...May Flowers. That is how the saying goes. But, nobody says there could be thorns on those flowers, or that they might need some tending. As far as gardening goes, everyone in my family...on both sides, are these amazing green thumbs. Then, there is me. I am the absolute antithesis of a green thumb...my thumb is the grim reaper. I killed a flower that only needed one ice cube per week. I also killed the hardy kale plant. It is almost like a plant looks at me and just gives up the will to live.
I began this post with that old adage, because I think that is how I expected May to be. Happy. Full of flowers, beauty, and ease. April was tough. It was an intense whirlwind of change and trial. Although there were a few rainbows among the "showers," there were a lot of days that I felt cold, drained, and in need of shelter. May was supposed to be sunny and cheerful. Instead, it began with more showers that evolved into a ruthless storm. My fleshly response was a bit of shock. I felt like I had really "gone through the wringer" last month, and was quite ready for a respite from chaos.
We began the month with the final step (for now) of Joy Baby's paperwork and home visit for Medicaid. The process was revised in January of this year, so everything was new for me. Although I have done the application two previous times, it was brand new, which really unnerved me. To add to my nerves, I was told to prepare for a denial, which would lead to an appeal or a re-application. Fun times to be sure. In comparison to what came next, this now seems like a little "sprinkle on a sunny day."
A long time ago, I dedicated myself to full-time service to the Lord. When I stood up in church making that pledge, I meant that I wanted to be a missionary overseas spreading the Gospel to Indian tribes in the jungle. What God meant was I was going to serve on American soil, to five plus two kiddos-all needing some type of special care, while I live with a disease that prevents me from ever living in a healthy way outside of a first-world country. I never expected attack from those I was serving. I've heard pastor's say that the sheep bite, but man! they are downright mean sometimes! When cooking (or some fashion of making food-ish type things...I'm not a gourmet cook, either...), cleaning, bathing, loving, and laundering for yields screaming phone calls and vile texts. When a misunderstanding leads to attacks on character. When anger leads to using the very ones you say you love as pawns. I was not prepared. I was not prepared for how the series of events fleshed out sin in my life. Ironically enough, the revelation of my own sin lead me to anger...a not-so-godly response...
Then came the evidences of grace. A husband who patiently loved me. Sometimes his love has been painful-not in an abusive way, but in a way that was used to lead me back to the Lord. He consoled when I needed it, and pointed out areas I had let sin win, always cloaked in the tenderness of his faithful love. I've spoken of how much I love our church. I am not one to reach out for help often...but this time, I was desperate enough to set pride aside. When I called to talk to our pastor, he set aside whatever he was working on to listen to the situation. He encouraged, exhorted, and then prayed for our family-over the phone. Our pastor approached the Throne of Grace on our behalf-asking for grace, discernment, and wisdom. Seriously, if you need a church...
I think the truth is, April showers bring work. Sure, there are May flowers, but there is also a lot of grass that needs to be mowed. There are weeds among the flowers that must be taken out, or the flowers will die. There are rodents-even some cute ones-that will eat the buds of those flowers when they are not carefully guarded. Those flowers also start attracting insects. Bees that will sting, ants that get into the house, flies, and more of the creepy-crawly ones that make my skin crawl. Upon deeper evaluation, there is an abundance of things that just want to destroy the flowers. Springtime is not a time for complacency. I suppose a farmer or a green thumb knows that well. Yes, there is a time to sit and enjoy the beauty around us, but that beauty can only be enjoyed after actively maintaining and guarding the plants. And then, you have to get back to work...otherwise, April showers just bring May chaos.
Wednesday, May 11, 2016
Wednesday, April 20, 2016
If God...
Autism Awareness Month (April) has been especially trying this year. At the beginning of the month, we had Joy Baby's 18 month check up, during which it was determined she needed to be evaluated for autism. I decided not to say anything about this, because sometimes it seems talking about a "potential issue" causes a bit more chaos than intended. As I started the inquiries to find a doctor for her, we quickly learned our insurance company would not cover any evaluation for her, and the insurance company is protected from prosecution because they are based out of the State for us. Another issue we have is that since our older two boys are receiving in-home therapy, a lot of other companies will not evaluate another child, since they would not be able to provide the in-home therapy upon diagnosis. (Typically, two different ABA companies will not provide therapy in the same home at the same time...either due to liability or programming rules.)
About two weeks ago, I found a doctor who would be willing to evaluate Joy Baby. She was out-of-network, expensive, and a good distance away, but she had an opening, was willing to evaluate, and we have few options. I had a few concerns with her, but Richard was willing, so I set the appointment. A week later, I decided to try one more company. They were fairly sure they were also out-of-network, but were willing to work with us. Early Monday morning, I received a phone call that set a different series of events rolling. This company was still not in-network for our insurance, but they charged significantly less, were 45 minutes closer, and had just had a cancellation, so they had an opening Tuesday afternoon. They emailed me 27 pages of documentation I had to fill out, and told us they would see us the next day. The roller coaster ride of emotions I went through in a 24 hour period was intense. Every fear, worry, doubt, and painful memory surfaced. Along with those emotions is the torture of filling out paperwork that describes the many struggles your precious child has...in great detail. Since the evaluation is only around two hours, a lot rides on the testimony of the parents. For four hours, I had to focus on all the "bad." One question out of 27 pages asked about the positive traits of our child, and what makes them "likeable." For whatever reason, this was the question that caused my tears to flow. All I could answer was that I loved her. I wanted to know why she struggles...autism or not, I needed help to help her, because when her smile fades, she is hurting, and its painful for everyone around.
