11 years ago

Eleven years ago today a beautiful baby boy was born. His name is Cody Dylan Kyle. My nephew. I have rarely put into words how the life of this boy has changed mine forever and will continue to have a profound effect on me.

My sister and I were pregnant at the same time. I had Olivia on August the 3rd. After a very hard pregnancy and scary time afterward. We anticipated Cody's arrival very much! How exciting to have cousins so close together. I knew they would be wonderful friends.

Cody was due on January 1 but Krista was going to be induced on the 21st of December. Cody had other ideas and came on his own on the 18th. Weighing in at 10lbs 8oz. A big beautiful boy! I remember waiting to get the pictures and could hardly believe it! My little 8lb 3 oz baby looked so small in comparison!

We planned a trip home in February for my mom's birthday. We planned to go to the zoo and to get a family picture made. I had just recently bought a car and got my license after not driving for over 10 years. We made a stop in Charleston to visit my grandmother. I know surely now that God had His hand in all of this.

We had only been at my grandmother's house for about an hour when we got the call that would forever change our family. Cody had passed away. I can remember talking to my mom, I even remember talking to my sister and telling her over and over that I did not know what to say to her. I remember calling Harvey and not being able to get ahold of him. I remember dialing the phone to call my friends back home in NC. I needed people praying and supporting us because I did not know how I was going to make it through this. This was something that happened to other people. Not to us.

It was in the middle of all of this that I realized that in making the trip to Atlanta I was bringing a baby with me, Olivia. There was no way I could take her to my sister's house. My grandmother had just finished a round of chemo and as much as she wanted to go with me she just was not up to making the trip. So after much debate we decided it best for me to spend the night with my gran and then go to Atlanta the next day. I can tell you I had driven that trip many times in the days prior to all of this but it was the longest trip I have ever taken. I got lost, I felt like I was driving through quicksand when all I wanted to do was get to my sister so I could just hold her in my arms.

I finally arrived and went straight to my mother's house. I had to get the girls settled and wait for Harvey to get there so I could go alone to my sister. I did not want to take the girls, especially Olivia, to her house and inflict more pain on her. I called the house and Tony insisted that we come right then and I told him that until I heard it from my sister I would not bring Olivia there. The phone rang just a few minutes later and Krista told me to come. So I went dreading walking into the house with my precious baby and doing more damage than good.

I can remember getting to the house, and just getting to my sister. This is one of those things that until you are in the middle of it, you do not know how to act. I knew that people were praying for me. I knew I had to be strong for her and so I was. We hugged, we cried, I listened to her as she wept for her precious Cody. I managed to hold it together and was strong for her. All until I came downstairs and saw olivia playing happily on the floor with my BIL. Then I came unglued. How unfair was all of this? How would we survive this? Why did this happen???

Somehow we managed to get through the next few days, I remember standing with my mom and sister at a flower shop (A Daisy A Day in Snellville, and every time I drive by I think of that day) picking out a funeral spray for a tiny casket. I remember people calling and coming with food, I remember refusing to let Olivia be put in Cody's swing, I remember my dad coming for the funeral. I remember being at the funeral home thinking that this was all a bad dream that we would wake up from. I remember feeling horribly guilty. Guilty for having a baby that was still alive while my sister was laying hers to rest in a cemetery.

In the years that have followed there has been great sadness and great joy for our family. I walk a very thin line a lot of days when I look at my beautiful Olivia Grace and think of the things that Cody would be doing. Her first birthday was possible one of the hardest days of my life. Her first day of school. All of the milestones ya know? Or just some of the regular things like what would he look like, what would he be into, would he play sports or an instrument? I wonder if he would know how cool his Aunt Jenn is?

