expect them. I remember bursting into tears at a toy party when the demonstrator talked about how wonderful a particular toy was and how it would do wonders to improve your child's motor skills. I had no clue that the tears were coming and yet I've been to toy parties since and thoroughly enjoyed them.

I also recall the day a few months ago when I received a picture of the little boy who had been the normal developing baby against which Joshua's developmental delay became obvious at four months of age. The picture was absolutely precious, and yet it was a painful reminder of the time when we knew there was a difference between Joshua and the little boy. How he had changed! I wondered what Joshua would look like if he had been developing normally. I know these tearful times are normal. Fortunately they are few and far between. I can honestly say that the joy and privilege of raising Joshua far exceeds the tearful times.

Even when my heart aches as I watch Joshua play on the floor in much the same way he has for over 18 months, I also know that for him, he knows nothing different. He could care less that he can't hold his head up. He keeps on smiling, giggling and giving us rewards beyond measure. Our challenge, though, is ahead of us. We have to work with him daily -- doing special exercises, play therapy and various other treatments -- so that some day he may be able to sit and then stand and then possibly walk. We hope the day comes when he is no longer content to be on his back.

Although we have mini-goals for the day-in and day-out routine, we also have high hopes and high expectations for Joshua. I suppose every parent at one time or another sets out to rear "super baby," attempting to have a child who is better than the one next door; that's natural even if it's unfair to the baby. Some parents succeed in resisting this temptation, others fail, and it's the child who pays the price. We feel this may even be a gift Joshua has already given to his sister, Amy. Joshua has given us the capacity to accept him, his little sister, and any others that follow, just as they come to us, not taking for granted the traits God has given them.

We still have many questions and the hope that some day they may be answered. It's also true we may never know the diagnosis. But, if the medical field can give us no answers, treatments or promises, I'm secure in knowing that my hope and trust in God will remain. He is the true source of strength and security. He not only sustains me, but also wipes my tears and gives me a beautiful joy in knowing that Joshua is a very precious child in His sight.

PHOTO : Friends join the Bielots for a Saturday of fun: Jancie and Derek in the yard with Kelly Dwan, six, and Lorianne Fryar and her son, Dennis, three and a half.

Derek and Dennis are classmates at the Kennedy Day School in Boston, Mass., where they are enrolled in a preschool program.

PHOTO : Joshua and his family: left, with mom, Laura, top right, with sister Amy, 10 months; and and bottom right, with Dad, Ken.

PHOTO : Grandma helps 16-month-old Joshua try to sit up in his rocking chair
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Title Annotation:a couple's story about their handicapped child
Author:Miller, Laura J.
Publication:The Exceptional Parent
Date:May 1, 1989
Words:2267
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