Tuesday morning, I was awakened at 4am, and the worry began. A still-small Voice whispered, "I've got this" a quiet hug to go back to sleep. The first song to play on my running playlist was, "Call it Grace" by Unspoken. If you've ever tried to run while crying...it's ugly...and really hard to breath! Within a few hours, two times God let me know how much He loves me and her. He wasn't absent, or surprised, and had divinely ordained for Chara to be ours, and for the series of events to take place. I'm not saying I was super calm and didn't worry for the rest of the day...I kinda did...but His rescue was there. At the end of our two hour appointment, we learned that we were a family who has three kiddos with autism. By God's grace, Richard was able to get off of work the entire day. We celebrated being a family with tacos and a movie. We didn't talk about the day, we just ate and watched a silly movie. It was a little more difficult for me to laugh, and a lot more difficult for me to not get frustrated with squabbles between the kids. There was sin, and there was a plethora of Grace.
Now begins a six-month period of paperwork with the government. We will have home visits, evaluations, and a lot of hurry up and wait. If everything goes as it should, at the end of the six months, Chara will have disability funding to pay for her in-home therapy. She will continue receiving speech through Birth to Three, since she doesn't talk, but that is a separate program.
A former pastor of ours often said, "If God brings you to it, He will bring you through it." I'm so glad this is true, because facing this on my own would be incredibly overwhelming. One of my most favorite songs right now is "Trust in You," by Lauren Daigle. I'll close with the chorus, which is what my heart's cry has been:
When You don't move the mountains, I wanted You to move,
When You don't part the waters, I wish I could walk through,
When You don't give the answers, as I cry out to You,
I will trust,
I will trust,
I will trust in You.
About two weeks ago, I found a doctor who would be willing to evaluate Joy Baby. She was out-of-network, expensive, and a good distance away, but she had an opening, was willing to evaluate, and we have few options. I had a few concerns with her, but Richard was willing, so I set the appointment. A week later, I decided to try one more company. They were fairly sure they were also out-of-network, but were willing to work with us. Early Monday morning, I received a phone call that set a different series of events rolling. This company was still not in-network for our insurance, but they charged significantly less, were 45 minutes closer, and had just had a cancellation, so they had an opening Tuesday afternoon. They emailed me 27 pages of documentation I had to fill out, and told us they would see us the next day. The roller coaster ride of emotions I went through in a 24 hour period was intense. Every fear, worry, doubt, and painful memory surfaced. Along with those emotions is the torture of filling out paperwork that describes the many struggles your precious child has...in great detail. Since the evaluation is only around two hours, a lot rides on the testimony of the parents. For four hours, I had to focus on all the "bad." One question out of 27 pages asked about the positive traits of our child, and what makes them "likeable." For whatever reason, this was the question that caused my tears to flow. All I could answer was that I loved her. I wanted to know why she struggles...autism or not, I needed help to help her, because when her smile fades, she is hurting, and its painful for everyone around.
Tuesday morning, I was awakened at 4am, and the worry began. A still-small Voice whispered, "I've got this" a quiet hug to go back to sleep. The first song to play on my running playlist was, "Call it Grace" by Unspoken. If you've ever tried to run while crying...it's ugly...and really hard to breath! Within a few hours, two times God let me know how much He loves me and her. He wasn't absent, or surprised, and had divinely ordained for Chara to be ours, and for the series of events to take place. I'm not saying I was super calm and didn't worry for the rest of the day...I kinda did...but His rescue was there. At the end of our two hour appointment, we learned that we were a family who has three kiddos with autism. By God's grace, Richard was able to get off of work the entire day. We celebrated being a family with tacos and a movie. We didn't talk about the day, we just ate and watched a silly movie. It was a little more difficult for me to laugh, and a lot more difficult for me to not get frustrated with squabbles between the kids. There was sin, and there was a plethora of Grace.
Now begins a six-month period of paperwork with the government. We will have home visits, evaluations, and a lot of hurry up and wait. If everything goes as it should, at the end of the six months, Chara will have disability funding to pay for her in-home therapy. She will continue receiving speech through Birth to Three, since she doesn't talk, but that is a separate program.
A former pastor of ours often said, "If God brings you to it, He will bring you through it." I'm so glad this is true, because facing this on my own would be incredibly overwhelming. One of my most favorite songs right now is "Trust in You," by Lauren Daigle. I'll close with the chorus, which is what my heart's cry has been:
When You don't move the mountains, I wanted You to move,
When You don't part the waters, I wish I could walk through,
When You don't give the answers, as I cry out to You,
I will trust,
I will trust,
I will trust in You.
Tuesday, April 5, 2016
April
April is Autism Awareness month. In case you didn't notice, that's why there are a few extra blue lightbulbs at entryways. Facebook has a few extra photos of puzzle pieces. Several big name groups are putting out statistics of those on the Spectrum. If you're me, you've painted your toenails blue, and run a half-marathon for Autism Awareness. I don't need a month to remind me of Autism, though. I don't need anything, as it stares me in the face every.single.day. There are two crystal blue eyes, and two sets of brown eyes.
Here are some statistics:
Did you know 1 in 68...blah blah blah.
Did you know shoes are a big deal? Yep. He wears shoes until there are holes in them, and when I insist on a new pair, he cries at the store...even when I find a pair with Star Wars on them.
