Still here!

I promise I am still alive and kicking.  Things have just been super busy and I have been making a sad attempt to stay off of the computer during certain times of the day....pretty much once my kids are home from school, until they go to bed (I am a constant failure at that).    Anyways, until I can get on here and really do a post, I want to share this article that I saw posted on facebook by a friend.  It is very touching, heartbreaking and totally eye opening. 

 Just click right HERE!

Hope you are having a great week as I am rounding out a very crazy past two weeks!!!

They call it the Kestenbaum Sugery b/c it is the BOMB!!!

Ha....that title could mean so many things.  The surgery that Sweet T recently had is called the Kestenbaum Surgery.  As most of you know, it is a double eye turn surgery.  In one way it was not the bomb but like a darn boom.  Poor little fellow really struggled for a few days after having that surgery.  But in so many other ways I would say the surgery is THE BOMB!

On Thursday we headed out to Atlanta to see Teg's doctor.  Even though I was a little anxious (just b/c that is what I do whenever I am leaving my house:), I was very at peace b/c I knew that there was going to be nothing but great feedback from her. 

Tegan's eyes are still bloodshot and probably will be for a good while.  She said that hopefully they will be cleared all the way up by February....WOW!  When she measured his head tilt before surgery, he was turning his head 35 degrees to the left side.  That is a very huge head tilt and one that would lead to a very painful neck problem in his future.  As of yesterday he is measuring at a 10 to 15 degree head tilt.  That is a significant difference.  It will make a world of difference for him pain wise and socially!  To be honest, I don't notice him tilting it a lot so either a 10 degree head tilt isn't that much or he doesn't do it all the time.  She said that for right now, that is as good as it gets because of his age and how short the eyes muscles are at this point in his life.  She said that she couldn't have asked for better results.  When placing his muscles back to his eyes, she went as extreme as she could and so far so good.  Although I was terrified, Dr. Amy Hutchinson at Emory has been such a blessing.  It is hard to trust the judgement of others when it comes to your child...especially his eyes.  When researching her and getting a second opinion before surgery, we were pretty much told that if we were going to let our son have this surgery, she is the one to do it.  I have been so thankful that in the beginning of this whole process, 4 years ago, the hand above placed us in the perfect place for our son to get all the help he could. 

I'm not sure I ever want to watch Tegan go through something like that again but so far I am glad we did it.  His eyes will continue to heal and hopefully continue to improve for a very long time.  In the words of Dr. Hutchinson, "this surgery is a really big surgery and a really big deal".  Since there is so much more healing to do, I really do believe that Tegan's nystagmus and head tilt can completely go away but if not, I am just praising God that he can see, walk, run & play!!! 

Much love to all of you and thank you from the bottom of my heart for all the prayers for my little man!

Forever Changed....

On this day, five years ago, I said hello and good bye to my precious baby boy. Today I feel peaceful, sad, blessed, and raw. In the past five years I have been up and down. I have been in and out of every emotion you can imagine. Time may have helped me learn to deal with things but time sure hasn’t made me forget!

Today I am experiencing some sort of writers block.  My flow for words, especially on this subject, seems to be totally blocked.  I have prayed hard for the past few days for a peaceful and numb day today...I think the good Lord gave me exactly what I asked for.  Yes, I have cried, hurt and been sad but I have also laughed, worked and went on with my normal everyday stuff.  My God has blessed me with exactly what I needed today! 

Dear Cohen,

Today I am closer to seeing you again than I have ever been before. Today is my day to cry. This is the time that I let myself go back and remember every detail of the worst week of my life. I still ache and long for you every day. When I close my eyes I can see you, smell you and feel you! Most importantly today I want to tell you that you are one of my biggest blessings ever. All of my kids have taught me things but the wisdom I have gained from your tiny little life….that wisdom overflows all other.  You forever changed me and I continue to learn from you daily!  I have found peace with your passing but that hasn’t taken away my hurt for you.  Today I am fine with the fact that you are celebrating on the knee of Jesus instead of my own.  Today I love you as much as I ever have.

Love, Your Mommy

Cohen Minish, Oct .04 2006

 

Wait

by Russell Kelfer

Desperately, helplessly, longingly, I cried;

Quietly, patiently, lovingly, God replied.

I pled and I wept for a clue to my fate . . .

And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.

"Lord, I need answers, I need to know why!

Is your hand shortened? Or have you not heard?

By faith I have asked, and I'm claiming your Word.

"My future and all to which I relate

Hangs in the balance, and you tell me to wait?

I'm needing a 'yes', a go-ahead sign,

Or even a 'no' to which I can resign.