I have a lot of lessons that I learned along the way since that day in February that I am most thankful for. Among them, learning that friends who are there for you NO MATTER WHAT are a true blessing, family is so very important, and that God will carry you through no matter what. I still carry a verse that Cliff Easter gave me in those dark days (Romans 8:27) that even when I do not know what to pray that the Holy Spirit is there to intercede on my behalf, I have learned that God knows when I am angry and can handle it. There were many days that I would get in my car all by myself and just scream at God. He is big and He can handle my anger and sadness.

So every year on December 18th I get a little sad when I think about Cody's birthday, and I think about how AWESOME a nephew he would be, but I KNOW God has a plan and it is bigger than anything I can put together. I know that my sister aches on this day and all the days since Cody left us. And I thank God for letting us borrow Cody if even for a short time. In his short little life I know he changed ours forever. Happy Birthday Cody Wody! We love you and we miss you SO very much.

Love & Kisses,

Aunt Jenn

PS. Emma reminded me of something that I indeed must share. On our long trip to Atlanta I asked Emma what she thought Cody was doing in heaven with God that day. I was not prepared for her profound answer (she had just turned 6 in October, you know out of the mouthes of babes). Without missing a beat she said, "I think he is painting rainbows with God," so after I pulled myself together I thought how cool is that? We looked for rainbows at every turn, we never saw any until the day of Olivia's first birthday party. After her party we were going to take the kids to the movies and on the way there it got kind of nasty weather wise, so we came home and when we got out of the car there was a HUGE rainbow. It was my sign that Cody was with us and God was letting me know that it was okay. So now when ever we see a rainbow, I say hey Cody is sending us a rainbow!

What a difference a year makes

Wow! What a difference a year makes! This time last year I was packing my suitcase and getting ready to fly off to New Jersey for who knew how long to see doctors at Jefferson. It is good to take inventory and see how far I have come. You should try it too!

A year ago I walked with a cane, and unless I absolutely need it (like at a Braves Game or if we are walking far, or if I am having a VERY bad day and would rather not fall)

A year ago I had a misdiagnosis, now we know what it is and how to treat it (but now I wait until we have insurance to get it!)

A year ago I weighed 44lbs more while I am great with that I have some more work to do.

A year ago I had VERY short hair that was a different color!

A year ago I was a very scared girl (2 Timothy 1:7)

A year ago I did not have my nose pierced!

A year ago my dad was still alive. I miss him

A year ago I had a boss. I miss him.

A year ago I did not realize what a powerful woman I am.

A year ago I could never imagined how different my life would be, how the people in my life have made such a difference. Friends old and new, family & co-workers They keep me laughing, wipe my tears (which there have been many of over the last year), keep me sane and love me unconditionally. For that I am so grateful.

Thankful

I know that this time of the year brings out the "thankfuls" and most people move past Thanksgiving and that is it. I am thankful every day, or at least I try to be. So in no particular order I am gonna list out my thankfuls in no particular order...if I miss something or someone, please let me know!

*Music-I would be lost without it.

*My family

*My job & the people who I walk beside in ministry-I am blessed beyond measure

*Fuzzy pants-'nuff said

*Face Book-I know it's shallow, but I have managed to reconnect and keep up with people I love

*God's provision-my husband has been out of work since February, God is good

*Justin Melton-he has added so much not only to our church but to my life. I know that sounds cheesy but it is oh so true

*My sister from another mister, Melia who has managed to keep me somewhat sane in what has been an upside down year for me.

*My sister-who walked with me through one of the most difficult journeys of our lives.

*My dad-even though we did not have the best relationship, he was my dad. I miss him a lot

*My scrappy friends who recharge me once a month

*My mom

*weight loss...42lbs down & apparently I need to lose another 38lbs to be "ideal"

*Photography

*comfy shoes

*not so comfy shoes

*people who encourage me to not be so hard on myself

*inside jokes

*Good food

*being comfortable in my skin for the first time in a very long time

*good things

*bad things that make me stronger and wiser

*forgiveness for myself and for others

*laughter-which I do a lot of thanks to good friends, I have some funny people in my life!