Did you know he makes you look lazy? Oh, yeah. He works 10-12 hour days five days a week, and then works 6-8 hours per day over the weekend. Seven days per week, he is in school and/or therapy.
Did you know socks are a big deal? Yep. He used to fight them until he was in hysterics. Now, if they don't have a grey bottom, he will let you know they are wrong.
Did you know socks are a big deal? Yes, part 2. She hates them. She will scream during a diaper change until they are off.
Did you know shoes are a big deal? Yes, part 2. She screams until they are off. Not a casual scream, but "I'm-about-to-die-and-I'm-taking-you-with-me" scream.
Did you know food is a big deal? Specific brands are required, and they know if you try to change them. Textures, temperature, amount, food touching, color, and any other characteristic will arise to come in and ruin a meal.
Did you know bath time can be a battle? Water temperature, amount of toys, water near the eye, fear, that list goes on as well.
Did you know no two kids are alike? If you've met one kid with autism, you've met one kid with autism. That means you are not an expert, and Rainman does not describe my kids, or most any others. And please, don't even get me started on "eye contact."
Did you know there is isolation? School parties, church events, or open-to-the-public events, IF we can get out of therapy and still make our hours so we don't lose funding, the invitations get "lost", or the setting is not conducive to their success, or we're just too worried one thing could set off yet another meltdown.
Did you know there are guilt trips? If you don't, you've probably sent me or someone else down one. Everyone has an opinion on how we're raising all of our kids. It's not good enough for those on the Spectrum, or we're ignoring our neuro-typical kids, or we've caused our kiddos autism, or our other kids feel left out and will rebel and hate us as they age.
People say kids on the spectrum need to learn how to communicate properly. Honestly, a lot more people need to remember to close their own mouths and start using a filter before they pass judgment, or "give their opinion."
Did you know the divorce rate for parents of kids on the Spectrum is over 80%? Once again, try to just love the people who are dying to save their kids. Parenting isn't easy. Now parent kids on the spectrum, and you've got a recipe for disaster. You think we haven't thought of some scenario? Oh, we've thought about it, wrestled with it, fought over and about it, and just laid it aside to deal with the problem right in front of us...like making sure our baby doesn't smash her head on the floor during the current meltdown.
This may sound like an angry post, but it is not. Not in any way. Sometimes, though, it helps to remember that the sunshine and roses are only highlights of the stormy days and thorns. We fight with therapists and insurance, we wrestle with guilt, and we fail at least one of our kids on a constant basis. BUT, I love these kids. I couldn't be any prouder of how hard they work, how much they've grown, or just how cute they are. I am grateful every day that I have the privilege to be their mom. I wear my blue toenails with great pride, because my kids are awesome. I love how my two neuro-typical kids are learning to love those that others roll their eyes at. I love the special dates I take those two on, to make sure they know they are equally loved. I'm so very grateful for how much closer I've grown in my relationship with the Lord, because I have to lean on Him for everything. I'm so grateful for my husband who has supported, listened and fought alongside me for our kids, and for us. I'm also thankful for those who have loved us without flinching. I am so thankful that adults want to talk with us about our kids. I love it when we get asked questions because someone cares enough to ask. I do not ever want to be unapproachable, although if I'm wrestling with one of my kids, you might need better timing... ;) I love grace. It's in every moment, even if it seems to be hiding. I love this season, the newness, and the beautiful reminder that He is Risen, victorious, and one glorious day He will take away every tear.
Until then, I'll close this brief-ish post for the day. I don't get out much, so I'm out of adult words, anyway, and one of my kids is trying to remind me my lap is hers, not the computers...and I fear for the computer. Happy April!
Here are some statistics:
Did you know 1 in 68...blah blah blah.
Did you know shoes are a big deal? Yep. He wears shoes until there are holes in them, and when I insist on a new pair, he cries at the store...even when I find a pair with Star Wars on them.
Did you know he makes you look lazy? Oh, yeah. He works 10-12 hour days five days a week, and then works 6-8 hours per day over the weekend. Seven days per week, he is in school and/or therapy.
Did you know socks are a big deal? Yep. He used to fight them until he was in hysterics. Now, if they don't have a grey bottom, he will let you know they are wrong.
Did you know socks are a big deal? Yes, part 2. She hates them. She will scream during a diaper change until they are off.
Did you know shoes are a big deal? Yes, part 2. She screams until they are off. Not a casual scream, but "I'm-about-to-die-and-I'm-taking-you-with-me" scream.
Did you know food is a big deal? Specific brands are required, and they know if you try to change them. Textures, temperature, amount, food touching, color, and any other characteristic will arise to come in and ruin a meal.
Did you know bath time can be a battle? Water temperature, amount of toys, water near the eye, fear, that list goes on as well.
Did you know no two kids are alike? If you've met one kid with autism, you've met one kid with autism. That means you are not an expert, and Rainman does not describe my kids, or most any others. And please, don't even get me started on "eye contact."
Did you know there is isolation? School parties, church events, or open-to-the-public events, IF we can get out of therapy and still make our hours so we don't lose funding, the invitations get "lost", or the setting is not conducive to their success, or we're just too worried one thing could set off yet another meltdown.
Did you know there are guilt trips? If you don't, you've probably sent me or someone else down one. Everyone has an opinion on how we're raising all of our kids. It's not good enough for those on the Spectrum, or we're ignoring our neuro-typical kids, or we've caused our kiddos autism, or our other kids feel left out and will rebel and hate us as they age.
