Joshua's Story    

JOSHUA BRYAN CROSS

November 12, 1992 - February 20, 1995

What a wonderful day November 12, 1992 was! Our first child, Joshua, was born at home after a long labor. The midwife gave him an APGAR of 10 and weighed him in at 8lbs 8oz. I was beaming (tired, but beaming)! Life had drastically changed but I dove into motherhood with all of my energy. Joshua's first few months were tiring but relatively normal. He didn't sleep as much as I would have liked but he was a happy baby and very strong. I was so proud of him and thought he was the most beautiful thing I had ever seen! Somewhere around the time when he was between 6 and 7 months old, he began to change. He grew restless and irritable. He began sleeping fewer and fewer hours at night and naps. He began vomiting, sometimes violently, though he continued to nurse well. I noticed his body was feeling more rigid and he began holding his hands in tight fists, reluctant to even open them when I bathed him. His thumb was always tucked into his little fist or between his first two fingers. What was happening to my baby?!!!

Other moms would offer me possible answers - "maybe he is teething", "he is probably a 'high-needs' child (how true that would become later!), "food allergies", and on and on went the possibilities. By the time we took him in for a check up, he was very rigid and crying most of the day. I knew something was terribly wrong. In about a month, Joshua had become a different child. The doctor had her theories on what might be going on - CP, infant seizure syndrome, and others. The one thing she did right was to send us to a very experienced neurologist. We brought him a videotape of Joshua before the problems started. After viewing the tape and examining Joshua, I think he knew what he was seeing. Off we went with Joshua to have an MRI done and blood work was taken to rule out various diseases.

I will never forget the day we went back to see the neurologist after all the results were in. "Your son has Krabbe's disease. He will most likely not live past 1 year of age. There is nothing we can do except make him comfortable." We sat motionless, unable to speak. The doctor left us and told us he would return so that we could ask him any questions. I think this day was the hardest one of my life. How to describe my feelings? Shock, disbelief, helplessness, anger, utter despair. My precious little boy was going to die?!! I wanted to run from the room - I certainly didn't want to face the neurologist. The only question I can remember asking was "how will he die" - we wanted to know to somehow "prepare" ourselves (how on earth could I ever be prepared?!). The neurologist bluntly told us that Joshua would eventually loose his ability to swallow and would probably choke to death. Because of this statement I lived for 2 years listening for Joshua's breathing, jumping up, even in the middle of my sleep (which was never really deep again) to help him, using an aspirator to suction out the extra mucous that he could not swallow. Even months after his death, I found myself listening for his breathing and sometimes thinking that I could actually hear it!

For a while I existed in a state of denial and prayed fervently that God would miraculously heal him. Joshua continued to decline. Eventually he couldn't nurse and then lost his ability to suck from a bottle. He began losing weight as I spent hours everyday trying to feed him and give him enough liquids. He also became very sensitive to noise and would startle (as a newborn does the startle reflex) at the slightest sounds. I went about the day conscious of every noise I made - from the closing of the microwave door to the ringing of the phone (which we had turned down to the lowest possible ring!). Because he was so sensitive to sound, we stopped taking him out because it only upset him more. He also began having periods where he would startle and yell out every 2 minutes or so. He would do this sometimes for 3 days in a row, night and day. By the end he would be so tired (as was I), that he would sleep soundly for a night (and I would slip into a state probably close to unconsciousness!). When he turned about a year old, he actually began to sleep better - sometimes through the night! I found out about this time that I was pregnant again. I would not even allow myself to entertain thoughts about this new baby being affected with Krabbe's as well. It was just more than a person could bear.

Joshua's second year of life brought him several stays in the hospital, all for severe pneumonia. After his first stay, we made connections with a hospice nurse who taught us how to place an NG tube in Joshua so that we could feed him properly. Pediasure became his breakfast, lunch, and dinner. I will never, ever forget the smell of it! He began to put on weight and seemed to be more comfortable. He grew more and more calm and was able to sleep for longer periods of time. On the down side, we knew Joshua had now lost his sight. After Olivia was born (who, thank God, did not have Krabbe's), we moved to St. Louis as my husband went to graduate school. We tried having night nurses come into our home for Joshua but we simply could not trust anyone. Around this time Joshua's breathing changed. He would inhale with several short breaths and then exhale with a long drawn out breath. It seemed like forever before he would draw another breath. His chest began to protrude quite noticeably and the doctor said that it was because of his labored breathing. When he was about 2, he was in the hospital for another bout of pneumonia. Here we experienced what I believe to be below quality care because Joshua had a "terminal illness". I was so angry and was determined to try and treat his next pneumonia at home if at all possible.

