Once again, it's taken me too long to post this. My original plan was to post a different blog topic, but I felt led to post this one instead. Blessings. :)
Lately I’ve been restless, hungry even, when it comes to seeking God and understanding His will for my life. At the same time, I’m also learning to be still, so that I don’t have to try and have everything figured out. As I spend each day with Stephen, taking care of him and his needs, I have come to a place where there is a lot of joy despite things often being hard and overwhelming. God has used things in his life to get me to this place. I can honestly say that joy is found in the midst of suffering. And here is how.
It’s taken a lot of wrestling with God to get to this point. Some Christians freak out at the thought of “wrestling” with God. They would say “But if you’re saved, you must not trust God because bad things don’t happen to people who love and trust Him.” I do not believe this is true, and I’m certain that those who say this have either 1) never been through something painful or tragic, 2) are living in their own happy bubble, oblivious to the rest of the world, and/or 3) avoid the subject of pain/suffering like the plague and are the first to change the channel when anything bad or sad comes on the news.
I don’t see anywhere in the Scriptures that teaches us to pretend that life is one big, happy, rose-colored walk in the park. In fact, if you read the Bible, you are sure to come across tragedy before you even get through the first book of Genesis. There are numerous accounts of Christians who have wrestled with God, and most of the time that comes from wanting to know “why.” Perhaps the hardest book to read in the Bible, if you live as though Christians/God-followers only experience bad things if they aren’t saved, is the book of Job.
Job was beyond faithful to God. He loved God and trusted Him completely. But Job hadn’t ever really suffered. Satan was convinced that if he did suffer, he would surely turn his back on God. But God knew Job’s heart and allowed things to happen in his life that were horrific, such as Job losing his entire family, his land and animals, etc.… Still, Job remained faithful. Then, Job’s 3 friends came along and tried to figure out why God would let such bad things happen to him. They wanted to say that Job had done something wrong or had not had enough faith, that he must have made a mistake somewhere and was being punished, or that God must not have really loved Job like Job thought.
Finally, God comes along to speak to Job (the longest speech in the Bible given by God), and Job is at the breaking point, ready to turn away from God. God first tells Job that He will deal with his friends later and to listen to Him instead. God does not really answer Job’s questions directly, but He does remind Job of His great works, His majesty, and His power/ strength. Job remembers God’s goodness and turns to Him again, God sees that Job loves Him and trusts Him, and God gives back to Job ten-fold what he lost. God shows Job that regardless of how things seem in the bleakest moments, a God who is wise enough to rule the universe is wise enough to watch over his son Job.
One of my favorite authors, Philip Yancy, wrote a book called “Where is God When It Hurts.” It is the best book I’ve ever read when it comes to this subject. I believe every Christian needs to read it. He says: “In Job, the portion of the Bible which most vividly poses the question ‘Who causes pain?’ God deliberately sidesteps the issue. He never explained the cause to Job. All the way through, the Bible steers from the issue of cause to the issue of response. Pain and suffering have happened – now what will you do? The great discussers of cause, Jobs three friends, are dismissed with a scowl. The Bible is so clear on this point that I must conclude the real issue before Christians is not ‘Is God responsible’ but ‘How should I react now that this terrible thing has happened?’"
Ever since Stephen was born, and things went downhill, I have questioned the cause of what went wrong. Over and over I would ask God the same things and never get an answer. I still do not have an answer. The weird thing is, the more I focused on the cause and demanded answers for what happened, the more bitter and angry I became. It was affecting everything I said and did. Yes, I loved my son more than life itself, but I was not content with God letting something be wrong. And this in turn was affecting how I viewed my son and my reason for living. A whole year went by before I realized that though I had not turned my back on God completely and still loved Him, I was not exactly happy with Him.
The amazing thing about God is that He is patient, He is willing to listen, and He will do whatever it takes to get us out of the pit of despair. He was also willing to let me wrestle with Him until I decided to stop wrestling and start listening to Him. I pretty much got an earful (albeit gentle), but this time I didn’t respond with more questions. My response was different. I was still grieving, and still am, but born out of that grief was a joy and thankfulness I had not had (I wrote more about that in another post, which you can read by clicking here).
The Bible says: “Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in Christ’s sufferings so that you may be overjoyed when his glory is revealed.” (1 Peter 4:12-13)
“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith – of greater worth than gold, which perishes even though refined by fire – may result in praise, glory and honor when Jesus Christ is revealed.” (1 Peter 1:6-7)
Philip Yancy writes “We are often willing to undergo productive suffering; athletes and pregnant women volunteer to suffer because of what it will produce. The Bible says that a proper Christian response to suffering gives this same hope to the person on the hospital bed. He can become a better person because of his pain.