People say kids on the spectrum need to learn how to communicate properly. Honestly, a lot more people need to remember to close their own mouths and start using a filter before they pass judgment, or "give their opinion."
Did you know the divorce rate for parents of kids on the Spectrum is over 80%? Once again, try to just love the people who are dying to save their kids. Parenting isn't easy. Now parent kids on the spectrum, and you've got a recipe for disaster. You think we haven't thought of some scenario? Oh, we've thought about it, wrestled with it, fought over and about it, and just laid it aside to deal with the problem right in front of us...like making sure our baby doesn't smash her head on the floor during the current meltdown.
This may sound like an angry post, but it is not. Not in any way. Sometimes, though, it helps to remember that the sunshine and roses are only highlights of the stormy days and thorns. We fight with therapists and insurance, we wrestle with guilt, and we fail at least one of our kids on a constant basis. BUT, I love these kids. I couldn't be any prouder of how hard they work, how much they've grown, or just how cute they are. I am grateful every day that I have the privilege to be their mom. I wear my blue toenails with great pride, because my kids are awesome. I love how my two neuro-typical kids are learning to love those that others roll their eyes at. I love the special dates I take those two on, to make sure they know they are equally loved. I'm so very grateful for how much closer I've grown in my relationship with the Lord, because I have to lean on Him for everything. I'm so grateful for my husband who has supported, listened and fought alongside me for our kids, and for us. I'm also thankful for those who have loved us without flinching. I am so thankful that adults want to talk with us about our kids. I love it when we get asked questions because someone cares enough to ask. I do not ever want to be unapproachable, although if I'm wrestling with one of my kids, you might need better timing... ;) I love grace. It's in every moment, even if it seems to be hiding. I love this season, the newness, and the beautiful reminder that He is Risen, victorious, and one glorious day He will take away every tear.
Until then, I'll close this brief-ish post for the day. I don't get out much, so I'm out of adult words, anyway, and one of my kids is trying to remind me my lap is hers, not the computers...and I fear for the computer. Happy April!
Wednesday, February 3, 2016
Joy Baby
Up to this point, I've not written about our journey to Joy Baby. It is a long journey, with more depth of emotion than anything else in my life. As I've written in the past, we went through some really dark and difficult times before her conception and birth. The journey started with miscarriages-four in a row. Then, we walked through infertility. The concept of this is still close to mind boggling to me. Without any TMI, fertility was never even a thought for us. He looked at me...and that just about did it. My body was in a very weird state, and my hormones were trying to decide if I was still even a girl. So, for the craziest four months of my life (I serious started to doubt my sanity...), I was on fertility drugs. For the record, I fully understand that for most women, this doesn't even begin to cover what others have gone through to have a baby. For me, though, I couldn't take it anymore. I was done. The mood swings I had on those things were simply awful. In addition, the span of what I was on pretty much said if they didn't work in that time frame, it wasn't going to happen. For the first time in my life, I had all negative pregnancy tests. Nothing-not even a hint of a hint. So, I got down on my knees, cried out to the Lord, let Him know my heart was broken, but our #5 was His. We gave away over twenty boxes of baby/toddler clothes. And then, a month later...
You would think that after all this, I would have trusted that this Baby was meant to be. You would think I would have been confident that this little one would survive. Nope. It was a moment by moment battle at times for me to not completely freak out that Baby would die. I knew being worried was sinful, so I battled, but the battle was horrendous. I was so afraid of the "Cinderella Story." I didn't expect to finally have our much-desired baby, when so so many I knew could not even have one. I was afraid to rejoice, because I was so afraid of the pain of loss. I had been down the "loss road" before, and felt I had barely survived. I knew so many others definitely "deserved" a baby way more than I did.
Her pregnancy was my worst. I've never been sicker, and I had not had "easy" pregnancies before. I threw up throughout the entire nine months, to the point of throwing up blood due to intense heartburn. I could go on, but I won't, because for most people, pregnancy is no picnic. Then, her labor. Now, remember, I had done the labor thing four times previously. I had a 12lb. 3oz. baby boy without any pain meds, and did it without ever screaming. (Not that it felt great...) Not this time. Pitocin was not my friend, and when it finally kicked in, they gave me some drug to help ease the pain. The drug sent me to outer space. I was floating above my body, could feel every single stab of pain, had a Minnie Mouse head bouncing all over the room, and screamed like I've never screamed before. I couldn't stop, and honestly, I have no idea how she was born, because I could not do anything but scream. Then, she was here. They showed her to me, and she was purple. My first question about my long awaited daughter was, "Is she alive?" I honestly thought she was dead. I remember the shock on the nurses faces when I asked this, and will never forget the responses of understanding compassion they had. They wrapped her up, and placed her on me for just a few moments, as they were taking her to the NICU. I had never cried the first time I held one of my littles, but I sobbed over her. My mom took a picture, and it is one of my most treasured. Then, there was the NICU. Baby jail. (The nurses actually call it that...not those on that floor, though!) I got yelled at for picking her up. She kept popping out her IV's, so they ended up finally going through her belly button. Even that one almost popped out, even though there was a stitch to keep it in place. For five days, I stayed with her. I never left the hospital, but my husband and the other four had to be at home. Richard brought the kids for lunch one afternoon. When they left, my special guy did not understand why I wasn't with them. I hope I never again see the face, the tears, or hear the screams that he had that day.
