Guilt, Grief and
Thinking back to when I was pregnant with each of my babies, I remember the prayers for each of them before they were born. Prayers for health. Prayers for purpose. Prayers for strong bodies and minds. Like all pregnant moms I prayed for ideal children. Children who were at the top of the bell curve. Children I could be proud of. Of course, I also asked God for red hair and freckles!
Somewhere in each of my pregnancies I prayed another prayer. I asked God to create my children in just such a way that they could please him. He could have their personalities, their interests and talents. And, in an ideal way, I meant every word of those prayers. At what point did God “overlook” my idealism and create within my children “something just a little bit different” than I asked for.
I’ve learned a lot about prayers and praying over the past 14 years of raising my kids. Prayers are more of a chance to get to know God than they are meant to be “shopping sessions.” “Registering” for children didn’t work out the same as registering for first time baby gifts! When we registered at Target, we got exactly what we asked for. God, on the other hand, had so much more in mind for my kids than I ever dreamed. In hindsight, I should have spent less time praying for what I wanted and less time asking God to prepare me for what He wanted. BUT, that one moment of prayer, asking God to do Hid will in the lives of my kids, that one time when I really let go and asked God to take the reigns in their creation, He worked his masterpieces.
From the moment Caleb (now almost 14) decided to enter the world, I realized that my ideas for him as a child and for me as a mom were going to collide! Caleb decided to join us 6 weeks ahead of schedule. To this day he does not like confined spaces, so I am convinced that it was he who broke my water in an escape attempt! He was an amazingly large preemie, weighing in at 5 lb 13 oz., but he was still smaller than the cat when we brought him home from the hospital!
As you can see from the picture, one of his favorite pastimes those first few weeks was sleeping. The doctor told us that until he caught up to his due date that he would sleep even more than usual for a newborn. He was just perfect those first few weeks. All he did was eat, sleep and poop! He was so little that my body slimmed right back up, he rarely cried and so all was well with the world! He even got to go to his own baby showers that were supposed to be AFTER he was born.
Then he turned 3 weeks old. It was like a switch turned on in his head and he WOKE UP! He started screaming. The screaming started about 4 each afternoon and didn’t ever stop until about eleven each night. After the first day, I thought, “Woah! What did I eat that is making him so upset!” After the second, third and fourth days, I don’t remember exactly what I thought, but I do remember getting out the “What to Expect The First Year” book and looking up Colic. It had to be just colic. After a month of continuous screaming, a trip to the doctor, and some well intentioned advice later, he was still screaming. He screamed constantly in the evenings and was only just a wee bit happier during the day.
The “What to expect” book promised that most cases of colic settle down after 6 weeks. We were at 5 weeks at the time and I remember thinking, “Thank Goodness! Only about a week to go!” Then the thought hit me, “Wait! Will he be 6 weeks not or at 12 weeks when he would have been 6 weeks if he was born on time!” When the 6th week came and went, I knew we were in trouble! When the 12th week came and went, he was still terribly cranky, I went back to work and he still woke every 2 hours to eat at night! Needless to say, the Grief had kicked in in high gear LONG before then! The only ones who benefited from the situation were my 6th graders. I was in no shape to teach school but had to go each day quite sleep deprived. I gave them very little homework and what homework I did give, we graded in class because I had no energy left in the evenings to grade it.
Speaking of those evenings, the only thing I could do was be the human pacifier. The only time Caleb was not screaming ws when he was eating. We did supplement his nursing with bottles while I was working but enough was never enough. If I wanted to hold him when he was not screaming I had to be feeding him. No other form of soothing worked, and believe me, WE TRIED EVERYTHING short of giving him whiskey! (Our neighbor lady told us that ‘back in the day’ when her kids – now parents and grandparents themselves – were cranky she would add whiskey to their bottles. In hindsight, we should have tried it! But he was our first and you know how it is, you have to do everything by the book! The ONLY bright side of being a mom then was weighing 50 pounds less than I do now. I could eat as much as I wanted and he just drank it away!
OK, there might have been a few other bright sides, but in my extreme sleep deprivation, I have a hard time remembering them. I do remember telling myself that it is a good thing God gives us such cute babies. It helps us want to keep them!