The rest of the Bible sheds some light on the words ‘rejoice’ and ‘be glad.’ By those words, the apostles did not intend a grin-and-bear-it or act-tough-like-nothing-happened attitude. No trace of those attitudes can be found in Christ’s response to suffering, or in Paul’s. If those attitudes were the goal, self-sufficiency would be the quickest way to attain them, not trust in God.
Nor is there any masochistic hint of enjoying the pain. ‘Rejoicing in suffering’ does not mean Christians should act happy about tragedy and pain when they feel like crying. Such a view distorts honesty and true expression of feelings. Christianity is not phony. The Bibles spotlight is on the end result, the use God can make of suffering in our lives. Before He can produce that result, however, He first needs our commitment of trust in Him, and the process of giving Him that commitment can be described as rejoicing.”
In all of my wrestling, questioning, etc. with God, He finally led me to the realization that I was not trusting Him. It was impossible for me to feel any peace or joy whatsoever without that trust. We trust those we love, and if I loved Him, I had to trust Him. Hope and joy and laughter and the things I now am able to experience daily are born of trusting through suffering, or in my case, trusting while my precious son faces challenges that are beyond what I really understand and beyond the answer to 'why.'
I have found joy only by trusting God. The days in which I don’t trust in Him are the days in which I find myself trying to slide back in the pit. Trusting Him is the only way I can look at Stephen’s future with hope and not worry.
Trust God. No matter what you’re going through, no matter what people say, no matter how angry or bitter or sad you may be, God does have a plan. A good and secure plan. Trust Him.
Back in the olden days when I was in seminary (actually, that wasn’t so long ago, it just feels like it), one of my favorite professors shared a quote with the class that has stuck with me since then. I remember him talking about why he taught the subject he taught, and he said it was because “we teach the best what we need to learn the most.”
I think for a lot of us, that is true. I always said that to my youth group kids when I was trying to give a sermon, except I changed the word “teach” to the word “preach.” Some of the very things I wanted them to know were things I had struggled with or still struggled with (like dating the wrong guy – past, or trusting God – present).
This post is kind of about that. Once again, God has used Stephen to open my eyes a little bit. I don’t want to come off sounding high and mighty, and as my DH has always said, God will use anything to keep us humble when we start thinking too much of ourselves, or when we think about ourselves too much. I know in the past I have offended some people by attempting to say something God wanted me to say, and it came across like I know everything or thought I was better than them. Unfortunately, I don’t know everything, and I definitely don’t think I’m better than others.
I can confess that before I had Stephen, a baby with medical issues/special needs, I rarely, and I mean rarely, thought about parents who had a sick child or a child with special needs. Sure, I would see commercials about St. Jude’s with cancer patients, or hear of a mom and dad grieving over a stillborn baby. I’d see a child with Down syndrome in Target, and I’d think “oh, he/she is so cute.” But truthfully, it bothered me, and most of the time I’d catch myself saying an empty prayer and moving on. If I want to be brutally honest, I’ll just say I really didn’t care.
This pretty much changed when Stephen was in the hospital for 2 ½ weeks after he ended up dehydrated and refused to eat or drink. We were in the same hallway as children who had a myriad of issues; some were there for a simple surgery and would get to go home. Others were there with chronic illnesses. And still others were tiny babies clinging on to life.
I’ll never forget meeting the teenage mother of a baby who was premature and had a heart defect; this young girl had no idea if her child would make it from one day to the next. The fear and exhaustion on her face were more than I could take. It would be months before they could do a surgery on her child to correct the heart defect because she wasn’t big enough. She had never even held her baby girl.
After that, when we went to Baylor and stayed at the Ronald McDonald House in Dallas, I met a little boy named Jordan who had been battling cancer for years. I became quick friends with Jordan’s Mom, Vicki, who told me about Jordan and what their family had been through. It was like the ignorant, selfish blinders were gently removed from my face, and then I was hit on the head with a brick. My whole body was screaming at me to “WAKE UP…it’s not about you, it never has been!”
When we got home from Dallas, I was still having a really hard time accepting that my child wouldn’t eat and that we didn’t know what was wrong with him. But I also told God that I didn’t want to live with my eyes closed anymore to what other people, specifically sick or special needs kids and parents, were going through. I prayed for Him to give me opportunities to bless people, to reach out and show compassion.
