I remember sleeping in past 5am. I remember friends calling on a Friday night. I remember date night with my husband. I remember Sunday after church dinner in an actual restaurant. I remember people offering to babysit. I remember friends just wanting to come over and hang out.
Things before autism were so carefree. I did not know what an IEP was or what ABA stood for. My days were not booked with OT appointments or Music Therapy. I did not have to fight for equal education. I did not worry if other children or adults would pick on you.
But you see my sweet beautiful boy, if it were not for autism I would not have YOU.
You are my heart and soul. You make my days bright. Your laugh can light up a room like no other. You have no fear. You love planes, trains, and the pool. You love to draw pictures and play on your tablet. You are trying so hard to play with your brothers and sisters.
Yes we have days (sometimes weeks) were things are hard. Really. Hard. And in our world we just take those days one at a time. We go to bed, sleep on it, pray for a better day tomorrow and start all over in the morning.
We are working on behaviors and unlearning some not so good words that you picked up in school last year. But we can’t sweat the small stuff. (Hopefully you will not say them in front of the pastor.). Life with autism is anything but boring.
Before you my sweet boy I was scared of autism. I didn’t understand it. I didn’t know anyone with it. Our lives have changed in many ways. Our circle of friends has gotten much smaller. We order our groceries online to avoid the crowds. We do at home vacations instead of going away now. But I would not change a thing. Autism has been a blessing to me, because it gave me a son like you.
When I think of Living Wills I think in the future. I see myself at 80 or 90. I’m older, my kids are grown, my life feels complete. Never once did I see myself at 42 with my little loves surrounding me hoping that an ambulance or someone would get to me in time.
But that’s where I found myself on March 29th. Home alone with my five little ones… having a stroke with no one around.
The kids had been at my parents for a few days for spring break. I had picked them up earlier that day and now we were relaxing at the house. My three year old asked if we could exercise while my eight year old rolled her eyes and the boys played. I looked at the clock and figured I had time for some push-ups and a shower before I had to start dinner.
We were both acting silly and giggling, working out with her is so much fun. At the start of our third series I became real dizzy and extremely hot. I laid my head down to catch my breath while little miss continued to dance away. She laid her hands on me and asked mommy you ok? I tired to get up but I could not. My five year old son ran in screaming he wanted popcorn. It took everything in me to pull myself and walk into the kitchen. I tried several times to type in two minutes for the popcorn and could only get numbers like 55 or 33. I knew that was not correct but I knew I could listen until the popcorn stopped popping and get it out. I made four small bowls and told the kids to come. When I went to walk into the living room everything went dark. I was yelling for my kids to come but I could only get out “Sierra” over and over. After a few minutes my eight year old came out saying “Mom Sissy is NOT here stop yelling for her!” I placed my hands on her shoulders and tried to explain I needed help but all I could get out was “Sierra Sierra” By the look on her face she knew something was wrong. She looked for Sissy in my phone but could not find her but she did find her dad. I hit the auto dial and heard him answer, I tried to talk but it was broken. He knew something was wrong and called the ambulance and raced home.
Time stood still. My kids, two of whom have autism, were running around unaware of how bad mom really was.
The ambulance pulled in and the kids flipped out. The Lights.The sirens. To much stimulation for my little ones. They come in and I tried to get them to shut the door but no one understand me. My son was running towards the door, if he got out he would be gone. The paramedic saw me getting upset and asked what could she do I pointed at my son by the door and my five year old and with every ounce in me I managed to get out “both autistic” Her eyes locked on mine and she understood without me saying anything else. She got wild mans attention and closed the door.
I could hear the kids crying and asking where’s mommy going questions but my mind could not focus on anything. I was rushed out the door to the waiting ambulance. The EMT’s assured me that they would watch the kids until my husband or parents could get to the house.
The ride to the hospital was a blur. I remember opening my eyes and hearing them ask my husband a list of questions. He was holding my hand and he looked terrified. They turned to me and seeing the look on his face I told them to save me.
I could not feel my left side. The hours turned into days. My memory for the last six months is simply gone.