In Feb. of 1995, Joshua began breathing very quickly one morning. He seemed to be almost panting. We brought him into the pediatricians office and were told once again that he had pneumonia. We asked the doctor if we could keep him home  and treat him with antibiotics. I think the doctor knew it was close to the end of Joshua's life and did everything to help us keep him home. An oxygen tank arrived that day and other things necessary to make him comfortable. In my heart I knew he was dying. That weekend my husband went out of town for a speaking engagement that he could not cancel. On Friday night Joshua was extremely restless and vomiting. I ended up bringing him in bed with me and lay awake most of the night holding him and crying. I felt as if I were saying goodbye to him. It had been since before Olivia was born that I had stayed up and cared for him alone during the night. I remember feeling a sense of importance that I enjoy this night with him - holding him, rocking him, feeling his soft, sweet skin against my face. I wrote a poem about my love for him and about being ready to let him go home to heaven where he would suffer no more. I can even now, over 5 years later, still feel how I felt that night. On Saturday morning I received a call that my grandmother had just passed away. My husband arrived home that evening and Joshua had another difficult night. On Sunday, he seemed to settle down. His breathing slowed and he slept peacefully. The alarm went off at 6:30am Monday morning. My husband checked Joshua and he was sleeping. He set the alarm again for 7:00 and when he woke up, Joshua had given up his long struggle and was truly at peace in the arms of Jesus. How precious was the time we had with him before we took him to the hospital - holding him, bathing him, and saying goodbye - how thankful I was that he died at home sleeping next to his Daddy.

I think we will continue to learn from Joshua's life for the rest of our lives. He taught us that life is precious and not to be taken for granted. He has made us  different people, especially different parents than what we would have been if it had not been for his life. But you know, I would unlearn everything in a second if I could have him back. The story of our battle with Krabbe's disease continues in the story of Joshua's sister, our third child, Laura Margaret Cross. She is also here among the Krabbe's Kids.

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I am standing upon the seashore.

A ship at my side spreads her white sails in the morning breeze and starts for the blue ocean.

She is an object of beauty and strength, and I stand and watch her until at length she is only a ribbon of white cloud just where the sea and the sky come to mingle with each other.

Then someone at my side says, "There, she's gone."

Gone where?

Gone from my sight, that is all. She is just as large in mast and hull and spar as she was when she left my side, and just as able to bear her load of freight to the place of destination.

Her diminished size is in me, not in her, and just at the moment when someone at my side says, "There, she's gone," there are other voices ready to take up the glad shout, "There she comes!"

So may it be, perchance, when down the tide our dear ones vanish..... We call it death - to them 'tis life beyond.

from Let Not Your Heart be Troubled compiled by James Dalton Morrison, 1938.

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The following is a letter that was anonymously given to us after Joshua's death. It touched me greatly and I pray it will always be true in my life. I call it The Gift.

"I know that in the short time that Joshua was entrusted to you, that God displayed great wonders in your son. You saw a world of courage in Joshua. For all his pain and suffering, he was the bravest of little boys. And I know that you saw a lot of love in his eyes. He loved you as much as any child has ever loved his parents. He knew well your tender care and affection. And in his own way, he returned that love at every opportunity. And you would have done anything in this world to see that courage- that love- grow and develop in Joshua as he became a man and matured to be all that you always knew he would be.

But God had other plans for Joshua. He took him. It was not because you were bad parents that God took your son. In fact, He first gave Joshua to you precisely  because you were the very best of parents that Joshua could have had. No one could have loved him more. But God had other plans for Joshua. And yet God's plans for Joshua are everything your own best hopes and desires for your son would entail. And much more. Now, with Christ, Joshua is truly a man after God's own heart. He is at last whole and complete. He is perfect in Christ. He has no lack, no pain, no tears. And so your time of ministry to Joshua has come to its conclusion. It was a God-given ministry, but He has brought it to a close. Now Joshua's ministry to you begins. Really, it began two years ago. When God brought Joshua into your lives, He gave you a child with a rare and special ministry. Surely you have already realized a little of that ministry in these two short years, as you shared Joshua's love. But there is so much more your son has to teach you.

The Lord, through your son - through Joshua's ministry - has made you among the richest of all people. Our Lord, through Joshua, has given you a gift which few people are ever privileged to share. He has given you the ability to see through our Savior's eyes.  You will never be able to see the weak and helpless, but through the eyes of Christ, full of compassion and tenderness. You will never be able to look upon the mal-formed or retarded, the invisible of society, with anything less than our Savior's own caring love.

The tender life of Joshua has lifted you out of all indifference.  Because of Joshua's ministry, all the superficial things of life are wiped away. Only the important things remain. God has given you a rare gift in your son- He has given you the gift of true compassion.

He has given you the ministry of our Savior's own love.

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You can e-mail Joshua's parents at crossbr@SLU.EDU

Take a look at 

Joshua's Photo Album.

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