It wasn’t long until I had that chance. Stephen needed another endoscopy to see why there was blood coming through his feeding tube, and during that time, I met a precious mother whose 17-year old son needed a feeding tube. The doctors didn’t know what was wrong with him, but he had stopped walking, stopped talking, and stopped eating. He had a type of degenerative disease that was unknown. He was next door to Stephen in recovery. Tears just poured down my face as I watched her looking at her son’s new feeding tube they had just put in. I introduced myself and asked her if I could give her a hug and pray for her son. I think she was kind of shocked, but she didn’t hesitate. She was alone, and I think she felt it. While Paul stayed with Stephen, she and I talked. I told her how to use the feeding tube, and I gave her my phone number in case she needed anything. At the same time, there was a young nurse who was sitting at the desk. I walked back by her, and she asked me where I went to church. I told her where we went, and she said that she wanted to be in a church where people really cared about other people.
Not long ago I heard a quote that I love and want to share. It goes like this: "Sympathy says 'I feel sorry for you, but I'm glad it's not me.' Compassion says "My heart hurts for you, and I want to help.'" Somehow, in crazy ways, God takes our brokenness and uses it for good. But He can’t do that unless we get our minds off of ourselves and reach out to others.
There’s a new song out by Anthem Lights that I love; Stephen and I love to listen to it and dance together. I want to share the lyrics because it completely sums up what I’m trying to say in this post, and what I’ve been feeling for quite some time.
“Outta My Mind” – Anthem Lights
Feelin’ like I got a front row seat to watch everybody be happy
Can’t even paint a smile on my face, it’s so hard to not complain
Gotta try not to say
“O God, what about me”
‘Cause I know that’s not the way that I’m supposed to be
Get me outta my mind and into Your heart
It’s not about me, it’s not about me
So I’m gonna start playin’ my part in Your design
Now is the time
Get me outta my mind
Outta my mind
There's a bigger picture on display and it's starting to come in focus
Causing me to see to see the ones in need outside my little world
Gotta try, just to say
“O God, what can I do”
Doesn't matter what it takes, I wanna lead them all to You
Get me outta my mind and into Your heart
It’s not about me, it’s not about me
So I’m gonna start playin’ my part in Your design
Now is the time
Get me outta my mind
Outta my mind
If anybody asks me what have I been up to
This is what I'm gonna say
I've been spending my time, outta my mind
And I'm really lovin’ livin’ this way
Get me outta my mind and into Your heart
It’s not about me, it’s not about me
So I’m gonna start playin’ my part in Your design
Now is the time
Get me outta my mind
Get me outta my mind
So I’m gonna start playin’ my part in Your design
Now is the time
Get me outta my mind
Outta my mind
(I apologize for taking so long to get this post up. I had written it awhile back but didn’t have a chance to proof-read and edit until now! We are always busy with something, and unless little man is napping or DH is home, I don’t always get the time). : )
God truly speaks to me through my son Stephen. Sometimes even after reading the Bible for over an hour, I feel like I don’t hear Him. Then I see Stephen smile, sleep peacefully, or do something new, and I feel the presence of God in the room. Sometimes when I’m tired or losing my patience, God uses Stephen to remind me of His love through a precious hug or kiss. I feel like things are going to be okay because my child is a beautiful representation of the Hope that Christ can give.
God also uses others to speak for Him when we are at a loss or when we feel like He is silent. During one difficult week, we struggled to make it to our church’s Bible study for couples. DH and I always try our best to get there even if things are crazy. There have been many times that DH has gone by himself because I had to stay home with a sick or hurting baby. That week, I believe Stephen was well, but DH didn’t get home from work until very late after a stressful day. We almost didn’t go, but we knew we needed to be there for support. We are beyond thankful for such a wonderful group of people that are willing to listen, pray with us, and offer loving support and comfort. Every person in our small group has more grace than anyone I’ve ever met.
That night we watched a video based off of Psalm 42:5, which says “Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.” During the discussion, I remember sharing with our group that at the worst time of Stephen being in the hospital, not eating, being sick, I felt utterly hopeless. I felt like God had abandoned me after years of wanting to serve Him. And I didn’t know what went wrong or why.