*tears-which I do a lot of because I am a weeper!

*life

*death-that sounds so strange as something to be thankful for but it makes me realize that life is short and we should dance more, laugh more and not take things for granted

*my mac

*being witness to great miracles in the form of a little boy named Trey

*love

*a rockin pink coat

*a Braves coat that is special to me in many ways

*a great season from my beloved boys of summer

*a road trip with my sister and a night at the beach

*someone who taught me more about myself in a year than I had known in all the years previous

*chronic illness that has not defined me but refined me. It has taught me to really appreciate the good days because they are few and far between

*giggling with my kids

*sharing secrets with Emma

*roses in November

*chocolate

*my cell phone and learning how to text...but not texting and driving (Justin Melton)

*my contour pillow

*getting my nails done and feeling pretty

*Jasmine's Rabbit

*my ipod-I would be lost without it.

*being able to wear cute clothes

*Kathy, Melody & Melia who love me with no judgement

*knowing who my real friends are and who has my back

*finally getting my groove back. Now maybe my mojo will return and I can get back to creating beauty.

*Change whether I like it or not, it is inevitable

*for learning to filter (Justin Melton has seen me do it-it is possible)

*for fun

*Learning that I am strong woman

I could go on and on but for now these are my thankfuls. Now that I am back in a groove maybe you will hear from me more often on my blog!

xoxo

Jenn

Things You May or May Not Know...

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Mystenia Gravis (Grave Muscle Disease) & Diabetes
2. I was diagnosed with it in the year: MG 2009, Diabetes 1999
3. But I had symptoms since: the early 90's
4. The biggest adjustment I’ve had to make is: not being as active as I once was
5. Most people assume: because I look great that I am no longer sick, which is not the case
6. The hardest part about mornings are: Getting up and getting ready for work
7. My favorite medical TV show is: House & Grey's Anatomy
8. A gadget I couldn’t live without is: my computer or my ipod
9. The hardest part about nights are: not being able to get comfortable enough to sleep
10. Each day I take _10_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: think if it works that is fabulous but it is costly and not covered by insurance
12. If I had to choose between an invisible illness or visible I would choose: this is a hard question to answer
13. Regarding working and career: I am blessed to still be able to work and have people who understand that I am sick. I love my job.
14. People would be surprised to know: how much pain I am really in ALL the time.
15. The hardest thing to accept about my new reality has been: how much time I spend in bed.
16. Something I never thought I could do with my illness that I did was: get on a plane and fly to Philly
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: just being able to go go go all the time
19. It was really hard to have to give up: the idea that I may ever be healthy again, because there is treatment for my diseases but no cure for them.
20. A new hobby I have taken up since my diagnosis is: blogging, although I have not done so in awhile. I have not had much to say, or the energy to say it.
21. If I could have one day of feeling normal again I would: hop in my car and take a road trip
22. My illness has taught me: nothing in this life is guaranteed
23. Want to know a secret? One thing people say that gets under my skin is: Wow, you look fabulous you must be feeling better.
24. But I love it when people: tell me that they are praying for me or when they help me do things.
25. My favorite motto, scripture, quote that gets me through tough times is:

1 Peter 5:10 (this is one of many) And the God of all grace, who called you to HIS eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Romans 12:12 Be JOYFUL in hope, patient in affliction, faithful in prayer.

26. When someone is diagnosed I’d like to tell them: it is not the end of the world, it is just a new normal.
27. Something that has surprised me about living with an illness is: how truly painful pain is
28. The nicest thing someone did for me when I wasn’t feeling well was: there are so many.
29. I’m involved with Invisible Illness Week because: I want others to know about Invisible Illness
30. The fact that you read this list makes me feel: like you are listening and maybe learning a little bit more about Invisible Illness.

My friend Trey

http://www.cbsatlanta.com/video/23202568/index.html

My friend Trey is a star! Not that I did not already know that but now everyone else does! They featured him in a story last night on our local news channel. Go check it out. I got to hang out with this good looking guy daily for almost three months. Be jealous!