Finally, we were home. Once again, you would think that I would be completely trusting that all would be well. Once again, it was a moment by moment battle for me to not worry about her. Between post-partum hormones, my own natural sinful fears, along with sleep deprivation, I was a wreck. When she was three months old, I was reading my Bible, and stopped to check on her. And that was it. I knew it had to stop. I named her out of Philippians-Joy and Grace. Yet, I had no joy, because I was constantly in fear, and never allowed God's grace to cover her...and me. She was His, whether I liked it or not, and I could not do one thing to adjust her life span-however long it was designed to be.
The irony is, my Joy Baby is in a virtual tie for my most difficult baby. She is a crazy picky eater, a horrible sleeper, is already in physical therapy, and is about to transition to Speech and Occupational therapy. She finally started walking at 17 months old, and has no words at 18 months. The only reason she is not my most difficult, is that I have a few more tools to handle her behavior.
Why did I write this? Because you don't post "this kinda stuff" on Facebook. You post a photo of a smile, or write something cute one of the kids did that day. You have 500 friends who see whatever façade you put out there. And that's not necessarily wrong, but there are so many who struggle. I'm not proud of my struggle, but it is real. I don't have it "all together." I'm so grateful for Christ, Who has patiently and lovingly walked me through each day. No, He is not my crutch, He is my stretcher. I am a desperate sinner who needs His extravagant grace. Why did He bestow this amazing gift on me? Because He is gracious and loving. Why doesn't He bestow the same gifts on so many of those who desperately desire the same thing? I don't know. What I do know: He has a plan. I also know the pain of getting through that plan is worth it. No, I am not thankful for the "yuck" I've had to go through. (Side note: I am not grateful for disease, miscarriage, infertility, autism, ....the yuck.) I am thankful, though, for what He taught me along the way, and is continuing to teach me as I walk the path He set out for me. I could not be more grateful for our Joy Baby. I love her with a fierce love, and will protect her with every ounce of my strength. And the Joy she has brought to our entire family is abundant.
You would think that after all this, I would have trusted that this Baby was meant to be. You would think I would have been confident that this little one would survive. Nope. It was a moment by moment battle at times for me to not completely freak out that Baby would die. I knew being worried was sinful, so I battled, but the battle was horrendous. I was so afraid of the "Cinderella Story." I didn't expect to finally have our much-desired baby, when so so many I knew could not even have one. I was afraid to rejoice, because I was so afraid of the pain of loss. I had been down the "loss road" before, and felt I had barely survived. I knew so many others definitely "deserved" a baby way more than I did.
Her pregnancy was my worst. I've never been sicker, and I had not had "easy" pregnancies before. I threw up throughout the entire nine months, to the point of throwing up blood due to intense heartburn. I could go on, but I won't, because for most people, pregnancy is no picnic. Then, her labor. Now, remember, I had done the labor thing four times previously. I had a 12lb. 3oz. baby boy without any pain meds, and did it without ever screaming. (Not that it felt great...) Not this time. Pitocin was not my friend, and when it finally kicked in, they gave me some drug to help ease the pain. The drug sent me to outer space. I was floating above my body, could feel every single stab of pain, had a Minnie Mouse head bouncing all over the room, and screamed like I've never screamed before. I couldn't stop, and honestly, I have no idea how she was born, because I could not do anything but scream. Then, she was here. They showed her to me, and she was purple. My first question about my long awaited daughter was, "Is she alive?" I honestly thought she was dead. I remember the shock on the nurses faces when I asked this, and will never forget the responses of understanding compassion they had. They wrapped her up, and placed her on me for just a few moments, as they were taking her to the NICU. I had never cried the first time I held one of my littles, but I sobbed over her. My mom took a picture, and it is one of my most treasured. Then, there was the NICU. Baby jail. (The nurses actually call it that...not those on that floor, though!) I got yelled at for picking her up. She kept popping out her IV's, so they ended up finally going through her belly button. Even that one almost popped out, even though there was a stitch to keep it in place. For five days, I stayed with her. I never left the hospital, but my husband and the other four had to be at home. Richard brought the kids for lunch one afternoon. When they left, my special guy did not understand why I wasn't with them. I hope I never again see the face, the tears, or hear the screams that he had that day.
Finally, we were home. Once again, you would think that I would be completely trusting that all would be well. Once again, it was a moment by moment battle for me to not worry about her. Between post-partum hormones, my own natural sinful fears, along with sleep deprivation, I was a wreck. When she was three months old, I was reading my Bible, and stopped to check on her. And that was it. I knew it had to stop. I named her out of Philippians-Joy and Grace. Yet, I had no joy, because I was constantly in fear, and never allowed God's grace to cover her...and me. She was His, whether I liked it or not, and I could not do one thing to adjust her life span-however long it was designed to be.
The irony is, my Joy Baby is in a virtual tie for my most difficult baby. She is a crazy picky eater, a horrible sleeper, is already in physical therapy, and is about to transition to Speech and Occupational therapy. She finally started walking at 17 months old, and has no words at 18 months. The only reason she is not my most difficult, is that I have a few more tools to handle her behavior.