"You promised, dear Lord, that if we believe,

We need but to ask, and we shall receive.

And Lord I've been asking, and this is my cry:

I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,

As my Master replied again, "Wait."

So I slumped in my chair, defeated and taut,

And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .

and He tenderly said, "I could give you a sign.

I could shake the heavens and darken the sun.

I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.

You'd have what you want, but you wouldn't know Me.

You'd not know the depth of my love for each saint.

You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;

You'd not learn to trust just by knowing I'm there.

You'd not know the joy of resting in Me

When darkness and silence are all you can see.

"You'd never experience the fullness of love

When the peace of My spirit descends like a dove.

You would know that I give, and I save, for a start,

But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,

The faith that I give when you walk without sight.

The depth that's beyond getting just what you ask

From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,

What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,

But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see

That the greatest of gifts is to truly know me.

And though often My answers seem terribly late,

My most precious answer of all is still . . . Wait."

 

 I wouldn't change a thing and couldn't imagine my life going any other way! 

 He knew exactly what I needed in this life....all three of my children!!

Paper Pretty!

As I have said before, I am venturing in to a totally different type of business these days and so far I am LOVING it!  It gives me the chance to still be creative but not have to run all over town (30 minutes from my house) collecting supplies like sewing did.  I didn't think I would ever say this but I have gotten burnt out with sewing.  I still love it and still plan to do little stuff here and there but that will mostly be stuff for myself, family or friends, not for business purposes.  With being back to work there just isn't enough time to run around buying supplies every other day & then making the item.  I have actually been posting lots of my sewing stuff on ebay.  Most of what I am posting is fabric that I bought a long time ago and have never gotten around to using or all the embroidery blanks that I have but will also probably never use. 

So I started learning as much as I could about different design softwares.  Digital backgrounds and graphics are like fabric for me...addictive!  It really gets my creative juices flowing and I love it.  I opened up a shop on etsy, Paper Pretty Designs, and started creating.  I have been so blessed that in the past two months I have had 83 sales.  Those sales don't include the sales I have had from friends and facebook!  You can like my facebook fanpage HERE!  Then suggest my page to others.  With all the facebook changes I think the easiest way to do this is just to suggest it one time as your status.  You can say something about it and then just put @Paper Pretty Designs and it should highlight it blue and link to my page.  Very simple! 

I have been working hard to create lots of Christmas cards.  I am very anxious to start listing them but I keep watching etsy to see if other Christmas cards are selling yet and they aren't so I am trying to time it just right.  I am doing everything from very simple and traditional to stepping outside of the box with very funky original cards:)

Below is just a taste of the Christmas cards I am working on!  You won't find these cards on the Walmart photo site:)

Get super cute and modern baby shower invitations!

Birthday invites to go with any theme plus you can get matching printable cupcake toppers, party favor tags, thank you cards, birthday banners, water bottle wraps, etc..

  LOVE my little business and very blessed to be doing something I love so much!!!

Random stuff!

Things seem to be moving right along.  Tegan went back to school this week.  His eyes are still a little pink but that is something they told us to expect for a very very long time.  It is still really hard to tell about the success of the surgery especially when it comes to him seeing far away but I can tell you that it is looking like it solved the problem of the head tilt which was the most noticeable feature of his eye condition.  It will be totally awesome if it stays like this and doesn't set him up for being picked on by other kids as he gets a little older.

The picture on the left was about 5 days after surgery and the one on the right was last night.  Huge improvement in the color. 

 

I continue to place him in God's hands and believe that everything is healing just like it should be and that he will be just fine!

Yesterday I went to the grocery store and bought me several healthy choices instead of my normal ice cream and chips for snacks.  I heart pinterest so much and have been pinning all types of recipes on there.  I had saw this a while ago and wanted to give it a try.  Of course mine didn't look nearly as beautiful as the one posted by KevinandAmanda that I pinned (you can click her picture below to go to see how she did it).

The one on the left is the one I pinned and the one on the right is mine:)

Source: kevinandamanda.com via Tabatha on Pinterest

Of course I had to modify it for my taste.  I used the same granola that she used b/c it was on sale and was the cheapest:)  Of course I used strawberries but let me be clear...they were the most sour strawberries I have ever had.  So I ate as many as I could stand and then started eating around them.  She uses regular yogurt.  I am just not a regular yogurt person.  I have tried to like it but just can't.  So I used about a 1/2 of a cup of Mayfield's frozen vanilla yogurt and poured a small amount of 2% milk over it to make it softer. I poured it all in my cup and it was great!!!  Had my strawberries tasted better it would have been perfect!  I am not a granola person but granola on frozen yogurt is AWESOME!

