Cherish Them.

"If there is anything you want to do with Handsome, do it now. Don't waste a second of his life. Hold him. Love him. Do everything you want to do with him while you can, because I don't think he has long left. And I don't want to see you come through those emergency room doors a month from now and when I have to tell you there is nothing else we can do, I don't want you to look at me and say you thought you had more time. I don't want you to tell me you wish you had held more or told him you loved him more often. I really don't want to mislead you into thinking you have time, because you might not." 

That was one of the last conversations I had with Handsome's doctor before he was discharged. I think about those words often. When I write a blog, for instance, I used to lay Handsome in his swing and Doc in his pack n' play and I'd blog while the big kids played in their room or were gone to school. But now, when I sit down to type up a blog the warning from Handsome's neurologist plays in my head and I get up, pick Handsome up from his swing and I hold him a little bit longer then I did the day before. 

At night, we all like to curl up in mommy's bed and read a book. Skywalker and Heidi take turns trying to sound out the words, while LB, Handsome, and Doc lay and listen. I use to rush this night time tradition. I'd pick a small Dr. Seuss book knowing that we could read it quickly and then head to our own beds for sleep, but now, when we pick a book we pick the biggest chapter book on the shelf. (that is appropriate for children, of course) 

I have doubled the amount of times I hug my kids each day. I have tripled the amount of I love yous I say to them. And I am finding way more time to spend with them. Time that I thought before I did not have. I needed to clean, plan meals, cook, clean some more, do laundry.... I always had an excuse, but I have since learned that the laundry can wait. The house doesn't need to be immaculate all day, every day. I have learned that the time I have spent trying to keep up appearances and trying to be perfect, is time much better spent playing with my kids. 

All of my kids. Not just Handsome. He may be the one with the impossibly heart breaking prognosis, but if I learned anything for the last two years, it's that nothing in life is guaranteed. We aren't guaranteed a healthy pregnancy, a smooth delivery, a child without flaws. We aren't guaranteed a lifetime with our children. I think that's something, we need to be reminded sometimes. No matter how little, how young, how healthy or how sick, someone can be gone tomorrow. 

After reading so much about Handsome's story, I hope you all take a step back and think about how it could be you in my shoes. It could be your child. 

If you never learn anything else from my blog, if my craft tutorials or cleaning tips are nothing new to you, if my journeys through fitness and organization don't teach you anything, if you get nothing else out of this website, I want my son's story to at least make you appreciate your children a little bit more. I hope after hearing about Handsome and his struggles, that you go home from work and hug your kids tighter. I hope that you spend five extra minutes a day reading to them. And I hope that you tell them you love them one more time then you did yesterday. Because tomorrow, you may not have the option anymore. You shouldn't need a poor prognosis and a terminal illness to appreciate your children, to want to be with them, cherish them, and love them as much as you possibly can. 

my bulldog.

I grew up in a small town somewhere in south west Georgia. Somewhere that was filled with miles of crops, lightning bugs, and big oak trees. I grew up in a town where everyone knew my name and everyone knew my business. I loved the town I grew up in from the mayhaw jelly to the nosey neighbors, but the best thing about where I come from is the Friday night football. 

I always joke that they put something in the water down there in good ole Georgia that makes the natives crazy for football. I must have drank a lot of that water growing up, because even though it's been over ten years since I left my hometown, I'm still a bit fanatic over Georgia football. I still had hopes and dreams that my boys would travel down to the University of Georgia with full ride football scholarships. And I pictured the day that all four of my male rugrats came home for Thanksgiving sporting their red and black jerseys. 

That was one of the dreams that were crushed the day I saw Handsome's MRI scan. One of the pictures in my head that slowly turned to black and white. A team of doctors shattered those images on that June day when they told me my son had brain atrophy. I cried for days, this whole past month even, coming to terms with the fact that I'd never see my third son play high school football. I'd never see him graduate. He'd never take a fall trip to Athens, Georgia and he'd never wear UGA colors....

WAIT! 

HOLD UP! 

REWIND!

No one said Handsome would never wear UGA colors. They told me he was sick. They told me he didn't have a long life expectancy. They said he'd never walk. But no one said my baby boy couldn't be the toughest Bulldog Sanford Stadium ever seen. 

My dreams for Handsome may need a few alterations, but they can definitely still come true... 

my son's baptism

I am a Christian. I was brought up in the south by good ole baptist folk. My religion and my relationship with God are very important parts of who I am, so when doctor's told me that my son was sick... very sick. I knew there was one more thing he needed besides medicine and extra care. I knew that he needed to be baptized.

During this stay at the hospital, we have gotten very close to a hospital chaplain. When she visited me last week we mentioned baptizing Handsome and not only did she agree, but she said she would be honored! So on Monday July 23rd, (a month and one day since we received his prognosis) in his intensive care room, my husband, my daughter's teacher, the hospital chaplain and I gathered around his crib and we read a verse from Matthew. We prayed. And we baptized our son.

Bored Bucket

Growing up, I cannot tell you how many times I said the words "I'm bored." My mom used to say that she hated hearing a child say those words and I never understood where she was coming from until recently...