Why did I write this? Because you don't post "this kinda stuff" on Facebook. You post a photo of a smile, or write something cute one of the kids did that day. You have 500 friends who see whatever façade you put out there. And that's not necessarily wrong, but there are so many who struggle. I'm not proud of my struggle, but it is real. I don't have it "all together." I'm so grateful for Christ, Who has patiently and lovingly walked me through each day. No, He is not my crutch, He is my stretcher. I am a desperate sinner who needs His extravagant grace. Why did He bestow this amazing gift on me? Because He is gracious and loving. Why doesn't He bestow the same gifts on so many of those who desperately desire the same thing? I don't know. What I do know: He has a plan. I also know the pain of getting through that plan is worth it. No, I am not thankful for the "yuck" I've had to go through. (Side note: I am not grateful for disease, miscarriage, infertility, autism, ....the yuck.) I am thankful, though, for what He taught me along the way, and is continuing to teach me as I walk the path He set out for me. I could not be more grateful for our Joy Baby. I love her with a fierce love, and will protect her with every ounce of my strength. And the Joy she has brought to our entire family is abundant.
Friday, January 15, 2016
Mommy, I'm Sorry
It was not a normal Monday in our home. Our therapist for the night was ill, and for the first time since Christmas, it was just us, the five kidlets and me. Our +2 were with their mom, so it was supposed to be quieter. I made a special (not healthy, but fun!) dinner, and they were all sitting around the table. Joy Baby, though, was not feeling the "love." She had been in a mood for most of the day. She was on a nap and hunger strike-not the greatest of combinations.
She screamed in her high chair as I served dinner to the older four. It was a bit tense, as new foods can be met with a lack of enthusiasm with the younger boys. But, they were ready to try, and the older two were so excited, it seemed their mood rubbed off on the younger boys. No matter what foods I tried with Joy Baby, she just screamed in her chair. As I set the final sandwich in front of the kiddos, she picked up her favorite (normally!) granola bar, and flung it as hard as her frustrated hands could throw.
My Timmy looked at me and said, "Mommy, I'm sorry." Since he has the opportunity to say this quite a bit, I asked him what he was sorry for...I could not remember any errors in the recent past. He looked at me and explained he was sorry Chara was crying and frustrated, and not eating. His sentence stopped me in my tracks. Although he can be very sensitive, he also has a streak of "unawareness" that usually typifies his behavior. I had not said much of anything to that point, except to try to calm Chara, and to hand the kids their food. I looked at Timmy and Naomi, and decided to pause. I let them know that when they were little, I probably would have disciplined that type of behavior, thinking they were being naughty. But, because of the boys in our house, I had learned that sometimes screaming and crying is so much more than "naughtiness." As I picked up Chara and rubbed her back, her kicking and screaming started to settle. I told the kids that when Titus was little, I had no idea how to help a frustrated, over-stimulated baby, but now I had things to do to help her. I took Joy Baby to the rocker, wrapped her in her blanket, and just rocked and massaged her until she was calm. Timmy then stated that Chara was probably going to "get autism." I told him it was a bit early to even be able to know, and that it was ok. They've seen the worst. He and Naomi have lived through some really, really rough times in our home. His matter-of-fact statement brought me such joy. As he said his baby sister would have autism, there wasn't even a hint of animosity toward her or autism in general. It was acknowledgement that it was tough, and loud, and messy, and not what one might "choose", but it was love. A love for his baby sister, and a love toward us. This is his family, and he loves them just exactly how they are.
Somehow, I get to be the one blessed. What a gift.
She screamed in her high chair as I served dinner to the older four. It was a bit tense, as new foods can be met with a lack of enthusiasm with the younger boys. But, they were ready to try, and the older two were so excited, it seemed their mood rubbed off on the younger boys. No matter what foods I tried with Joy Baby, she just screamed in her chair. As I set the final sandwich in front of the kiddos, she picked up her favorite (normally!) granola bar, and flung it as hard as her frustrated hands could throw.
My Timmy looked at me and said, "Mommy, I'm sorry." Since he has the opportunity to say this quite a bit, I asked him what he was sorry for...I could not remember any errors in the recent past. He looked at me and explained he was sorry Chara was crying and frustrated, and not eating. His sentence stopped me in my tracks. Although he can be very sensitive, he also has a streak of "unawareness" that usually typifies his behavior. I had not said much of anything to that point, except to try to calm Chara, and to hand the kids their food. I looked at Timmy and Naomi, and decided to pause. I let them know that when they were little, I probably would have disciplined that type of behavior, thinking they were being naughty. But, because of the boys in our house, I had learned that sometimes screaming and crying is so much more than "naughtiness." As I picked up Chara and rubbed her back, her kicking and screaming started to settle. I told the kids that when Titus was little, I had no idea how to help a frustrated, over-stimulated baby, but now I had things to do to help her. I took Joy Baby to the rocker, wrapped her in her blanket, and just rocked and massaged her until she was calm. Timmy then stated that Chara was probably going to "get autism." I told him it was a bit early to even be able to know, and that it was ok. They've seen the worst. He and Naomi have lived through some really, really rough times in our home. His matter-of-fact statement brought me such joy. As he said his baby sister would have autism, there wasn't even a hint of animosity toward her or autism in general. It was acknowledgement that it was tough, and loud, and messy, and not what one might "choose", but it was love. A love for his baby sister, and a love toward us. This is his family, and he loves them just exactly how they are.
Somehow, I get to be the one blessed. What a gift.
Monday, August 31, 2015
T+1
This is actually not a post about autism...although because autism is in our house, there may be a mention or two...
