Wednesday, September 26, 2012

10 Things I Want Our Other Kids To Know

Adam is home on fall break which means my routine is messed up. If my routine is messed up EVERYONE'S routine is messed up. I was just sitting here thinking that there are SO many things I wish I could tell my other kids. They are 15, 7 and 5. So I'm going to write down ten of them. Enjoy <3 p="p">
1) You are JUST as important, special, loved and miraculous as your brother. So many times we get caught up in appointments, medicines, treatments, therapies and school work that we don't take the time to look you in the eye and tell you that you are loved just as much. Even if we forget to say it, we see the 97 in 10th grade math, the 100's in all your 2nd grade classes and the fact that you are finally able to write an A beautifully! We are so proud of you!

2) I wish we could spend more one on one time together. I can't imagine how hard it is for you to step back and let your brother take up so much of our time. All three of you are so patient with us and wait until we have spare time to spend with you individually. Harold- you show us so much grace it's unreal. Emily- you're right there beside us, helping us take care of your brother. You always forgive us when we have to change plans. Ellie- my precious... You're growing up so fast. I love being surrounded by your pinks and purples, glitter and baby dolls. Stay little just a little while longer.

3) Your strength amazes me.  The hospitals, the surgeries, the needles, emergency rooms, doctors, and medicines don't scare you. If it does, you deal with it and move on. I honestly don't know how you do it. God gave you all amazing strength. You can, and have dealt with unimaginable things and you came out stronger.

4) It's ok not to be strong all the time. I know- kind of weird after number 3...but seriously. Come to us with your problems. Cry on our shoulders if you need to. We're your parents and we want to help. Nobody is going to love you more than we do. Other than God. Ever.

5) TELL US. About your stupid argument with your friend at school. That you just can't figure out this math problem. (Emily)  That moving up in Sunday school and having to leave your best friend behind is kinda hard on you (Ellie). That you want to play football and baseball (Harold).  We want to know the day to day of your lives. This is normal- and normal is GOOD! :)

6) Frustration is normal.  Sometimes we all have bad days. We all get frustrated. It's ok to be that way. If you're frustrated in a situation- take a step back from it. Just leave it. Go ahead. It'll be there when you get your emotions under control.

7) It's ok to grieve. Your brother won't be the star quarterback. He struggles in school. Every day situations are overwhelming to him sometimes. He won't give you any nieces or nephews. You will have to help him for the rest of his life. Some days are just bad days. It's ok to be sad about it. It's ok to think about the future and grieve the what if's, the never wills, and the how's...

8) We serve an AWESOME God. Never underestimate His power. Ever. You have been witness of many miracles in your brother's life. Never forget that. Even when everything is all doom and gloom. He's the light at the end of the tunnel. Rest in him.

9) Adam LOVES you. Even if he yells at you. Even if he cries. Even if he says doesn't. Even if it seems like he gets sick or has a bad day whenever we have something planned just for you. It isn't on purpose.

10) Never ever give up. Ever. On anything. It's a famous quote. I don't remember who from... but it's true. Do you! Don't give up! We'll all get through this together. Remember that 'Incredibles' shirt that Adam has?? Well you need one too!

I can keep going on and on... Hopefully the kids read this one day. For now- I'm going to work on showing them more often.

Special needs kids are amazing. Their siblings are sometimes even more amazing. They're the ones ditching friends for using the "r" word. They push wheelchairs and strollers for tired moms and dads. They are the ones hugging melting down kids in the grocery stores just so mom can finish at the cash register. They do the dishes when mom falls asleep sitting up after dinner. They get up early in the morning for that 10-20 minutes of one on one time before school. They know how to measure medicine and can tell the doctor every one of their sibling's diagnoses. Their world stops when ours does. And they carry on where we left off after we die.