But by God’s grace I survived.
With therapy I have regained the use of my leg. My voice is becoming stronger and clearer each day. Ironically the spinal cord stimulator that works my left arm, thanks to a car accident in 2000, that tells my nerves to “work” continued to tell my nerves to “work” even though my brain was telling them no shutdown.
I don’t recall much about those days in the hospital. But I do know God placed me in the right hospital to get me to the right rehab center where I was blessed with amazing physical therapist and speech therapist. Those ladies and the other patients I met while there saved me.
I may never be the person I was before my stroke. I may never fully recover my memories or have the answer to why this happened to me. Heck it’s taken me a month to type this short post, I’ve missed writing and you guys. But I do know I am still here. I survived. With each day I will get stronger. My kids still need their momma and I still have a lot of love to give.
And that my friends is something worth celebrating.
Celebrate the small victories, those are the ones that happen every day ❤️
This make photo may look like a typical second grader heading off to another day at school. However, to those that know our little man this, is so much more.
When he was two and a half our little guy stopped eating meat. A few years ago he went from wearing shorts and T-shirts to long sleeve flannel. It could be 90 degrees outside and he would wear his magic pajamas outside. If autism as taught us anything it’s to be patient and to except what we don’t understand.
His magic pajamas are his safe place. He knows when he is home (or traveling in the car) he can be himself and no one will judge. We have received several rude comments and have seen the stares as we travelled when we stop at rest areas or restaurants and my adorable son would climb out of the van in all of his flannel. I can handle those that judge, my top priority is his happiness and wellbeing. Yes I worried about him become to hot, I’m his mom it’s my job. Imagine my surprise when he decided today he wanted to wear shorts to school.
As he was eating breakfast this morning he looked over at the TV. The weather man was talking about the heatwave and mentioned that today’s high would be 95. As he took a bite of his Cheerios he looked up at me and said, “momma that Man says it’s hot. Me need to wear short pants today.” I looked at him and said it was going to be very hot and that I thought shorts would be a great idea. It’s been three years since he wore shorts. Three. Years. Did I even have shorts that would fit him? Could his swimming trucks pass as shorts? No then he would think he was going swimming, can’t do that.
I ran through the house frantically looking for a pair of shorts that may fit before he changed his mind. With today’s high, shorts would be much more comfortable than his jeans. After trying on three pair we found a pair that he said would work, blue light weight basketball shorts. (Perfect, mental note to self go buy more shorts like this in a variety of colors). He even wore a T-shirt instead of his button up dress shirt. Today was a huge day of change for him. Today I will not worry if he is getting to hot on the playground. He prefers to wear button down dress shirts with jeans to school. He calls this his school gear.
I am sure when he returns homes this afternoon he will come in and the shorts will come off and his magic pajamas will go on. And that’s perfectly fine. We have learned to celebrate the small victories. And today was a victory. The thought that he understood it was going to be really hot today and wanted to wear shorts is huge. Who knew a simple pair a shorts could make me so happy. Here’s to small victories, Momma tears, and blue shorts.
It is hard to believe that you’re 24 today. Where do time go? How did it happen?
From the moment I knew about you I knew what my purpose on this earth was. Was I scared? Yes. Very much so, I was young, only 18, and God had in trusted me with the job of being Your Mom. Not just anyone’s mom, yours, how could I say no? But still the questions were there: What in the world was I to do? What if I was a bad mom? What if you did not like me? All the what if’s flooded my mind. And then you arrived and all my worries stopped.
At 12:49 in the afternoon you made your grand entrance. All 8 pounds and 13 ounces of you. You by far, and yes I may be a little biased, were the prettiest little girl I had ever seen. You were mine and know matter what this world would throw our way my job was to protect you. Above all I was to love you like I had never loved another. I had a propose, I had you. My beautiful little one.
As the days turned to years we had our share (I know it is shocking to many lol) of ups and downs. We had our good moments and our not so great moments, but even in those not so great I hope you know I was doing what I thought was best for you.