So, since autism awareness is a daily thing in our lives, along with ABA therapists, as I have written about, I am fairly stuck at home. In a day and age where the book, "Radical" and others on that topic are pervasive, I have to fight the temptation to be frustrated or feel guilt for not physically, "going out and doing some BIG things for God." The Lord has made it abundantly clear to me that He has planted me where I am, and visions of "Christian Grandeur" need to be set aside on pride's altar. That being said, my heart's desire is still to serve the Lord in whatever capacity He chooses. So, I prayed. And, I've continued to pray, more specifically in this season of being "home bound" for opportunities for ministry. Nine months in, and the majority of the ministry had been on my heart-the Lord revealing some parental ugliness that needed to be repented of and fixed. Although I kept praying for opportunities, I honestly thought that perhaps my season was one of quiet ministry to our family, and I was finally okay with that.
If you've walked through seasons of learning, you know what's coming next. God determined I had at least passed the current quiz, so it was time for some "new material." (Sorry, I'm in the back-to-school mode!) Facebook has plenty of negative issues, but one positive is that it can and does connect people to others with a need. Long story short-a request for a babysitter turned into two little girls a few days later entering our home to sleepover so their mom could work. What began on a trial basis quickly turned into a solid commitment from Richard and I, and a blossoming area for service we did not expect. I was quite careful to guard my heart. I did not want to get hurt when the girls were pulled away from our family. I knew their mom was throwing around the idea of adoption, and with five of our own-two in the midst of therapy-we knew there were plenty of other couples who would be so much better suited to love and care for the girls.
Almost four months into our babysitting agreement, I knew where I stood. I loved the girls, and would happily take them each night their mom worked. I was quietly confident the Lord had worked in my heart to be grateful for this small area of service. Growing up, I was very blessed to have an incredibly stable home. But, my mom did not have that same luxury. The story of her youth is so horrible, if you heard it, you would think she made it up. One of the things I remember most of her story was feeling like a pawn, the constant moving from one parent to another, and the fear of being split up from her two brothers. Because of my mom's insanely difficult background, she's never been one to display a lot of emotion. When she described the fear of losing her brothers, though, I saw in her eyes a reflection of deep pain that cut me to the core. (Back to the present...) I received a text from the girls' mom that her living situation was unexpectedly changing, and she might have to split up the two girls.
As the situation began to appear more and more dire, Richard's and my heart were united in a common purpose. Within the period of a few weeks, the decision for us to be "Trucks plus One" was made. The older little girl would move in with us, and (by God's awesome work!) would attend school with all of our kiddos. Richard and I have felt deep conviction that we would not ask for any type of "legal" agreement (we are not legal guardians or foster parents). Just this week, she moved in. We are very much in a transitional stage right now. This is so very far outside of my comfort zone, but I'm so very grateful. I'm watching the Lord grow our marriage, unite our family, and see Him provide grace sufficient for the day. As a confessed "Type A Planner", once again, He's reminding me I cannot worry about tomorrow, but need to trust for today. I'm (working on) finding freedom in His sovereignty and His grace. And, I'm watching Him allow a full circle take place. For today, the girls will not be split up. There is no such thing as "coincidences." Our situation today has been divinely orchestrated...beginning over a half-century ago! As my husband said, Ephesians 2:10 applies just as much today as it did when it was written, "For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them."
So, since autism awareness is a daily thing in our lives, along with ABA therapists, as I have written about, I am fairly stuck at home. In a day and age where the book, "Radical" and others on that topic are pervasive, I have to fight the temptation to be frustrated or feel guilt for not physically, "going out and doing some BIG things for God." The Lord has made it abundantly clear to me that He has planted me where I am, and visions of "Christian Grandeur" need to be set aside on pride's altar. That being said, my heart's desire is still to serve the Lord in whatever capacity He chooses. So, I prayed. And, I've continued to pray, more specifically in this season of being "home bound" for opportunities for ministry. Nine months in, and the majority of the ministry had been on my heart-the Lord revealing some parental ugliness that needed to be repented of and fixed. Although I kept praying for opportunities, I honestly thought that perhaps my season was one of quiet ministry to our family, and I was finally okay with that.
If you've walked through seasons of learning, you know what's coming next. God determined I had at least passed the current quiz, so it was time for some "new material." (Sorry, I'm in the back-to-school mode!) Facebook has plenty of negative issues, but one positive is that it can and does connect people to others with a need. Long story short-a request for a babysitter turned into two little girls a few days later entering our home to sleepover so their mom could work. What began on a trial basis quickly turned into a solid commitment from Richard and I, and a blossoming area for service we did not expect. I was quite careful to guard my heart. I did not want to get hurt when the girls were pulled away from our family. I knew their mom was throwing around the idea of adoption, and with five of our own-two in the midst of therapy-we knew there were plenty of other couples who would be so much better suited to love and care for the girls.
Almost four months into our babysitting agreement, I knew where I stood. I loved the girls, and would happily take them each night their mom worked. I was quietly confident the Lord had worked in my heart to be grateful for this small area of service. Growing up, I was very blessed to have an incredibly stable home. But, my mom did not have that same luxury. The story of her youth is so horrible, if you heard it, you would think she made it up. One of the things I remember most of her story was feeling like a pawn, the constant moving from one parent to another, and the fear of being split up from her two brothers. Because of my mom's insanely difficult background, she's never been one to display a lot of emotion. When she described the fear of losing her brothers, though, I saw in her eyes a reflection of deep pain that cut me to the core. (Back to the present...) I received a text from the girls' mom that her living situation was unexpectedly changing, and she might have to split up the two girls.
