Quite often, Stewart or I will post completely adorable pictures of our children, much like this one we posted on Friday of Evan:
Many of you do the same. We all love trolling through Facebook and seeing cute pictures of kids. The moments we are able to capture with our cameras nowadays are amazing. It's a blip in time where they are happy or they are doing something funny or they have accomplished something wonderful.
But they are only snapshots. The reality behind the photo is often nothing like the image you see. The reality of this picture of Evan was that very shortly after this picture was taken, I had to get him out of the chair because I was afraid he was going to fall out of it because of a seizure. I took him back inside and had to feed him because we had a gang of friends coming over for a crawfish boil, and I always have to feed him first or else we'll have a fit on our hands. He does not wait for food well. I also had to go ahead and feed him because I have to get 2 pills down him at supper time and a liquid medicine. That means I have to feed him certain kinds of food that I can hide pills inside. He can't just eat a sandwich and call it done. And this is every night - it's not just if he's sick. If he's sick, there's even more to do. Most of the time, he fights the liquid medicine so much that I have to use his feeding tube to get all the medicine in him.
Evan is almost 3 years old, so most people's expectation of him would be that he would not be doing these things anymore. But he is. Most people would expect he would be walking and talking, but he's not. I was told last week that basically he is a 6 month old. And it broke my heart. When you find out your child is going to have Down's Syndrome, you begin a grieving process for the child you thought you were going to have. For me, that grieving has not ended yet. I had such high hopes of Evan "breaking the curve" and being super outstanding at everything and us having no major issues with which to deal. But that has not been the case.
This morning in my quiet time, I read a familiar verse that pretty much sums up what I'm dealing with personally right now. Proverbs 13:12 says, “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” For us, our hope has been deferred. The Message Bible says it's an "unrelenting disappointment." That unrelenting disappointment has made my heart sick. Evan brings us much joy, yes. He is such fun when he does something new or is silly. And he is cute. But the stress and heartache of the past 3 years have made this mama's heart sick. My hope has been all but lost. But Jesus will not let me give up. He will not let me lose my hope! He has been continually drawing me to Himself through His word! Another truth that has come up often lately from my friend (and hopefully our new children's minister) Kimberly is Isaiah 43:18-19: “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” These new streams in the wasteland are going to produce a tree of life! I await it, Lord! Come and do Your new thing in Evan and in me!
Many of you do the same. We all love trolling through Facebook and seeing cute pictures of kids. The moments we are able to capture with our cameras nowadays are amazing. It's a blip in time where they are happy or they are doing something funny or they have accomplished something wonderful.
But they are only snapshots. The reality behind the photo is often nothing like the image you see. The reality of this picture of Evan was that very shortly after this picture was taken, I had to get him out of the chair because I was afraid he was going to fall out of it because of a seizure. I took him back inside and had to feed him because we had a gang of friends coming over for a crawfish boil, and I always have to feed him first or else we'll have a fit on our hands. He does not wait for food well. I also had to go ahead and feed him because I have to get 2 pills down him at supper time and a liquid medicine. That means I have to feed him certain kinds of food that I can hide pills inside. He can't just eat a sandwich and call it done. And this is every night - it's not just if he's sick. If he's sick, there's even more to do. Most of the time, he fights the liquid medicine so much that I have to use his feeding tube to get all the medicine in him.
Evan is almost 3 years old, so most people's expectation of him would be that he would not be doing these things anymore. But he is. Most people would expect he would be walking and talking, but he's not. I was told last week that basically he is a 6 month old. And it broke my heart. When you find out your child is going to have Down's Syndrome, you begin a grieving process for the child you thought you were going to have. For me, that grieving has not ended yet. I had such high hopes of Evan "breaking the curve" and being super outstanding at everything and us having no major issues with which to deal. But that has not been the case.
This morning in my quiet time, I read a familiar verse that pretty much sums up what I'm dealing with personally right now. Proverbs 13:12 says, “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” For us, our hope has been deferred. The Message Bible says it's an "unrelenting disappointment." That unrelenting disappointment has made my heart sick. Evan brings us much joy, yes. He is such fun when he does something new or is silly. And he is cute. But the stress and heartache of the past 3 years have made this mama's heart sick. My hope has been all but lost. But Jesus will not let me give up. He will not let me lose my hope! He has been continually drawing me to Himself through His word! Another truth that has come up often lately from my friend (and hopefully our new children's minister) Kimberly is Isaiah 43:18-19: “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” These new streams in the wasteland are going to produce a tree of life! I await it, Lord! Come and do Your new thing in Evan and in me!
What an amazing mom! Prayers for you and Stewart. So inspiring. Thanks for being vulnerable enough to share.
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