Love, Jenn

An open letter to my peeps

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don't seem like much fun. But I'm still me - stuck inside a body which doesn’t work as it should.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for nearly 3 years now. I can't be miserable all the time - In fact, I work hard at not being miserable.

So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to walk or perform normal every day tasks sometimes doesn't necessarily mean that I can walk or perform normal everyday tasks all the time. Just because I managed to walk or perform normal everyday tasks yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please understand that a chronic health condition is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying or even thinking; "But you did it before!" or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me a lot worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct - if I was capable of doing some things, any or all of the time, don't you know that I would? I am doing everything I can to manage the situation.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic health conditions can affect the whole body, Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can't always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It's definitely not for lack of trying.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you - people who are not sick. I need you to keep praying for me and asking me how I am doing. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot.

Love, Jenn

So I have somethings to say...

So I have not had anything to say in awhile so I took a blogging break. No point in forcing it or having a blog about nothing (although Seinfeld was a WHOLE show about nothing!). Well, now I have some things to say...

First of all, as always I appreciate your prayers and kind words more than you know.

Since I last blogged, Harvey lost his job and I am without insurance AGAIN. Can I just tell you that I am SO over that. I need to see a doctor but with no money and no insurance I am just stuck. I was supposed to have an appointment at the end of March with a doctor at Emory. Now that is on hold until we are back to the land of the employed and insured. The way it looks right now, that could be a long time.

I am still not feeling good. I am still not sleeping well at night. I am still in constant pain. I am now having new symptoms. I get the shakes in my hands, and I feel like someone is tasing me from time to time in different areas of my body. I still tire easily. I am a 40 year old woman who should be having the best time of her life and well, that just is not happening. It sucks.

I have lost about 30lbs since I started on the macro diet. It has been a good thing. I am human and I cheat every once in awhile (boy do I pay for that!) but for the most part it has gone well. I eat well. That is one thing people kind of think because I am on a special diet that I am eating cardboard and nothing that tastes good. Far from it. Tonight I had some fish, roasted yellow carrots with Rosemary & Thyme, brown rice and a spinach salad. It was delish and my plate always looks beautiful. it has become a lifestyle and it makes me think about what I am putting in my body and how I cook and what I buy. I am looking forward to a new Farmer's market coming to a local town this summer. Yay!

I do have something to say though. While I have lost weight and I am letting my hair grow out (that could be a blog all on it's own!) people keep telling me how great I look. I appreciate that. I really do. But I wish my inside matched up with the outside. It is really hard for people to believe that I am still a very sick chick. I am still walking without my cane...yeah some days that is easy and some days like today, my feet do not want to cooperate and I trip easily or my knee gives out. It is hard for me to do the simplest tasks. I hurt all over. Having an invisible illness (or in my case two of them) is HARD and just because you cannot see my sickness does not mean it is not there.

Over spring break both of my girls went to Florida on separate trips. Harvey and I decided to go to a Braves game. Go Braves! First game of the season for us and they won! But, I digress. Our seats were in the outfield pavilion, which is almost right inside the gate, we parked in the blue lot which is about two blocks away. We had a blast at the game but I spent three days in bed recovering. I should not have to do that. That is what I am dealing with.

I am trying hard not to put on my fake it til you make it smile. But I do not want to be Debbie Downer all the time either. Those who know me well know when I am lying and call me on it and I appreciate that too. It is just really hard when someone asks me how I am. I do not want to be THAT person that complains, whines and is all woe is me.

I have joy, I laugh a lot, I can be quite silly. I sing, I praise even in the midst of this storm. I know there are people who have it worse than me. I am thankful I can get out of bed and do the things that I do. I have great friends and family who love me. I am blessed.

Just somethings I wanted to say.

Love,
Jenn