Raising Andrew – Duane Kelley
I have a 5 year old boy named Andrew. He is going to be 6 in just a couple weeks. He’s a short, red-headed, loveable boy. If you visit us he will pull you into the middle of our living room and introduce you to me and my wife with such a flourish, you will feel like you were on The Tonight Show. He is charming, funny, playful and kind. He will dance for you, sing for you, and bring you a glass of water without being asked.
He is tremendous fun. I’m not saying this because he is my son. It’s all true. But even with all that joy. Even with all that love and charm and happiness, the truth is, when I look deep into my soul…when I look at the dark places that I don’t want you to see…the God’s honest truth is sometimes I wish he weren’t my kid. It pains me to admit that. It hurts to the core that sometimes he is too much work to care for. To put it simply, Andrew is a lot of work.
Obviously by now you have figured out that there must be something wrong with Andrew. Andrew has Trisomy 21 or Down syndrome as it is commonly known (technically, it is commonly known as Down’S syndrome, but that’s incorrect. The last name of the guy who discovered the extra 21st chromosome was “Down”, but I digress).
My wife and I found out Andrew was going to be born with DS about 3 weeks prior to his arrival. I’ll spare you the sordid details, but we were prepared. I had one sleepless night crying and wrestling with God in the Devos children’s hospital waiting room (the chair in Chris’s OB room was too uncomfortable so I walked around Butterworth Hospital until I found a couch). My wife had profound peace. She was prepared for this. Her mother’s instinct was spot on. After a day or two we both felt blessed. God chose us for this boy! What a privilege! And we really felt that way.
He was born about 3 weeks premature and after a surgery he was home with his 2 older brothers at 2 weeks 5 days. A few days later I was outside talking to my 75 year old neighbor and he was watching the older boys running and playing and he says to me “It’s amazing how you can get two good one’s like that, and then one bad one.” Surprisingly, I didn’t find myself with my boot in his rear-end. I was a bit stunned, but I actually don’t think he meant it to be a judgment of Andrew. I told him that “God chose Andrew for our family, and he’s a perfect fit. I wouldn’t change him if I could.” I don’t remember the rest of that visit. But I remember that exchange. I remember at that moment feeling like I was connected to God.
Well, those self righteous days of “God chose us…” are gone. Sure, I managed a group home in my early 20’s with Down syndrome clients. I was a Registered Nurse with plans to become a Nurse Practitioner, my wife a high school English teacher. WHO BETTER THAN US TO HAVE THIS BABY! God recognized our ability and blessed us (sarcasm at my expense, not God’s)! So now Andrew is almost 6 and if I could change Andrew, I would. I want to go through is body Fantastic Voyage style and destroy every extra chromosome. My reasons are twofold: for his sake, I would like him to be healed of this, as it would give him a better quality of life. Second, it would make our life easier. The first three years or so were hard from a medical standpoint. He wouldn’t nurse, so Chris pumped for a year!
An abdominal surgery, couple ear surgery’s, tonsils out, eye surgery, too many colds and fevers to count. Many miles to Grand Rapids and back. Friends faded out of our lives and we let them go. We were too busy for them and I don’t know there story. But, he was fairly immobile. He developed slowly. It took him a long time to crawl, then walk. It was like the baby stage for a long time. It was nice! He’s still in diapers. He’s still not talking, although he has some words and does use some sign language. But, thankfully right now, the medical issues seem to be by him.
It’s the behavior that has me ready to take him back to Devos and say “Excuse me, there’s been some mistake.” We are struggling and it feels like we are failing in trying to train his behavior, what foods he eats, when he goes to bed, when he can watch TV, how he treats his little brother, when he goes outside, when and how do we potty train him? He also likes to clear things off the tables and not in a helpful way. If he gets it in his mind that a table shouldn’t have anything on it, he pushes it off onto the floor. Everything is a battle. Daily.
He’s probably had 100 timeouts this year for running when we call him. He’s probably had that many swats to his diapered bottom too. And the next day it starts all over. He didn’t eat dinner again tonight. I’m sure it was because it looked weird to him. It was fried rice with kielbasa that my wife made. He likes kielbasa. It was good. That happens all the time. He sits down, looks at dinner, and we make him try a bite and then he pushes his plate away. If we make him stay at the table he cries and screams and makes life miserable for all. He might throw his food. He might make sand castles out of the salt and pepper. So he gets down and he just doesn’t eat anymore tonight unless he eats his dinner. The next day we start over.
And he’s not potty trained yet, so we got two in diapers (Eli is our 2 year old). It’s Groundhog Day at our house, but we don’t know when or if we will ever get it right. And we don’t start over with clean dishes or laundry. All the work around the house keeps piling up day after day. Couple that with trying to homeschool, and it feels like a tsunami hits our house every day, and me and my wife are drowning.