Because of you, I was given the strength to get out of an abusive marriage. You saw something in me that was worth fighting for. You had seen the struggle and convinced me to get out. Thank you for believing in me when I did not fully believe in myself.
Now ten years later daddy T and I could not be any more proud of you. I can’t believe we are so happy and have so much joy in our lives. Who would have thought that after so much darkness there could be so much light? I know I didn’t see five little loves joining our forever family. Did you? So thankful God believes in second chances at love and happiness.
And soon will come September and God will bless you with your own special little guy. The love you two will share will be magical I am sure. I can’t wait to see you as a mom. I know that you will be fantastic, God had big plans for you. I look forward to seeing you grow into mom life, to hold your hand when you think you have failed ( but trust me you will do great ), to wipe a way your tears and to let you know how special you are. We have come so far and I am thankful God has given me to gift of being a Lolly aka grandma. I look forward to seeing where this adventure takes us.
Can you believe it’s 2019?! Where in the world did 2018 go? I guess the Gretchen Rubin saying is true, The days are long but the years are short.
As we settled in for a night of movies, popcorn, pepperoni rolls, and giggles with the littles I could not help but look back at what the past year looked like for our family. What a difference one year makes.
Last January we were in Tennessee. We were fostering a beautiful little girl. She fit in perfectly with our little loves. That was actually her second time with us. Man I miss her sweet smile, the sounds she made while she slept, and the way she took in everything around her. I am happy she is now with family members that can care for her the way she needs to be. For a moment we thought she was meant to be ours, God had other plans for her and for us. So we will continue to pray for her, her parents, and those taking care of her. Baby Peaches will forever be in our hearts.
In March she went to live with her grandmother, and our lives went back to our normal. The kids were doing well in school. My husband was busy at work. All in all things seemed to going well. I became a published author in March. Beautiful Chaos Our Story about Foster Care, Adoption, Faith and Lovehit Amazon (and some bookshelves) on March 14. I never thought it would happen, but it did. It finally did. Some dreams are meant to be reality. In March my mom and I were able to attend a Women of Joy conference. Powerful messages and wonderful worship filled three amazing days. While there I had the pleasure of meeting Lisa Harper in person. Her testimony is so touching. Her books are amazing. Being able to give her a copy of my book and get a copy of her book was amazing.
In April we welcomed a very tiny sick little boy into our home. It was just for a week until his grandmother could get things in order at her house so she could care for him at her home. It just happened to be the week of Easter. What a perfect week to have him with us. He was able to attend one of the most memorable Easter services I have ever been to. He was prayed for and prayed over by our pastor and his wife. And even though he was only with us a week he too will have a place in our hearts. Its not about the amount of time we spend with someone, its about what we share in that time that matters.
May brought about a trip with my oldest daughter and my momma. The previous Christmas Sierra and I surprised my mom with a tickets as one of her presents. My mom, recently retired, had always wanted to take a cruise but was never able to go. My dad does not care for the ocean so Sierra and I decided we would take her and make it a girls only trip. We had a blast. Seeing my mom so happy and excited was truly one of the highlights of my year. Maybe we can make it a yearly thing? Maybe.
May also changed things. My father in law was not doing well. I’ve said it before and I will say it again cancer sucks. He was fighting a losing battle and time with him we knew was growing short. My husband and I started talking about moving back home but it was not as simply as “just moving home”. The thought of taking JR out of his school scared us. I knew our other little loves would adjust fine, but him, we worried about him. His needs are much different than theirs. We prayed and talked and talked some more trying to figure out what was best for all of us.
June we received a call for a little girl and welcomed her into our home. She was a bundle of joy. Always laughing and by far the best sleeper we had in a long time. Our little loves loved having her with us.
I was not feeling the best and after talking with my doctor I was scheduled for a hysterectomy in mid June. During the pretesting the doctor discovered something wrong. It appeared that I had had a mild heart attack. I was floored. I’m only 42. The doctor had more tests ran and it was later determined that it was not a heart attack just a heart issue (still not completely sure what happened or what the issue actually was.) But truly thankful whatever it was God saw fit to fix it. Thank you Jesus!