Thursday, September 6, 2012

To my babies : About your Grandmothers

If I could I would bring them back just so you could get to know them.
       None of you ever got the chance to meet your Nana (My Mama) on this side of Heaven. She wanted you all before you were even a twinkle in my eye. Every day she would ask me if I was pregnant yet. She chose her name "Nana". She wanted your Daddy and Papa to take you fishing and hunting with them. I wish I could have taken pictures of her or video taped her talking about her future grand kids. I am so sorry for not thinking ahead. She LOVED you BEFORE you were born. That is TRUE, UNCONDITIONAL love. You could see it in her eyes- they would just sparkle, and she would have the biggest smile on her face. She was SO looking forward to a future with you in it.
         Now about your Grandma (Daddy's Mama)..... She loved you ALL so very very much!
Emily- You remember Grandma rocking you in her chair and the fun you would have when she would pick you up from school. You also remember the love she had for ALL her grand kids. You were so special to her...she always took time out to sit and listen to anything you had to say. She also would tell you how much your Daddy loves you every chance she got. You had a hard time when you were little but it went away at Grandma's house. She took very good care of you with your Daddy and always made sure you had everything you needed when Daddy was working.
          Adams- You are the only grandchild that Grandma was in the room with when they were born. She was SO happy to be there! She didn't want to leave but Grandpa got her to after promising that he would bring her back the next day. Y'all rocked and rocked and rocked some more. When we left the hospital after having you we did two things 1) Ate lunch and 2) Went to Grandma's. She sat in her chair and rocked you all day long. She said you fit perfectly in her arms. The two of you spent many days just rocking. When doctors sent you home because they didn't know what was "wrong" with you or how to help she would sit and rock you. The whole time she would look at your Daddy and I and tell us that there "wasn't a thing wrong with that baby!" ... That you were perfect. She knew exactly what we needed to hear. YOU ARE PERFECT!
           Harold- Grandma's health got worse when I was pregnant with you. We used to go out with Grandma and Grandpa all the time and spend lots of time with them. She enjoyed wondering who you would look like and what your personality would be. She cried when Daddy told her your name was going to be "Harold Alan" just like Grandpa. She said she couldn't think of a better name and that if you ended up half the man he was you would be just fine. She liked to hold and rock you too. When you got a little older she loved to hear what you were doing and what new things you had learned. She called you "Keith's Mini Me" and loved your blond hair. You always sat by her and talked to her, sometimes for hours. You never forgot to tell her you loved her and she always said "I love you too Baby Boy".
           Ellie- Grandma loved it when you would sit with her and love on her. She was so happy to have another grand daughter. We didn't get to spend as much time with her as we wanted because we moved when you were 5 months old. She always told you she loved you and you always gave her kisses. I know she loved that.
           All four of you are precious, sweet, loving, smart, and beautiful. You didn't do anything wrong for your Grandmas to have died.. It's the exact opposite... God loves you SO much that he sent Jesus (his son) to die on the cross to save YOU (and me, and grandmas, and grandpas, and everyone) from sin.  NOTHING can separate you from God if you believe that. Both of your grandmothers believed in God and Jesus so right now they are in Heaven waiting on us! When your life is complete here on Earth and God calls you to Heaven you'll see them again. They are just out of our reach. The GOOD thing about Heaven is that time moves SO fast they won't even know we weren't with them! So smile babies- I love you so much and your grandmas wouldn't want you to be sad.