So what’s the point? Do I have a kid for sale or not? Well, no, I don’t. I get angry with him. I slam doors. I curse and swear at a wall. Sometimes I am filled with such rage because I am so sick and tired of dealing with Down syndrome and all that goes along with it that I don’t think I can make it one more minute. And then I realize. It’s not Andrew that I am mad it. It’s not God that I am mad at. It’s me. I’m mad at me. I thought I would be a great Dad to Andrew. I thought I was prepared to deal with this. Truth is, I’m not. I’m weak. I’m easily frustrated and I cannot handle the daily stress that piles up like dirty laundry until eventually it falls out of the basket and someone trips over it in a loud, clumsy fall.
See, I get mad at the other kids, but they learn (not the first time usually, but it’s not Groundhog Day either). One of the best explanations of DS came from Jonah when he was 7 or 8 and he explained DS to his cousin. He said “Andrew will be like you and me, it’s just gonna take him longer than most kids”. We probably told him that at some point, but it sounded good and pure hearing him say it. And, he’s right. It is taking longer.
I’m also pretty ticked at Down syndrome itself. And knowing that, helps me love Andrew more. Reminding myself that it’s not his fault gives me more understanding. I still feel that God chose us for Andrew and he is a blessing (because the many, many good moments we have are unbelievable). However, he didn’t put Andrew in our lives because of my career track or because we are great people. It’s simply because it was His will and I am ok with that. He tells me, “I know the plans I have for you. Plans to prosper you and not to harm you. Plans to give you a hope and a future.”
It’s a promise from Jeremiah that was shared with me when I announced to people that we were going to have a baby with Down syndrome and that he would need surgery when he was two or three days old. I forget about that verse every now and then. I need bad days like this to remind me. I wish I didn’t. I wish I was able to walk daily with God and have the right words to support and encourage my wife. I wish I had the energy to devote to Andrew the time that he requires. But I don’t always. It usually takes me a couple weeks to see that the waves have been coming over the side and the water is covering my ankles.
Today, it was up to my waist before I realized I needed to get on my knees and start bailing. I am thankful for the four blessings we have. We serve a loving and benevolent God. He has a plan for us. He has poured out His blessings on us like rain. So I am asking for prayer. I need it for me and for Chris and for Jonah and Ben and Andrew and Eli. Jonah and Ben are our buffers. They get stuck having to give us a break now and then. They get told to take the boys (Andrew and Eli) outside or downstairs to play so we can do some cleaning, reading , talking to each other without being interrupted, or just recovering quietly for a minute. They’re good boys, but they resent it sometimes.
So, we all need prayer because Eli is passing Andrew developmentally already and soon he will be helping out with him. We need prayer in the area of homeschooling. How do you homeschool when it is so hard to enjoy being around your kids? It has been a hard year and not much schooling is getting done for awhile now. The little boys take up so much time and energy. We need support too. We need someone to come alongside us and commiserate, give us some respite time, and just love us.
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Your letter had me in tears. You, Andrew and the rest of your family are prayed for.
I, like Ken, was in tears after reading your letter. God bless you and your family. May I only encourage you with this thought; your sons are a wonderful gift, this you know. But Andrew is a very special gift. Have you ever considered that your son Andrew will never offend the Lord Jesus. Though born into a world of sin, he will remain innocent. The Word of God says that the first shall be last and the last shall be first. As you said, Andrew’s quality of life may not be that of what most people enjoy, but he shall walk the streets of a heaven a king with the King of kings. God bless your family.
Thanks, Robbie. I have had thoughts like that, but never have put it so eloquently in my mind. It is encouraging.
I told Todd that I wrote this after a particularly rough day and did not mean to sound so needy at the end. While what I ask for is true, (prayers, understanding friends, support, rest) I am also looking for families who are homeschooling special needs kids.
Thanks for the prayers Dad’s.
We also have a special needs son. He is now 8. He has epilepsy and severe to moderate learning disabilities. Both of which have no apparent cause – despite endless trips to the hospital from the time he was one. He is potty trained however only really within the last year – and he still has plenty of accidents. He can not read or write his name. He does not seem to recognize colors very well. But he is extremely funny, energentic and will talk your ear off – even though some if it may be hard to understand. We also went through a time where a whole set of friends seem to drift away because of him. In short I felt like I was reading my story somewhat when I read your post – so I definitely understand how you felt at that time. The one thing that is personally hard for me is to hear my friends talk about there 8 year old play this sport or go over to their friends house for a sleep over, etc. These are things that are foreign to us.
He has been in public school since pre-school and is currently in the first grade (repeating). However we will be homeschooling from this fall. This will be the first for hoemschooling for us and a special needs kid at that. So if you want to talk I would also appreciate it.
Even though there are many tough days – I am thankful to God everyday for who he is and what he can do.
Duane, I just want you to know you are not alone. It looks like my wife and I have been travelling through that same long dark night of the soul for the past 6 1/2 years. Our Rachel was a surprise DS girl, born 3 weeks early and in for abdominal surgery at day 6 (Hirshsprungs). She remains in diapers and has older and younger siblings in the same boat.
Rachel is a delightful girl and she can melt a heart at 50 paces! But some days are a struggle as we work on speech and homeschooling. I have often prayed and told God I am at the end of my rope and I need him to pull me up. More often than not, he sends me more rope instead! But that is sufficient for the day. He never abandons me.