With my health scare and Todd’s dad sick we made the decision to move back home. We needed to be closer to our families. I brought the kids up and they spent most of the summer at my parents home. I would travel back and forth between to two states. We still had our foster daughter and she had visits and meetings we could not miss. When we knew for sure we would be moving (still in the middle of all my testing on my heart) we discussed her case with her caseworker, her GAL (guardian at litem) and her mom. The decision was made that she would be placed in another foster home where she could continue to thrive while her mom worked her plan to get her back. It was with a heavy heart we had to let her go. The day I dropped her off to her new foster family was hard. We did not plan for her stay with us to end like it did. Last I heard she is doing great and her mom is working hard on things to one day have her back. I pray all works out.
August arrived before we knew it and we closed on our new house, the day before school started. Talk about crazy timing. Todd was still working in TN, traveling back and forth to see us and his dad. School brought about new schools, new teachers, new everything for our kids. It was a difficult time but thankfully everyone is adjusting well now.
October we celebrated Halloween. We had the Ghostbusters along with the Marshmallow man and the cutest little Dale Jr I’ve ever seen. That would be the last time the kids and I would see my father-in-law. It is still so hard to believe he is gone. I am thankful for the memories he gave to my kids, to me. He was truly an special man.
November is a blur. That’s when our world changed forever. When Jesus called him home. He fought a hard fight. We went through the motions at Thanksgiving. I cooked. I wanted my mother in law’s Thanksgiving to go as smoothly as possible. My orders from my seven year old were to make sure she was happy. JR knows she misses him for he too misses his papaw. They were inseparable. Not a day has went by he has not asked about him or how he can get to him.
December my husband was able to finally move home. After our TN house sold and things at his work slowed down he was able to transfer back up here. Having him home has been the best gift. We are once again under one roof. We are stronger when we are all together. Christmas was a busy time, with our five little loves and our daughter and her boyfriend, and our son and his girlfriend, our house was filled with laughter and presents. Lots of presents. There were laughs and some tears, but over all we had an okay Christmas. We missed papaw’s laugh and smile, I guess that’s something we always will.
2018 brought about many changes for us. Life is about change. We must learn to live life and love the people we are surrounded by. We must forgive others and forgive ourselves. We must be patient with what’s going on and see where God leads us. In 2018 we made some new friends (stopped talking to a few). We discovered we are stronger than we realized and our faith grew. Our hearts were broken and tears we shed many times, but through it all we had each other. I am not sure what 2019 will hold for us. And that is the beauty of change. My prayer is that whatever life throws at us in the new year we learn from it, we grow from it, we are blessed by it, and we embrace it. Through it all may God keep us and guide us all the way.
From our beautiful chaos to yours, May 2019 be a very blessed and exciting year.
So with the okay from my mother-in-law, let me tell you about a boy and his best friend, my son and his papaw.
Losing someone you love is hard at any age. Its hard to wrap our minds around the idea that our loved one is not here physically anymore. It’s hard on adults to process the loss, so just imagine you are seven and autistic.
I was blessed to have my father-in-law in my life for over eleven years. He was one of those guys that loved to help everyone. I swear he never met a stranger. If he had it and you needed it, well then it was yours. His smile was infectious and that laugh, oh how I miss that deep belly laugh. I did not know him as long as most, but in my time with him I discovered how much and how deeply he loved people. And you know what else? He loved being a papaw.
When my husband and I got married, my in-laws became instant grandparents to my two preteen children. When my husband and I decided to become foster parents, they were on board with the idea and were excited for the journey that awaited us all. And from the moment our wild man was placed with us, all of our worlds changed. From the second he came to us, so tiny and so sick, I knew he was ours. And on a cool day in September 2013, two and a half years after wild man was first placed in my arms, papaw Jim(along with our whole family) was in the courtroom with us as JR became forever ours. JR had us all wrapped around his little finger from the beginning. But the two of them had a special bond. They were inseparable.