As the situation began to appear more and more dire, Richard's and my heart were united in a common purpose. Within the period of a few weeks, the decision for us to be "Trucks plus One" was made. The older little girl would move in with us, and (by God's awesome work!) would attend school with all of our kiddos. Richard and I have felt deep conviction that we would not ask for any type of "legal" agreement (we are not legal guardians or foster parents). Just this week, she moved in. We are very much in a transitional stage right now. This is so very far outside of my comfort zone, but I'm so very grateful. I'm watching the Lord grow our marriage, unite our family, and see Him provide grace sufficient for the day. As a confessed "Type A Planner", once again, He's reminding me I cannot worry about tomorrow, but need to trust for today. I'm (working on) finding freedom in His sovereignty and His grace. And, I'm watching Him allow a full circle take place. For today, the girls will not be split up. There is no such thing as "coincidences." Our situation today has been divinely orchestrated...beginning over a half-century ago! As my husband said, Ephesians 2:10 applies just as much today as it did when it was written, "For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them."
Thursday, July 23, 2015
Let's Give 'Em SomePLACE to Talk About...
Life inside the ABA fishbowl. A family who has finally made the waiver's. A family who is sacrificing a second mortgage to get their precious child desperately needed therapy. A family who has a child in intensive therapy typically has therapists in their home or alongside of their child for 25-35 hours per week. Some families (like ours) hit the jackpot and have two kiddos receiving services at the same time. Anywhere from 50-70 hours per week (some overlapping) of therapy.
Frankly, there is no place to go. There are so few people who are walking through this daily grind that have someone who truly understands. Add to that equation the fact that we cannot just go on a play date. If it isn't built into the programming, we cannot leave. If respite isn't available, we may not leave. Shackled to the home, loving our kiddos, and completely alone with a house full of people. (I'm not even kidding, we had SIX therapists today for a home visit....)
Before you stop reading thinking this is a "Woe is me" post, it is not. I cannot put into words how grateful I/we are for the therapy our boys are receiving. In fact, today during our home visit, we talked about some of the life-altering changes we have seen in just under a year. Changes I honestly never thought possible-a haircut without tears. You have no idea. It's amazing, a gift, a day-by-day blessing we get to experience. But, it's difficult. Like, way harder than I ever thought I could ever put up with. let alone handle. These hard-working therapists walk alongside me during my everything-my ugliest, my failures in parenting, in my marriage, even me without make up. They see my dirty bathroom, my dirty dishes, my unswept floor. They see dirty diapers, unvacuumed floors, dirty and/or unfolded laundry, and unmade beds. Some of you are now wondering what it is I do, and why I don't clean. They may not see all this in one setting, but they see where I am pitifully behind on all I need to do. And, I have to be okay with it. As long as I am out of the shower (and dressed), and the kids are not walking around naked, I have to be okay with whatever else they see. For a (desired) perfectionist, this has been a big, nasty, difficult pill to swallow.
In the autism community, there is a LOT of blaming. A lot. People are passionate about what they believe, and if you dare to think otherwise, you will be proven wrong with one medical study or another. But, there seems (at least to me!) to be very few places to go ("go" being a loose term for a virtual connection) to just be supported. To "reach out" and "touch" someone who is there to just say they understand. So, I decided to try and start that place. I have been told that if you bring a problem to the table without a solution, you are just adding to the problem. Not desiring to do that, here I go...
https://www.facebook.com/groups/1593403414253254/
Frankly, there is no place to go. There are so few people who are walking through this daily grind that have someone who truly understands. Add to that equation the fact that we cannot just go on a play date. If it isn't built into the programming, we cannot leave. If respite isn't available, we may not leave. Shackled to the home, loving our kiddos, and completely alone with a house full of people. (I'm not even kidding, we had SIX therapists today for a home visit....)
Before you stop reading thinking this is a "Woe is me" post, it is not. I cannot put into words how grateful I/we are for the therapy our boys are receiving. In fact, today during our home visit, we talked about some of the life-altering changes we have seen in just under a year. Changes I honestly never thought possible-a haircut without tears. You have no idea. It's amazing, a gift, a day-by-day blessing we get to experience. But, it's difficult. Like, way harder than I ever thought I could ever put up with. let alone handle. These hard-working therapists walk alongside me during my everything-my ugliest, my failures in parenting, in my marriage, even me without make up. They see my dirty bathroom, my dirty dishes, my unswept floor. They see dirty diapers, unvacuumed floors, dirty and/or unfolded laundry, and unmade beds. Some of you are now wondering what it is I do, and why I don't clean. They may not see all this in one setting, but they see where I am pitifully behind on all I need to do. And, I have to be okay with it. As long as I am out of the shower (and dressed), and the kids are not walking around naked, I have to be okay with whatever else they see. For a (desired) perfectionist, this has been a big, nasty, difficult pill to swallow.
In the autism community, there is a LOT of blaming. A lot. People are passionate about what they believe, and if you dare to think otherwise, you will be proven wrong with one medical study or another. But, there seems (at least to me!) to be very few places to go ("go" being a loose term for a virtual connection) to just be supported. To "reach out" and "touch" someone who is there to just say they understand. So, I decided to try and start that place. I have been told that if you bring a problem to the table without a solution, you are just adding to the problem. Not desiring to do that, here I go...
https://www.facebook.com/groups/1593403414253254/
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