God's Plan: Bigger and Better than Mine

on Tuesday, November 24, 2009 at 4:06pm

We were delighted to bring home our second child, Liam. Other than having a bit of difficulty nursing (not unusual in new babies), he was a healthy 8-pound 9-ounce boy. We thought he was perfect: 10 fingers, 10 toes, and startling blue eyes just like his big sister, Sophia. After a few days, he became an expert nurser and we got on with the business of being a family of four.

As the months went by, I began to notice that Liam was not developing like his sister had - or like any of the other babies that I knew. My very first realization of this came when I took him for his six-week pictures – a stress-filled experience that took two tries and yielded only one or two halfway decent photos. I remember driving home and wondering why, when Sophia was that age, we had been able to get her to concentrate on me and end up with so many great photos, whereas with Liam, not only was he fussy, but we could not even get him to look at me or a toy long enough to take a good photo. I had a sick feeling in my stomach, but I just pushed it down and told myself the reason for Liam’s difficulty that day was a combo of reflux (which he had been diagnosed with) and that socially boys develop differently than girls.

The next thing that we noticed, around the same time, was a bizarre arching to the left side. Liam’s whole body would be shaped like a rainbow. All of the muscles on his left side would be tight while the right-side muscles would be loose. I told the doctor. His response was that babies do lots of strange things. He was unconcerned. I videotaped it. He did an x-ray and said Liam was fine. . . . And so began 11 months of visiting every specialist I could think of. Our pediatrician thought I was overreacting, but I was calling every medical professional, biologist, etc. that I could find. Anyone was fair game. I had to find out what was going on with my son. We spent hours in doctors’ offices (in addition to the hours we were spending in therapies) and underwent many tests requiring sedations, blood draws, you name it. We left no stone unturned.

Finally, on a Thursday afternoon when Sophia was napping and I was nursing a 14-month-old Liam (yes - it was an 11-month search!), the phone rang and we got an answer. It was SO MUCH WORSE than I had ever even imagined! What Liam had made him severely cognitively disabled, would give him great physical challenges, and would extremely decrease his life expectancy. If that weren’t enough, I carried the gene! Not only were our dreams for our beautiful Liam shattered, but what about the family that we had planned? What about more siblings for Sophia? Would she never have a "normal" brother or sister whom she could play with, fight with, and confide in? How would we take care of Liam? How would this affect Sophia? The questions were endless . . .

I was devastated! When I wasn't feeling devastated, I was exhausted from running to docs, and hospital stays, and therapies, and trying to give Sophia a normal life. When I wasn't feeling devastated or exhausted, I was ticked! I was mad at my husband and his family for being so positive and supportive about it. I was mad at my parents for being so upset about it. Then I was mad at all the people who have one healthy baby after another and at God for allowing them to, but not me. I might be able to do this with God's help, but I DIDN'T WANT to!!

And yet we have had so many successes and joys in our short journey with Liam. Don't get me wrong; I have not "come to terms” with Liam's disability . . . Some hours, yes. Some days, yes. But other days and hours and months I feel all of those negative things that I felt in those first days. Not so keenly, not as desperately, but I feel them still. But God has not JUST given me great earthly joys with my children to get me through, His Word tells me everything I need not only to get through this but to find joy. And so if you have the moments that I do when it comes to dealing with your child's special needs, God's Word has something to help you.

First of all, God never promises Christians an easy life. Whether you are at the beginning of this journey like I am or have been doing this for 10 or 20 years, I think we can agree that being the parent of a child with special needs gives our lives a different set of challenges. I Peter 4:12 says, "Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you." James 1:2-4 tells us, "Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." Being "mature and complete" does not mean that we have some special strength or wisdom of our own, but that we have complete dependence on our wise, powerful, and loving God. God does not promise that our life as a Christian will be easy, but He is with us for the journey. All wisdom comes from Him. If we rely on Him completely, we can find JOY and He will show us how to dream new dreams. He has a plan, not just for us but for our child. Our children are NOT mistakes; God has a plan for each of them!

In Phillipians 4:4, we are told to "rejoice in the Lord always." I don't know about you, but rejoicing was not always at the forefront of my mind during these past years with Liam. A pastor friend was talking about this verse, and he said that it is helpful to remember that the word "rejoice" is made up of two parts: "re" and "joy." The "re" part of rejoice can remind us to return to the source of our joy. Is the source of our joy a perfect family of healthy and typical children? No. It is our perfect God and Lord . . . the sacrifice that Jesus made on the cross of Calvary for us . . . the hope of heaven someday. That is why we "Rejoice in the Lord always." We will always be disappointed when we seek joy from other places. Our joy comes from the Lord.

If we keep our focus on the cross, God will carry us . . . just as Peter was able to walk on the water when he kept his eyes on Jesus. If we focus on the difficulties, the unfairness of it all, the hardships, we will sink as Peter did. We pray today that God will fit each of us with lenses of faith that keep our eyes on Him and will carry us through the difficult days, months, and years ahead.

Maybe all the parents of "typical" kids don't get it. They get upset about going to the doc for checkups and shots. They don't know what it is like to watch their child be hooked to tubes and monitors galore. They are upset if their child is left out of games at recess. They don't know what it is like to have their child always be different, not fit in, stand out, and be stared at. GOD DOES. He gave his Son to die . . . as a criminal . . . beaten . . . hated . . . humiliated. What pain God the Father must have felt. And all for you, me, and our dear, dear children. Thanks be to Him.

Jesus’ great sacrifice on the cross has made us clean. All of the doubts that we have, the negative feelings, anger, or envy - these are gone. When God looks at us now, he sees the robe of righteousness that Jesus gave us. He sees not our weakness, but Jesus’ perfection. Again, thanks be to God! May we keep our focus on Him in the days ahead.