JR went everywhere with papaw. Whether it was to the grocery store or down to the wrecker (tow truck) shop, it didn’t matter to them. He was so excited when papaw bought him his own car seat for his truck. JR loves that truck, and he loved going bye-bye with his favorite person. My father-in-law never saw our JR as a child with autism, to him he was just his grandson. His beautiful, full of energy, always laughing, popcorn eating, adventure seeking grandson.
After the “twins” arrived to our home, my father-in-law offered to start taking JR to his OT, speech, and music therapy appointments on Fridays. It quickly became their thing. My in-laws would pick him up shortly after I got our daughter on the bus and off they would go on their weekly adventure. He loved spending his Fridays with them. My father-in-law also filled in for us at his preschool when they would have special days or field trips that my husband or I could not go to. He always found a way to make sure JR was included in everything at the school. He became more than just JR’s papaw, he was the classroom’s papaw.
In my son’s words, Cancer sucks ass. And he is 100% correct, cancer does suck ass.
My father-in-law was the healthiest sick man I have ever known. He never complained or questioned why him, at least not in front of us. He always had a smile on his face when he was around the kids. They never seen him as sick. Hearing the words, he has cancer, took months for all of us to process. How could he get sick? He was our rock. The doctor’s had to be wrong. He was a fighter. He did everything he could to stay strong and beat the hand that laid before him. As the days turned into months and he became weaker we tried to prepare ourselves and the kids. We explained things to our little loves in a way that we hoped they would understand, but how can we expect them to understand when we don’t fully understand ourselves?
Halloween night, I called to see if he was up for some trick or treat visitors. I drove my twelve passenger van through the sea of candy hungry neighborhood children so that our kiddos could get to papaw and mamaw’s house. Papaw made his way out to the porch and stood while holding the back of a chair. He made sure to tell all the kids he loved them and made sure they all got more candy than they needed. JR asked if he could go get a prize out of the treasure box and of course he was gone before anyone could say yes. We visited for a few minutes and gave hugs goodbye and off we went. When we got back into the van the first words out of JRs mouth were, momma papaw must be getting better. He was standing tonight. I will forever be thankful for this last memory he gave to our kids. I know it took everything out of him to come out and stand and pass out candy. But he did it for them. And he did so with his signature smile on his face.
JR did not just lose his papaw. He lost his best friend.
There has not been a day that papaw Jim is not mentioned at least a thousand times by our sweet boy. JR can not process what has happened. He is fixated on the why’s and how comes. He is lost without his number one fan. He loves for us to tell him things the two of them done, and he always has a few of his own stories to share. He sleeps with the flashlight he got out of the treasure box on Halloween night. And he talks to papaw’s picture he had me hang in his room. He asks if we can make an airplane and take a trip to heaven and he is full of questions about cancer and death. Some days he is happy, knowing he will see papaw again other days he cry’s non stop for he misses him more than anything.
The two of them shared a love of the ocean, swimming, and eating cheese flavored popcorn. They loved “fixing” things and taking drives. There will always be a great big place in JRs heart for his papaw Jim. And because of JRs unique look on life I know for a fact papaw Jim will live on through him and us. He may not physically be here with us but his spirit is strong, especially around our wild man. I know when JR is in his room and I ask, who are you talking to? And he replies papaw Jim, I know that he really is. Thank you for looking in on him. Life will be hard without him but you can bet JR will remind us of something the two of them did that will bring a smile to our faces daily. Their relationship will live on through the memories they made.
So thankful for the memories, precious, precious memories. In JRs words, Heaven is an extra special place now with papaw Jim in it. Yes it is little buddy. Yes it is.
Have you ever wanted to run to the top of a mountain and just scream? I’m talking the type of scream that has hot tears running down your face, your whole body shakes, sweat pouring off of you and it solves absolutely nothing but you continue to scream anyway type of scream because no one can hear you. The type of scream that makes you feel better for just a split second but you know the pain that will follow in your throat for days to come. The type of scream you scream where no one else can hear your sadness, your isolation, your frustration, your pain. The life as an autism mom has these days, today in fact was one of those days.