 We had planned on making a summer bucket list, with a list of things we wanted to accomplish this summer. Once we made out our list, I realized that doing it all was not going to be possible with Handsome having a surgery in June and his string of follow up appointments. 

So I took to pinterest for another idea... And I stumbled upon a bored jar. A decorated jar that was full of pieces of paper with things to do, printed on them. The idea was that anytime the child said they were bored, they could pull a piece of paper out of the jar and whatever task was written on there, they would have to do. Somethings in the jar were fun activities, while some were... not so fun, like chores. 

Shaydes of Life is the blog where I got the idea from, if you wanna check out her blog! 

After reading her blog, I decided to make a bored bucket using scrapbook paper and an old grits container, but instead of filling it with small activities, we filled it with the items from our summer bucket list. I knew we couldn't accomplish it all in one summer, but narrowing it down just didn't seem as fun. This way whenever we get a free day, we can just pull something out of our bucket. It adds some mystery to our summer activities! 

I wrote our activities on popsicle sticks, because I was too lazy to type up and print our list. :( 

When Reality Sank In

When something traumatic happens, I guess they say people go through stages of grief. Denial. Guilt. Anger. Depression. Up-Ward Turn. Reconstruction. Acceptance. I never really thought of Handsome's hospital stay as a traumatic event. People go through worse everyday. My baby was sick in the hospital, but I had a friend, who at the same time, was dealing with the tragic death of her child. She was going through a traumatic event. In my mind, I wasn't. I was just doing what needed to be done. I was just taking, what was being put in front of me, day by day. It took months for it to really sink in.
 "... intractable epilepsy" "Generalized tonic-clonic seizures!" "a lifelong treatment... special diets... compounded medicine" "... has developmental delays." "EEG. MRI. Home health care." 
 My baby boy was nearly two months old, and I was getting ready to take him home from the hospital for the first time, but instead of listening to a discharge nurse briefing me in newborn care, I was listening to a neurology team going over what to expect over the next few months with an epileptic baby. I was listening to a physical therapist, telling me how to do exercises to help my developmentally delayed baby progress. I, also, had a nurse teaching me how to insert an NG tube and how to clean it and use it... Through all of it, I held it together. I took it all in, but I wasn't processing it. It was like my brain picked up on the how tos with taking care of Handsome, but it wasn't letting me process the whys. 
 We had an hour long drive from the hospital to our home. I was alone, except for the sleeping baby in the backseat. The radio wasn't on, because I didn't want to disturb him. You would think, an hour alone in a quiet vehicle, that reality would have sank in, but it didn't. I kept my mind busy, going over and over in my head the correct dose of his medicine, what to do if he has a seizure, making sure I had the doctor's number memorized. 
 I went to all his appointments, his therapy, kept up on all his medications, tracked his weight... When he had a seizure, I'd get the dystat and time it. I kept a notebook, where I wrote down every seizure he had and how long it lasted, what he was doing when the seizure started, what the seizure looked like and what he did when it ended. I could say it out loud, "My son has epilepsy." I could talk for hours about his epilepsy, about his delays, BUT still I hadn't let it sink in. I still kept telling myself, it's okay. I'd even get mad when someone else told me my son was "different." He wasn't "different" to me. I had convinced myself that all these things we were having to do was normal. There was nothing more difficult to our life with our special needs son, then our life before we had a special needs son and our family was just like everyone else's. 
 Then one night, his seizures looked different then usual and he just wasn't acting right. I wanted a doctor to give me their opinion, but the doctor was already out of the office for the day, so I opted for taking him to the ER. It was a good thing I did, because 30 minutes after we got there, he had his first prolonged seizure. He stopped breathing and had to be intubated. After an hour and 16 minutes, they couldn't stop the seizure so they put him in a medicated coma. I watched my nine month old baby boy's body go from jerking all over to completely still and lifeless. And I felt the weight of the world fall on me, knocking me to my knees. Everything just hit me. My baby wasn't just sick, like I kept telling myself. My baby wasn't going to be better in a couple days, if I just kept up on his medications. I cried there on the floor of the emergency room, while doctor's stuck tubes down my baby's throat, in his knees, his forehead... Other people in the emergency room came over to where we were and held my hand, prayed with me, and offered a shoulder to cry on. For nine months, I had held it together. I had been strong for Handsome. I had told myself everyday, he was just sick, if I did everything the doctor's said to do, he'd be okay. But that night, I couldn't lie to myself anymore. I couldn't pretend that he would be okay. 
 It took me nine months to get past the first stage of grief. And yes, I then went through the anger, guilt, depression stages. And I've been watching my husband go through them, as well. I think he struggled a lot more in the guilt stage, because he was deployed and I think not being there for Handsome... and me, bothered him, a lot. But we are both getting to a point, where we can accept it. We may cry a lot more and doctor's appointments are a lot harder, but we get through it, because we have to it. People ask me daily, how do I deal with it? And I just do. There's no real answer to that question. Yes, I cry. I even lose it sometimes, but after I cry, I wipe my tears and let the doctor finish saying what they were saying. Then we try to make the best choices we can for him. 