-Love you always, Mama

Thursday, June 21, 2012


Our two boys are so alike..yet so different. Most of the time life goes on and we don't really think about it other times- like last night, it hits me right in the face like a ton of bricks. Harold slipped on the kitchen floor and bit THROUGH his lip. There was screaming, and blood, and tears, more screaming,  and then a four hour wait in the local hospital's waiting room. 2 stitches later we got home at 1:45 am. My baby boy woke up and he has been doing as well as could be expected today. This sounds (or looks) wrong when I say this..but thank God Adam didn't slip! He could have been very hurt, or worse.  I'm thankful for both my boys. They're my buddies and I wouldn't trade them for anything in this world. Harold gives us our daily dose of "normal" he's broken a bone, he's busted his lip, he's gotten into poison ivy, learned how to swim, etc. etc. etc. We get our mild heart attacks from him, bandage him up, and go on about our daily lives without thinking twice about it. With Adam it's like one mild heart attack that never goes away, but gets worse with every bit of "bad" news we get. He's fragile. He's never hurt himself from being " a boy" but his body fails him in some way every day. He doesn't know what it's like to get hurt, heal, and feel good again. But he smiles. His giggles make us all laugh even when we are in our own little pity party. He puckers his lips up like a fish to kiss us and tell us that he loves us. The kid takes every blow with grace. I kick scream and cry on the inside (sometimes on the outside too) but he just deals with it. Most of the time with a smile on his face. He knows everything is going to be ok. So we have two boys. Two VERY different boys. Two STRONG boys. I love them both with every bit of my heart. I don't know how our life is going to end up. I do know that there is nothing I would change about it.

Monday, February 20, 2012

Dear Adams

Dear Adams,
You are eight years, ten months and one day old today. The day you were born I didn't know what your little life would bring in mine.
        Our little boy, you were brought into this world surrounded by those who love you.  Daddy, Becky, Grandma and I held our breath waiting on you to cry right after you were born. Daddy and Becky left me to go stand beside you while the nurses worked on you. They finally got you to cry. It's like you did it just to get them to stop messing with you because you stopped as soon as the nurse handed you to Daddy. The world stood still for all of us as you quietly blinked those beautiful eyes just taking it all in. Daddy and Becky love you so very very much. They have been your cheerleaders when you need pushed and my backbone when I can't find the words to say to people.  Love them, Hug them every time you can. Besides me- they are two people you can always count on.
     Those four days in the hospital we enjoyed you. We didn't know what was going on in the background. You had the best doctor because he knew something was different. Dr. Young sat up with you all night the night you were born searching for answers. He told me he stared into your little face and asked you to show him what to do. That's when he did the first karyotype. He never told us that he ran tests on you. The results came back and he didn't believe it so he drew blood for another test before we went home.
       When we got home Daddy and I realized you definitely were different. I had to sleep with you or you would get really cold and purple toned, you were a happy baby but we had to get different bottle nipples because you couldn't get any formula out of the ones we had, when we held you you didn't even try to pick your head up.We knew before we left the hospital that you had failed your hearing test but they said some babies just take a couple weeks to get fluid out of their ears. A home health nurse came by to check on us and gave us information on Babies Can't wait. We thought that was kind of weird but you had a hard birth so we figured maybe you just needed a little bit of therapy to get your strength back.                    
     Our family was and still is awesome. Emily loved holding you and we often heard her over the baby monitor whispering to you while you napped. I know that Emily is a teenager now and gets frustrated with you sometimes. She loves you. Her heart breaks when yours does. Keep hugging her and giving her your fish kisses - she loves it even if she acts like she doesn't sometimes.
    You were two weeks old when we found out that you had XXY and your balanced inversion. You also failed the second hearing test. We were referred to geneticists, endocrinologist, physical  therapist, audiologist, ear-nose-throat doctor, and the cardiologist. The geneticists didn't know why you had the physical issues you had because they aren't directly related to XXY at least not as severely as you had them so they sent us home to "enjoy" you as long as you were here. The endocrinologist didn't know why you were so small and not growing well and there was nothing for him to do as far as the XXY yet so he sent us home to come back in 2 years. The audiologist recommended ABR testing when you got a bit "stronger" because you would have to be sedated and you were too small for hearing aids. The ENT said you were small but everything was ok since we found the right bottle nipples and you didn't have a swallowing problem. Then there was the cardiologist. You had an enlarged ventricle, the hole that everyone is born with was enlarged and not closing yet. He wasn't willing to do anything yet about any of that because you were small and weak. He said if your heart didn't start closing the hole and catch up to the enlarged ventricle he may operate on it when you got a little bigger. This is when we realized you had way more going on. We realized just how much we needed God to heal you. We went on with life praying for  more time with you. People stopped us and told us how beautiful you were.
      We moved to Albany, closer to Papa and my family. Papa didn't miss any of those early appointments. The three of us (Papa, Daddy and I) bombarded doctors with questions. I'm sure the doctors thought we were all crazy. Papa loves you unconditionally. You're his first born grandson. You look and act just like him. Treasure that.
       We moved back to Cartersville when you were one. Your little brother was born exactly 17 days before your second birthday. He's been your voice, your strength, and your partner in crime. He is your best friend. I hope you two are always there for each other. Life went on, you were healthy despite a few bumps in the road, we eventually found ourselves on auto pilot. We juggled therapies and doctor's appointments like we'd been doing it for decades. Prayer got us through those baby and toddler years.
      You got hearing aids at age 3. You started pre-school at 3 because Babies Can't wait stops at then and in the public school system you could continue your therapies. When you were nearly four we had our little girl, Ellie. You are such a good big brother to her. The two of you have a bond like no other. She looks to you during the scary times and you are her source of strength. You always tell her what's going on and always have a hug for her and tell her everything is going to be o.k. Please continue to be honest with her. I can't imagine what it's like to be so small and have such big worries.
       You have been sedated over 15 times for tests, you have had six surgeries (two surgeries done at one time twice). We have since found out that you have two more genetic abnormalities, one a deletion and one a  duplication. You have Autism, Cerebral Palsy, XXY, Severe hearing loss, Fibrous Displaysia, vision problems, low muscle tone and they have had to fuse c1-c3 in your spine to attach your head to your body. You also have a bone growing into the foramen magnum- where the spinal cord and brain stem meet. They have cut this bone once but will have to do it again as you grow. Nobody can tell us how long you will be here with us, but I'm believing you'll outlive us.
     For now- we love you. I wouldn't change you for the world. This life is hard. The blessings are unimaginable. You have a divine purpose, going around for 7 years with scar tissue holding your head onto your body is evidence of that. Countless people have told us how much you have changed their lives. We went years with people telling us how weak you are. You are not weak. You are the strongest person I have ever met. Keep the love for God that you have now and remember that He loved you first.  I am honored and blessed to be your Mama. I love you. " I'll love you forever, I'll like you for always, as long as I'm living, my baby you'll be."