I’m getting ahead of myself, let’s back up.
Like most families we have our days. We have days that are good, days that are okay, a few great days that give us the strength to continue forward and then those days were I feel like a complete failure. Meltdown after meltdown. Nothing. Going. Right. Days. These days drain everything ounce out of me. This day started around 4am this morning.
I knew when we went to bed it was going to be a long night. I saw the signs.
I had to tell him daddy was on call this weekend so he would not be in to see them. Big Sis had told him she had plans to go to a football game so he would not see her for a few hours. My other little loves were excited for the weekend and the noise level in the house showed it. He paced the floors in a circle around the couch. He held his stomach as he does when he “needs to go” I check his calendar, it’s been four days, he will probably go this evening. I make a mental note to take extra pull-ups and wipes to bed with me. By nine all the kids are sleeping, even him, but he is not resting. He tosses and turns in his bed. I hear him groan as he sleeps and I know his belly hurts. I drift in and out of sleep because I know he will need me soon. Around midnight he yells and I run to his aid. He can’t sleep know, he is wide awake, I make his pullout bed in my room so he can feel safe. He finally drifts off to sleep around two and I can finally close my eyes.
Then it happens. 4am comes with screams of complete terror. I jump up but can’t see a thing. Complete. Darkness. I am frozen for a split second until my ears lock on his scream. Power outage. I’m not prepared. All I have is the flashlight on my phone. Why oh why did I not unpack the candles? He makes his way to me he is now wide awake once more no sleep for us now. With every noise, every sound he hears and his mind wonders. By five two more of my little loves join us in my dark bedroom. They are also scared. I must be brave even though my heart is racing. Finally around seven the sun begins to break through the clouds. The scary night is over, a new day can begin.
But his routine has been changed. Nothing will be easy today. I try my best to make it work but it does not. Daddy is suppose to be here today. He is not and our wild man does not understand. Things spiral. Lack of sleep is not helping the situation. We load up and drive to my parents. He is happy to see them, but notes that he sees them on Sundays not Saturdays. He writes me a note letting me know he loves me, hard days are less hard when he gives me notes like these. A few hours at their house was helpful, maybe the rest of the day will be better. Cue meltdown number three.
Car ride home. Sister singing. Brothers laughing. Sister yelling for brothers to stop. Noise all around. I ask them to calm down, I fear it’s to late. To much for him to handle. So it starts.
Hitting. Kicking. Screaming. His body takes over. I get us home. I try to hold him, try to contain the storm within him, but he is not a small two year old anymore he is a 65 pound seven year old that is stronger than an ox. I really wish my husband were here. A few hours, yes hours, pass and the storm is once again my sweet loveable little man. He says things like, I sorry momma, I will not bite myself again momma. Momma today a bad day. He cries. I cry. I pray for rest tonight but can see it will be another long night. Days like these are hard.
I try to be honest about how life is. I try to let those that want to know how things are going, how things are actually going. But no one really understands what it’s like to have a child with autism unless they have a child with autism. I try to make things as normal as possible around here, whatever that is, but there are days I feel so isolated. There are days I feel like all I do is scream both figuratively and literally. There are days I wish I could get in his mind and figure out the why’s and why not’s. People say we are lucky because he can talk now, and we are blessed he has found his voice. But that does not make his autism less hard. It’s hard. So hard.
I look over at him. He is finally fast asleep in his pullout bed right beside my bed. He is at peace. He feels safe and that’s what’s most important to me at this point. I set here on the top of my mountain screaming inside knowing no one hears me. I pull on my invisible super mom cape so that people see what they want to see, so they don’t feel obligated to pretend to understand or worse give me advice on what I should do when he acts out. Tonight as I look at him and know we made it through a hard day we pray for strength to get through future hard days. We pray for a better days. An easier day. I pray I can be the mom he needs me to be. And I give God thanks for making me his mom. God knew we needed each other on days like this. Tomorrow is a new day.