Besides grief, I also had to deal with guilt. What were we doing or not doing as parents to have such a cranky kid. My other friends who were having babies looked at me like I was making up stories about Caleb when we talked about our babies. I grieved every time I heard them tell about the next milestone there babies were reaching when mine missed nearly all of them. I also had guilt over neglecting my husband. Raising special needs kids is exceptionally hard on a marriage. I was so exhausted physically and emotionally I had no reserves left for Cory. And, he, being a first time dad, did not have the intuitiveness at that point to recognize my isolation. If it weren’t for the Grace of God and a divinely timed little weekend vacation away from Caleb (when he was about a year old) our marriage could easily have spiraled out of control.
Turning the calendar forward 14 years, the grief is not quite as painful, the guilt is not as prevalent and our dreams for Caleb have broken free from anything we ever imagined. At times I see my friends sons who were born near the same time as Caleb developing into the young men I thought Caleb would be like and yes, I still grieve some. These boys have good grades, are good at sports, have lots of friends and can handle age appropriate social situations. They can even sit through a church service. It would be lying to say I never grieve anymore.
As far as guilt is concerned, I gave that up about 4 years ago! Seriously there was actually a day, a specific hour when God set me free from believing we were doing something wrong as parents. So many well intentioned friends and family (who obviously never raised a child on the autism spectrum) had offered us advice that was “guaranteed” to make Caleb do or not do such and such, that it was easy to believe that the problem was us. Besides, all of the people offering the advice had children who did or did not do what we could only dream about for Caleb. After first being told by a pediatrician that “We needed to get counseling to learn how to be better parents” because “There is nothing wrong or different about Caleb” we were devastated! We began to pray that God would lead us to just the right doctor! Basically, we begged God for answers! Caleb was 8 years old at the time and still having temper tantrums, meltdowns among other peculiar behaviors that just never went away.
That day, when we gave up our guilt, was a Tuesday in August of 2008. A dear friend from church recommended a neuropsychologist that she had heard of but didn’t know. The first time we met him he asked us if we could stay longer than our scheduled hour session. He told us “I’m just seeing so many patterns here. Could I hang out longer with Caleb!” He said it so calmly, like nothing was out of the ordinary. Pattens! You mean there might be a name for these patterns? You mean there might be a medication or therapy to make them go away! You mean this isn’t our fault! My head spun! 4 years and lots of counseling sessions later, we do have a name for those patterns. We do know that he was born that way and it’s not our fault. We have freedom from the guilt!
Then again, we had a new guilt for a while also! We had been punishing Caleb for years for things he honestly couldn’t control! What good parent doesn’t punish their kid for having temper tantrums, not eating his dinner and not making it to the bathroom when in elementary school. When we learned it wasn’t our fault that he did these things we did have to re-learn to parent him, but not because we were inept parents in the first place but because his way of processing required “extreme parenting!” It blessed me beyond words the day the doctor told us that not only were we not bad parents but we were exceptional parents for bringing Caleb as far as we had!
So how have our dreams for Caleb changed? In a way they have changed hugely and in a way they have not changed at all. For all of his behavioral and social shortcomings, Caleb is a remarkable young man. He is sensitive to God and his faith in ways way beyond his years. He has science instincts that are amazing! He has instincts with animals that are profound! He has an amazing heart for service! He loves serving others. He is presently at a “Rent A Kid” day to raise money for a mission trip he is going on this summer. He has to stain fence posts out in the hot sun for many hours today and he is genuinely happy to be there! His heart is so tender and caring that I just know God has big plans for that heart. He LOVES meteorology that I know God can use that love as well.
Other grief and Dreams~
God has surprisingly (for me, not Him) changed my whole attitude about dreams for me kids. He has had something unique to teach me through each one of what the world would call shortcomings in my kids. Does Dyslexia change the dreams I have for my middle kiddo? No. Does ADD and ADHD change God’s plans for any of my kiddos? No. Does the fact that we left public education change any of my dreams? No.
When the kids were eating breakfast about a week ago, Carolyn asked the boys what their favorite subjects are not that they are done with their first year of homeschooling. Josh (my dyslexic reader) answered "READING!" He is so proud of how many bookds he finished this past year. The ones he is holding are not even half of them! THAT is a dream come true!
The kids are all just so proud of their learning and accomplishments in our homeschool that are reflective of who they are not reflective of scores on a standardized test.
What God has allowed me to see is that Hid dreams are so much bigger than mine. His dreams are so much more eternal than mine. His dreams will be carried out no matter what labels have been imposed upon our family. His dreams are really the only ones that matter. His dreams are the ones I will cling to. His dreams will set us free.