Monday, January 16, 2012

A new year.... new perspective.

So far this year has been crazy, busy, hectic...and.... absolutely wonderful! Adams has had a lot of appointments so far (crazy I know .... only two weeks into the new year) We are now homeschooling all of our kids (Adams included) and he has a 98 average!!! We have had bumps in the road, the VPI surgery was horrible and I never want to go through that again. The make a wish foundation is JUST now getting through completing his wish (eh, what can ya do). We found out that Adams' hearing loss is strictly conductive and that the inner parts of his ears work perfectly.  And.... we're looking at another surgery this Friday. After the VPI surgery the anesthesiologist said that he had a really hard time intubating Adams due to his anatomy and the cervical spinal fusion. It took them 45 mins and a camera scope to get it done last time so this time they had to go through all the risks and extra risks with me at his pre-op. Through all the surgeries, doctors appointments, bad days, bad weeks and months Adam is happy. Adam loves God. Adam doesn't question why his life is the way it is. He inspires us to be better people. I want to  live my life right because when I die I want my family complete. Adam will be there when God calls him - I hope when he's 90 or older of course... He knows that he is here by God's grace to fulfill a purpose. I wish I could be more like him. I want to have the peace about our situation, scratch that, his situation that he lives through. Pray for my boy. God's will be done. I'm letting go of the wheel like I have so many times before and I know that while Adam is in surgery Jesus will hold his hand just as he does whenever Mommy and Daddy can't.