It's not hard being Handsome's mom. Taking care of him is NOT the hard part, in fact it comes naturally. It's the knowing your child isn't well and you can't do anything for them that hurts. As his parent, I feel like it's my job to protect him and knowing that I can't protect him from epilepsy, kills me.

Kicking Epilepsy's Butt

Five different neurologists reviewed Handsome's case and told us, we would never be able to say "seizure free." In fact, on October 21st the chief of staff of neurology at our children's hospital, walked into our room, threw his hands above his head and said, "I don't know what to do." He continued to tell me that my son would never go a day without having seizures. He said he was certain that Handsome would require a lifetime treatment for epilepsy and to expect him to go a day without a seizure is just expecting too much. 3-4 seizures a day is a more likely goal...

Well, October 20th was his last seizure. That's right! We are four months seizure free. We are kicking epilepsy's butt!

In October, they switched one of Handsome's medications and in November, we started him on the ketogenic diet. I think both those decisions have helped us reach our seizure free status, but I KNOW they aren't working alone. I KNOW without our family and friends and our faith in God, we would not be sitting in our living room today. We would probably be sitting in the hospital room in Nashville, TN, where we spent almost all our time, prior to October.

Our friends, the people who have prayed for us day after day, I strongly believe, that you are HUGE factors in our son's miraculous turn for the better. So thank you! From the bottom of our hearts, THANK YOU!

Now that we have his seizure's under control, we can begin focusing on Handsome's other health problems, like his developmental delays and his low weight. We still have a long road ahead of us, but it doesn't look so dark anymore.

Things You SHOULDN'T Say To The Parent Of A Special Needs Child

I've never been a shy person. I don't have secrets and my life is an open book. I air my dirty laundry in public and usually, I have no problem answering any personal question someone might want to ask. It's hard to offend me and I welcome criticism, so the fact that I felt the need to write a blog post like the one I am about to write might surprise some people.

But in the last year, I have been stopped in doctor's offices, stores, and restaurants by strangers who were curious about Handsome. And some of the things they've said or asked were just... not something I felt comfortable with.

1.) "What is that thing coming out of that baby's nose?
Disabled people have a lot of different equipment that they need and one thing Handsome has needed in the past was an NG tube. It was stuck down his nose into his stomach and it is how he was fed for the first 3 months of his life. While I do not mind answering the question, I do mind how it's asked. We were in a doctor's office waiting room one day when an older woman commented on how cute my baby was and then when she got close enough to see his feeding tube, she gasped before asking what it was.

2.) "Hey, why is your kid shaking like that? WTF is wrong with him?"
One of my husband's closest friends had been staying at our house for a while and happened to witnessed Handsome having a seizure. My husband's friend stared at Handsome in awe as he asked "WTF is wrong with him?" I understand if you've never seen a baby seize before you may not know what to expect, but he could have asked us in a less offensive way.

3.)"I feel so bad for you." Oh how I hate when people pity me, because my son is sick. I get that they are trying to be nice and sympathetic, but don't feel bad for me. Feel bad for my child. I'm healthy. I have a ton of things to be grateful for. I have a normal life. He's the one who suffers. He's the one it's hard on.

4.)"Well, my one year old is walking."
Watching our friends' children who are the same age or younger learning to walk, talk, and feed themselves is already difficult for us. We know our son is developmentally delayed, but it's still not easy to have people tell us "well my child is doing this and that." And its especially hard to have a stranger ask us how old he is and then start telling us how far behind their child he is.

5.)"My cousin has seizures and s/he is normal. Your son will be, too."
People ALWAYS try to tell us what is wrong with Handsome and how to treat it. We have people constantly telling us how we need to try this medicine because its what their such and such is on or that we need a second opinion, because their so and so has seizures and they have a normal life. Yes, people with epilepsy CAN have a normal life. Yes, people with epilepsy can gain seizure control without a special diet, but Handsome isn't one of those people. Handsome is the minority. I get that they are trying to help, but we have seen 4 amazing neurologist. We have gotten second, third and forth opinions.

6.)"Don't you worry about his future?"
Of course we worry about his future. We worry what school life is going to be like for him. Will he be well enough to attend school and will the kids notice he's different? Will he ever be able to live on his own? Will he get married? Will he have a future? I haven't had a night in the last year that I did not cry myself to sleep worrying about his future and just when I start to just take it day by day and not worry about his future, someone comes along and asks me this questions and all those fears come pounding down on me again.

I understand people are curious. I understand people are trying to help. I understand that some people just don't know what to say or how to act, so I try not to let it get to me too much. I try to shrug off as much of it as I can and I do appreciate their concern. I really do. I'm thankful the lady who asked about his feeding tube thought he was cute and that people try to offer advice on different types of treatment, but some days, I'm overwhelmed with stress and worry and asking a question or making a statement to me about my son in an insensitive manner can really make my day worse. So I just hope people don't take this as me being a B word and that instead they learn to be a little bit more cautious when talking to the parent of a disabled child.