Everyone in the group offered encouragment towards me, but sometimes it takes a little boldness from a person to really hear God’s voice. One couple leads our group, and they are incredible. It was *Diane, the female leader, who spoke some words I needed to hear. She told me I had to remember that while I may be helpless, I am not hopeless. That I either had to acknowledge God’s goodness regardless of what I was going through, or I could pretend that He didn’t care. That if I trusted Him then I had all the Hope I needed. And that His Hope is enough.
Talk about a blow to the ego. Although she said every word soaked in love, she didn’t sugar coat it. It was exactly what I needed.
That night, months ago, I decided that I was going to let the Hope of God be enough. And on the days when I have felt exhausted, frustrated, angry, confused, scared, alone, etc… over my son’s medical problems and special needs, when I couldn’t hear God say one word, when I looked at Stephen and wondered “why,” that was when I held on to Hope.
There are lots of things we can put our hopes in. I can put my hope in Stephen being healed. I can put my hope in financial gain or material things. I can put my hope in my relationship with my husband. I can even put my hope into my own plans and schemes for now and the future. But when those hopes let you down, or things don't go the way you hoped they would, where do you go?
You go to the One who is Hope. His name is Jesus Christ.
Real Hope IS enough. When you have nothing left to hold onto and your whole world is falling apart before your eyes, there is Hope.
*Name has been changed.
I decided to start a new blog series that I hope touches whoever reads it. I want to say that each of these posts I share come from a very tender part of myself. A part that used to be completely open but is not so much anymore. A lot of me has decided to “sit down and be quiet” since my life was turned upside down by my son Stephen. However, another part of me desires to express what I feel and even more so, what God has taught me through my son’s different needs/medical issues. I believe with all of my heart that God wants me to share. Do I believe that God’s purpose in me being his Mom was for this? To become a better me? To act like I know a bunch of stuff that I didn’t before? No. I think God’s ultimate purpose in me being Stephen’s Mom is to love him and help him grow, specifically to help him grow up in Him. Yet it amazes me each and every day what God does through my child in order for me to grow up in Him.
It was pretty early on when I realized something was going on with Stephen that wasn’t “right.” In fact, when he screamed bloody murder the first couple of days while I tried to feed him, I was shocked. A baby is supposed to want to nuzzle his mother and enjoy her milk, right? At times, it seemed as though feedings were getting better. Then we would have another screaming episode, and I would be raw and bleeding. After much sought-out advice from others and trying every trick in the book, we moved to bottle-feeding. He hated that even more. It got even worse when he began vomiting, choking, gagging, turning blue, and not sleeping. After that we began seeing doctors, going through tests, trying different medicines, etc., etc… We were told that our son was “the poster child for SIDS” and to keep him upright 24/7. For months my husband and I walked around like zombies. Every waking moment was spent taking care of our son, trying to feed him and make sure he was okay. We finally opted to do a surgery that promised to help. It did, for a little while. Then things got worse when Stephen stopped eating altogether and ended up severely dehydrated and in the hospital. Finally he needed a feeding tube, and we went to Dallas for a feeding program, returning home with little to no improvement. Not long after, we discovered serious sensory integration problems, and certain milestones that Stephen had been doing (like rolling over) suddenly stopped. Developmental progress, specifically physical, was not being made. Since then, my life has consisted of doing therapy every day with him, both in clinic and at home, so that he has every opportunity to function normally.
When I was pregnant with Stephen, I had NO idea that our lives would be the way they are now. I expected being a new Mom to be glorious, and that I would have a perfect, healthy baby. And really, who doesn’t expect that while carrying a beautiful baby in the womb? It was even more unexpected because my pregnancy was normal. I read many books while pregnant, including "What to Expect When You're Expecting." What the books didn't tell me is that there is always a chance that something can go wrong. And there are many types of special needs that cannot be detected in the womb. Not once did the idea of having a baby with needs or medical problems go through my mind.
I bring up all of this to help make this post a little clearer. Because my life with Stephen, to the outside world, is not normal; but to me, it feels like coming home. Like having Stephen is where I've always belonged. I am sure that doesn’t make much sense. But if you look at things through God’s perspective, it does. I have learned that God’s plans do not make sense. He often gives us the unexpected because it is exactly what we need. And when the unexpected comes along, it is not always something we want. God’s Word says that we may plan our steps, but the Lord directs our path (Proverbs 16:9). Stephen is not the baby I expected or planned for, but he is my baby and that makes him perfect to me. Being his Mama has helped me to expect the unexpected and to not be afraid of it. I have absolutely no idea what the future looks like. Yes, there is that nagging voice that tells me to be afraid of it. But God’s Word also says that we are not to be afraid of the future because He has great plans for us (Jeremiah 29:11). He has incredible plans for my little boy. There is something special about him that goes beyond any type of special needs. And knowing God has Stephen in His hands...that I can expect great things no matter what the future looks like...is at this moment enough for me.