Hang tough!
Thanks for sharing your story, it rings true with me in a lot of areas of my own life.
As well it gave me insight into a parent’s reality who has a child with DS. God has given me the honour to serve adults with intellectual disabilities in my work. Every day they bring the joy you talked about and teach us so much about life everyday. I am glad you shared your journey.
Duane, you and your family are in my prayers. Again thanks.
That is real. Thank you for being real. My husband and I heard you speak this morning in NC, and I visited your site to get to know you and your family. Judging from this morning’s talk, you already know me. I was in the back, alternating between laughing tears to crying tears. You and your family doing what you do encourage my family in doing what we do, or should do. I thank God for your ministry to my family. I am praying for support to come along side you all. Be encouraged.
Thanks so much for your article. One of our children has sensory issues and, while certainly not as severe as other disabilities, it does take it’s toll on the family. He is a sweet, sweet little man but sometimes can be so hard to raise. After a particularly hard day, our older son said with great honesty, “I just wish he was normal.” Sometimes I do, too. Other times I’m thankful for the perspective so I can relate to other families like ours.
We heard of this site a long time ago for homeschooling special needs children. Don’t know if it will be helpful or not, but I wanted to send it along.
http://www.nathhan.com/
(the double-h is on purpose)
Blessings on your beautiful family.
Good evening Duane.
I too, have written a few times to Todd as well.
You are one of many who walk this very path, the father of a special needs child and there are many walking next to you, including myself.
I too, am the parent of two special needs, home schooled kids and share a lot of your frustration and observations.
My daughter was born a week late and the size of a premee! She spent the first 30-days of life in an isolet with very little contact from her mother or me. They told us it would compromise her welfare. Finally, they felt she was stable and grown enough, to go home. Before they let us go home, we met with a social worker, a genetics specialist and her intensive care doc. They told us take her home and “just love her” because she likely will not see her first birthday, due to a rare genetic condition(1 in 40,000 kids). Imagine our shock! So we did.
We have done everything we knew, talked to anyone who offered hope, resources and searched for many answers. We have worked hard to maximize her potential, but nothing like the effort she puts forth 3x a week in PT, OT & speech and everyday life! She has done this since 6-months of age. She is very smart, in spite of her developmental delays and lack of speech; most overlook her as a person. The only groups who interact with her are family, a select group of women & men at church and her therapists and friends there. It hurts to know she will likely never have a sleep over at home or a friend’s house. She is skipped from the guests’ lists of many b-day parties, because she does not fit in and perhaps that she may not find a man to marry, who will love her as much as we do!
She is now 14yo and all teen girl! She loves music, video games, movies, music concerts and go-cart racing.
A year after my daughter, our son was born and he was “normal”, or so we thought. Remember… I said I have two “special needs” kids. When he was 2 1/2yo, he was diagnosed with Type-1 diabetes. No family history any where? Many don’t see this as special needs condition, but if you under stand this disease, he can’t make insulin!
His pancreas failed him. No insulin and he will not only get sick, lapse unconscious, perhaps seizures and land in the hospital, if not treated rapidly even death! That sounds kind of “special needs” to me! So we juggle his daily food intake and programming his insulin pump to keep him healthy & happy. Being home schooled kids, my wife beares much of the load to care for them each day. She really does a great job with their care. He is now 13yo. He loves his dog, video games, drawing, swimming, playing golf and we enjoy Godzilla movies together!
Of course, his mother and I worry about the future and the eventual complications that are to come later in life, so we pray and ask for God’s health and healing for him. Again, it pains me to know he will likely never serve in the military if he chose to. He won’t be a pilot or perhaps a public servant like police or fireman, due to his diabetes complications.
Both children are home schooled due to their unique needs.
We approached public school for both in kindergarten years, but rapidly realized we could and HAD to offer them better. Mediocrity was not good enough for either.
As I tell my friends when they ask-“How is your family?” we have good and bad days. The bad days really can be very bad, but the good days are amazing, simply memorable!! We both struggled with the “why us?” questions. My wife especially has carried tremendous guilt about their problems having birthed each one and much anger towards God. My belief is, God gave these two children to us for a reason. As we learn in church, HE speaks to us and reveals his truth, but in HIS time! God knows we can offer them something other parents could not. Although we often question whether we are capable of meeting that expectation, somehow we move forward and do so. My children have influenced me to be a different kind of person. Our priorities changed rapidly. I use to say “I want it all!”. Meaning the American dream, when actually I have God’s dream for my wife and I!
Duane, I hope this may offer you some hope for your family. What I have learned so far, being a parent is great, but a special needs child will allow you to have a special bond with your “special little man” that no one else could possibly understand. One of my favorite memories I shared with my two “special” children, was the day they were baptized at church, accepting Jesus into their lives and shared that day when I recommitted my life to Jesus as well. Andrew is already a child of God, but help him to know who Jesus is. Lead your son to know the gift of salvation Jesus has for Andrew. Talk with him, as we did with my non-verbal daughter. My appology for being “wordy”, however you seem to needed to know others share your pain. I pray you find peace for you and your family. God bless you.