I know its been awhile since I've updated! Life is as hectic as usual. The crazy weather changes (hot one day, freezing the next) have brought along some yuckiness for my sweet Stephen. He was sick for about 2 1/2 weeks, first with a virus, then a mild ear infection (doctor said he was happy it was the first infection in 3 months, and it wasn't even a bad one...thank you to our chiropractor and to warm garlic oil!), then a feeding tube infection. The tube infection was the worst part because he vomited alot. It hurt for him to be fed so he lost some weight too. 2 rounds of antibiotics later, he is doing much better. Plus he gained back all his weight!
We are now doing a partial blenderized diet with him also - meaning he is now taking some real foods blended into his hypoallergenic formula. So far, he has had no reaction to apples, pears, sweet potatoes, regular potatoes, bananas (slight constipation with those), chicken, turkey, peas, spinach, strawberries, broccoli, mango, and oatmeal. Woohoo! This already means that there are plenty of things he CAN eat without a reaction, aside from the milk/soy protein intolerance. I am using either organic packets of baby food or making it myself. I like blending it myself better but since time is often limited, I do buy organic packets of food also.
Finally, Thanksgiving Day was a huge breakthrough for him with eating!!! At dinner that night, he had 15 bites of food by mouth! That is the most he's ever taken. I had to put the food in his mouth for him, and each bite was tiny tiny, but he ate it! We have been rejoicing because he has been doing great each day with trying to eat. I am SO SO SO SO SO SO SO proud of him!!!!!
A few days ago, a ministry that I follow on Twitter shared a YouTube video that a teen named Jonah made. I have no idea if Jonah was being for real or if it was just a ploy. Even if it was fake, it is a very real example of how many teens today are feeling. They are so lost. Everywhere they go someone is screaming a different message at them. I think this generation of kids and teens are experiencing a true identity crisis (though it has been in past generations also). It's even harder when you are the type of teen who isn't the football star or the homecoming queen. Bullying is at its worst and teen suicide rates have skyrocketed. In my hometown alone, the last 6 months has seen more students take their lives than you can count on 2 hands! The following video of Jonah broke my heart, but I think it needs to be seen by adults who are raising this generation of kids and the next.
I pray that this is something I will never see with my son. It is my deepest hearts cry that God would guide me in raising him to know who he is in Christ, so that he will want to serve Him wholeheartedly and live in His light.
I know I am not a perfect parent, and that Stephen is only 15 months old. But I am seeing way too many adults messing up kids' lives. I have chosen to not be a passive, blind, ignorant parent. There are already influences in Stephen's life that are working to take him out of God's hands, and I am refusing to let them win.
Parents, it's time to step up. Quit sitting around playing on the computer or doing your own adult thing all the time. Get your kids off of the computer and spend time with them. Don't shove your kids out the door or shove them into the next cool sport/club/activity. Get involved in your kids/teens' lives! Teach them the Word of God. LOVE them. Make life worth living in any way that you can, even if its just doing laundry together. Be creative. Get on the floor and interact! Have family dinners, talk about things, play games together and turn off the cell phones and the Playstations! Don't let your kids fall to the wayside because of your own ignorance and passiveness. Go to battle for your childrens' souls! Because whether you believe it or not, Satan is trying to win them over, and he's doing a good job of it.
"Direct your children onto the right path, and when they are older, they will not leave it." ~ Proverbs 22:6 (New Living Translation, emphasis mine)
I’ve been angry for a long time. For about a year to be exact. Angry and sad and scared and broken and confused and frustrated… and angry.
Angry at the unexpected, angry at things unnecessary, angry at broken dreams, angry at God. Angry at people who were supposed to be experts, angry at doctors who lied or didn’t care. Angry at friends and family who made me feel crazy. Angry at Christians for wanting me to get it together.
Angry at not being able to help my son. Angry that I thought God didn’t plan for Christians to have special needs children. Angry at those who seemed to have it so easy with their children. Angry that God had “blessed” others and not our family. Angry at those who gave up on me.
Angry that my child has had to hurt/suffer. Angry that we don’t know what went wrong. Angry that we don’t know how to prevent it from happening again. Angry that I felt God didn’t want me to be a mother.
Just. so. angry.
A year later, that anger is gone.
There are days that I am aware of the hurt that still clings to my heart in subtle ways. I still cry, but instead of every day, it is only once or twice a week.
But the anger has been replaced. I no longer go through almost every day focusing on the “what if’s,” the “why’s,” the “how’s,” the “what happened’s,” the “why me’s” and the “why them’s.”
What has replaced the anger? There are 2 things: Grace and gratitude.
The Grace of God. And gratitude, for what He has done and for what we have that could have been taken away.
I no longer look at Stephen and think if only he would/could eat, life would be great. I no longer see the problem. I see beauty, through God’s eyes. I see the gorgeous, beautiful, happy baby boy that I dreamed of when I was pregnant. I no longer see what he isn’t, but what he is. I no longer see what he can’t do, but what he can do. I see a child that is an absolute miracle, who, if but for the Grace of God, might not be here.
There are 10,000,000 other things that could have gone wrong. There are 10,000,000 other problems/issues he could have. When he was choking and turning blue, he could have died. When he stopped eating and stopped gaining weight, he could have starved. When doctors dismissed him, he could have gotten even more behind developmentally.
But he didn’t and he’s not, because of God’s Grace. And I am so unbelievably THANKFUL.
The more I get on my knees, the more I read God’s Word, the more I hear God speaking through gracious loving people, the more time I spend in His presence, and the more I focus on giving to others in need, the more I am filled with this gratitude because of His Grace.
I’ve literally felt like I’ve lived in a deep dark hole for months, a hole that was filled with anger, and then desperation from trying to get out myself. By my own stupidity, I wasn’t going to get out of that hole until God decided that I wanted Him to help me get out. He kept offering His hand, kept saying He’d pull me out, but I kept refusing because I had a “right” to be angry. I had fallen, down, down, down, so far down that I didn’t have any more strength to try and get back up.
But because of God’s Grace, I’m not in that hole anymore. I’m not even on flat ground. I’m slowly trekking up the mountain, and I’m bringing my precious little boy with me. And we are going to get to the top, by the Grace of God. And I am ridiculously full of GRATITUDE. More gratitude than anyone could understand. And there is an overwhelming sense of HOPE that I’ve been given that was wiped out.
God’s Words says that Jesus never leaves us nor forsakes us (Hebrews 13:5-6). That we can find Hope in Him, Hope that is real (Romans 15:13). That He knows us inside and out and searches our hearts (Psalm 139).
God says that we have been bought at a price through Christ’s death (1 Corinthians 7:23), and He knows every hair on our head (Matthew 10:30). That He is the one who gives and takes away (Job 1:21). That He forms life in the womb in every detail (Psalm 139:13), and He has a future and a plan for each of us (Jeremiah 29:11).
God’s Word says that we cannot understand all the ways of God as fallible man (Ecclesiastes 11:5), yet He will lead us on a straight path if we put our trust in Him (Proverbs 3:5-6).
The Lord tells us that we must walk by faith, and not by what we see (2 Corinthians 5:7). He promises us that if we come to Him in prayer, with thanksgiving, He will calm our anxious hearts (Philippians 4:6). And He says that when we can’t comprehend what’s going on, we can still have complete peace (Philippians 4:7).
Jesus wants for us to realize that if he cares for a tiny sparrow, providing food and shelter, He will care for us 1,000 times more (Matthew 6:26). God tells us to seek Him first, and everything else will somehow come together (Matthew 6:33). He tells us not to worry about tomorrow, to take it one day at a time (Matthew 6:34).
Jesus said He came so that we could have life that was abundant (John 10:10), and that by His own stripes, there is healing (Isaiah 53:5). He says that what the world considers to be blessings are actually total opposite of His idea of blessings (Matthew 5).
Jesus said that if we have faith the size of a mustard seed, that we can move (or climb) mountains (Matthew 17:20). That if we just trust Him, TRUST HIM, we can walk on water (Matthew 14) and do great works in His name (John 14:12).
My heart is so full these days, because it is full of gratitude for the Grace of God. Even though life is not the same as it used to be and it’s nothing like what others might consider normal, it is a life that God is working on, working in, and working through.
I know I have a long way to go still to get to where I need to be. But, every day that I wake up, I say thank you God, thank you for your Grace, thank you for my sweet Stephen who I know, without You, may not be in my life. Every night when I go to bed, I am thankful, even if the day has been hard or frustrating.
God keeps pouring out heaps of mercy and Grace on us. We don’t deserve it; I don’t deserve it. But for the first time in a long, long time, I am truly, utterly full of gratitude.
(If you have not read part 1 of understanding feeding disorders/aversions, please CLICK HERE first. If you did get to read it the first time, it may help to go back and read it again to remember the other 6 myths. If you do go read part 1, just click Tlitha Qum at the top to get back here.) :)
Myth #7: If there’s such a thing as a feeding disorder, then why have I never heard of it?
Feeding disorders are much like autism was 50 years ago. It was definitely around, but was not as prevalent as it is today. People didn’t know about it or understand it because it wasn’t talked about, there was little awareness, and not many educators or doctors knew how to help children who had it. These days, every 1 out of 150 children have some type of autism spectrum disorder, and almost everyone knows of someone whose child has it. Most likely in 100 years, feeding disorders will be just as “heard of” as other different needs. Today, 6-35% of children have some type of feeding disorder. It is hard to imagine a baby or child not wanting to eat or struggling to eat. But the rising numbers of books, feeding clinics/programs, and research institutions are a testament to the fact that feeding disorders/aversions do exist and are prevailing.
Myth #8: Kids who don’t like to eat are just picky eaters; a feeding disorder is too serious of a title to give a simple problem like that.
A feeding disorder is not the same as a picky eater. Even picky eaters eat what they need to maintain weight and get enough nutrition orally. Picky eaters may not like certain types of foods, but they eat large amounts of what they like to eat, which in turn keeps them healthy. Also, the great majority of picky eaters do not have any other underlying medical issues that make eating difficult, frustrating, or painful.
Myth #9: Your baby doesn’t look like he/she is struggling, so it must be made up. Don’t kids who have problems look like something is wrong with them?
NO! If you walk into any therapy clinic, or a regular classroom, it would be extremely difficult to pick out which children have special needs based on how they look alone. Some special needs are more severe than others. But some medical conditions are not obvious to the outside world. Even adults with some cancers, arthritis, diabetes, fibromyalgia, and other things do not always look unhealthy. Many adults are good at masking their pain or problems; so are children, especially children who have a typical personality and zest for life. In fact, the majority of children who have trouble eating for whatever cause, look like perfectly normal children. Of course, there are children whose special needs do affect their outside appearance, such as muscular dystrophy, cerebral palsy, and Down syndrome. When it comes to feeding, there are varying degrees of these diagnoses as well. I’ve seen children who have only mild Down syndrome who eat perfectly fine, but have trouble doing other things, like jumping rope and learning in school. I’ve seen children who have no mental handicaps, no developmental problems, and are brilliant cognitively, but have oral-motor dysfunction that prevents them from being able to chew, swallow and digest food. Not all children fit into one specific category, nor are all at the same level of disability/difficulty, even in the world of special needs.
The set-back for most people with Stephen is that he has weight on him, and he is always happy. He has gained weight because we weren’t going to let him starve, even if it meant forcing him to drink formula or bottle- feeding him around the clock while he was asleep, which worked until he completely refused and needed a tube. He is happy because we love him, we want his life to be full of joy, and we treat him as though absolutely nothing is wrong.
Now that we’ve gotten past all 9 myths, let’s look at what Kennedy Krieger, which has the #1 Feeding Disorders Clinic/Program/Research Institute in the world, says about feeding disorders:
“A child with a feeding disorder does not consume enough food (or liquid, or a broad enough variety of food) to gain weight and grow normally. General feeding difficulties are relatively common among most children. For example, a child may be a picky eater and consume a limited number of foods, but the foods eaten span all the food groups and provide a well-balanced diet. A child with a feeding disorder, on the other hand, may only eat a few foods, completely avoiding entire food groups, textures or liquids necessary for proper development. As a result, children diagnosed with feeding disorders are at greater risk for compromised physical and cognitive development. Children with feeding disorders may also develop slower, experience behavioral problems and even fail to thrive. Severe feeding disorders can cause families and children to feel socially isolated.…
There are many different types of feeding disorders, and they can take on one or more of the following forms:
• Trouble accepting and swallowing different food textures
• Throwing tantrums at mealtimes
• Refusing to eat certain food groups
• Refusing to eat any solids or liquids
• Choking, gagging or vomiting when eating
• Oral motor and sensory problems
• Gastrostomy (g-tube) or naso-gastric (ng-tube) dependence
Feeding disorders typically develop for several reasons, including medical conditions (food allergies), anatomical or structural abnormalities (e.g., cleft palate), and reinforcement of inappropriate behavior (i.e. force feeding). In most cases, no single factor accounts for a child's feeding difficulties. Rather, several factors interact to produce them. While a wide spectrum of factors can contribute to feeding disorders, certain medical and psychological conditions may accompany them:
• Gastrointestinal motility disorders
• Gastroesophageal Reflux Disease (GERD)
• Palate defects
• Failure to thrive
• Prematurity
• Oral-Motor Dysfunction (dysfunctional swallow, dysphagia, oral-motor dysphagia)
• Esophagitis
• Gastritis
• Duodenitis
• Food allergies
• Delayed exposure to a variety of foods
• Behavior management issues
• Short Gut Syndrome”
Feeding (both eating and drinking) is a complex process. When just one little part of the entire process is out of sync, is difficult, is painful, or is delayed, an infant or child can develop a feeding disorder or aversion. If there are other special needs, underlying medical conditions, or disorders going on with the child, it can make eating that much harder.
For Stephen, we believe everything began when he was born early, causing sensory issues and lack of a desire to consume what he needed to grow; things worsened when he began to reflux so severely that he would choke/gag, aspirate, turn blue-purple, and ended up needing surgery. He felt pain, therefore would only eat while sound asleep, or if we literally poured it down him so that he would gain weight. This snowballed into more sensory problems, which made him refuse to eat altogether, creating a need for a feeding tube.
Dr. Joel Macht, author of the book Poor Eaters, understands children like Stephen extremely well. In an interview with reflux guru Jan Gambino, he writes the following:
“I doubt it’s possible to prevent the gamut of problems associated with reflux and other feeding issues. Some food aversion can’t be avoided—some children experience physical discomfort from eating before we realize it, and that discomfort sets the stage for them to begin avoiding what produced the unpleasantness—eating. Likewise, some children, by necessity, are fed argumentatively from their earliest days. Satisfaction from hunger, therefore, occurs without their active participation—they feel better but they have no idea why. Requiring these children to quite suddenly consume food by mouth is often met with closed lips, turned heads, and loud screams. (If that weren’t enough, if a child learns that loud screaming causes a parent to terminate a feeding session, the child will log that lesson for future use. That, by the way, is a behavior issue.) It’s essential, therefore, to feed a child only when he’s hungry. Feeding him (forcing him) when he’s not hungry is asking for all sorts of trouble. Further, it’s quite likely that a day-old-child knows pain and has the capacity to begin avoiding it. It’s critical, therefore, to investigate whether swallowing solids or liquids produces physical discomfort. Infants do learn to turn their heads toward food. It’s just as likely they learn (quickly) to turn their heads away from food. So, find a doc who understands how hunger and pain influence a child’s willingness to eat by mouth.
The poor eater I referred to in [my] book refused food not so much because of preferences, but because he had forgotten, or never learned, that eating by mouth was an enjoyable activity that produced pleasant tastes and reduced the discomfort from hunger. Instead, he had learned that swallowing and eating were painful and frightening, and he had learned adaptive ways to avoid eating. In my judgment, had the poor eater not experienced hospitalization or illness that interfered with a natural eating sequence, had he not, by necessity, been fed by tube, had he not experienced persistent reflux or gagging, had he not come to associate eating with fear and discomfort, he would have happily eaten a taco (or a bowl of cereal) of his own design.
A final word, not so much about prevention, but about progress. Eating problems take time to develop. Reversing them takes time as well. Eating and feeding have become activities to avoid. If there is a common characteristic that universally crosses this population of chronically refluxing youngsters, it is that eating is rarely a satisfying experience. And because feeding must occur several times a day, every day of every week, frustration, disappointment and, unfortunately, anger are frequent visitors to the experience. Poor eaters and unhappy parents often follow. It takes a good plan, it takes consistency, and it takes patience. Be prepared for that frustrating two steps forward, one step backwards dance. Dig deep and find your optimism. Wear it boldly so your child can feel it.”
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Thanks so much for reading!!! I hope this helps some of you understand more about Stephen’s condition and answers questions you might have. If you have any other questions, would like more information, or have a child with reflux, a feeding disorder, sensory issues, etc... and need someone to talk to, please contact me through my email address on my profile!
(All factual information and quotes were taken from PAGER.org, infantrefluxdisease.org, the Kennedy-Krieger Institute for Pediatric Feeding Disorders, and the book Just Take a Bite.)