Life is moving along as usual although I am very tired all the time.  Not your average body tired but my eyes have seemed so heavy lately.  I am pretty sure that I have went off to sleep at least 3 times in the past two days while driving down the road.  Maybe I have developed a bit of narcolepsy....whatever it is, I hope it passes soon.

Happy Wed. everyone...let us hope that the rest of the week is smooth and fast:)

What Should Have Been

I have a best friend named Larkin.  We became great friends during her senior year and my junior year of high school.  After she graduated we lost touch for a while but then I married a guy that went to the same church as her and her husband.  For years we have talked or sent rather lengthy emails to each other on a daily basis.  It is very rare for us to not talk to each other except when each of us are on vacation and even then we sneak in a phone call or two:)  So it would only be right to say that her joy is my joy and her pain is my pain. 

This past Monday my best friend was suppose to deliver her healthy baby boy.  Plans had been made and the c-section had been on the books for months.  Today, Friday, she would have been coming home with that healthy baby boy.  Tonight she was suppose to have a sleepless night while she was up and down breastfeeding her little man but instead she will have a totally different kind of sleepless night. 

What should have been....isn't!  This past Monday instead of celebrating new life she is in the throws of grieving one month since she was delivered a devastating blow.  It was the kind of blow that sucks the life right out of you and changes you FOREVER!  At 35 1/2 weeks pregnant she was told that her baby had passed away.  Two days earlier I had wrote this post about how I had felt like something was going to go wrong.  Since this happened to her I haven't had this feeling again.  I felt it coming before I knew it was there. 

That day she called me from a room in her Dr.'s office.  I still get chills when I think of her crying so hard that I was unsure that she had just told me that "He was gone".  I was shocked, sad, devastated and taken right back to what that feels like.  It is a feeling you can never forget!  That awful moment when they tell you that the life inside of you isn't perfectly healthy like it should have been!  That moment everything changes for the rest of your life!

The next day I was at the hospital with a pit in my stomach.  I felt every single thing she went through that day.  I felt like I was losing one of my own family members plus it took me right back to the day almost 5 years earlier when I had experienced my own loss.  I was so blessed that she allowed me to see her son after he was born.  There is only one way to describe him and that is absolutely PERFECT!  He was so perfect.  I cried for her.  I cried for him.  I cried for me.  I will forever be thankful to her for letting me be a part of that moment and for allowing him to be a part of my life.  I will never forget his face.

I watched as she held her little boy, Landon.   I watched her in an out of body kind of way when she was taking her finger and following his face over and over and over again.  I could feel it b/c I did the same thing.  I think as moms it is a natural instinct to memorize our precious angels during that brief time that we can.  I watched them bring her the very same things that were given to me after my own experience.  I couldn't believe this was happening. 

All those years ago when God brought Larkin in to my life he already knew that this day would come.  As I have talked to her for hours and walked this walk with her, I have ached for my own son and for her son.  While I have hurt, I have also felt some peace.  I pray nightly that Larkin will find her peace in a much shorter amount of time than I found mine.  Finding peace doesn't mean that it doesn't hurt but on that day my peace came in the form of  "if this happened to me so that I could be there for her, I'm OK with that".  For five years I have walked a very lonely road.  Yes my husband has been there and others have been there (including Larkin) but for the first time in five years when I talk about a feeling that I remember having or may still have, someone knows exactly what I am talking about.  Before she can complete a thought about how she feels, I can finish that thought for her b/c I know.  I desperately wish that I was still walking my lonely road.  I had gotten use to being there and was fine with it but now I have company.  

Even though she has me, I'm not all she needs.  She needs you to mention her son.  She will probably cry when she talks about it but just remember that you didn't make her cry, the death of her son is doing that to her.  She needs you to not be afraid of her.  Yes she is fragile but she is already broken.  I promise you that you can't break her anymore than she already is.  She needs you to know that all because she looks OK doesn't mean she is.  All because she laughs doesn't mean she isn't feeling the pain.  All because life goes on for you doesn't mean it will ever fully go on for her ever again.  She needs you to know that this is a process and she may be angry or she may be short with you but just remember that grief beats a person up from the inside out.  Most importantly she needs you to love her, pray for her and remember that Landon was real.  He was so real and so perfect in every way. 

I wrote the above for anyone who knows someone that is going through this or has experienced something like this.  My heart has never healed from losing my own son.  It doesn't matter how far out I get from my own experience and my own raw emotions, something can take me right back to that moment in a heartbeat.  This has definitely done that to me but that's OK.  I'm OK!  Everyday she will get up and beg for God's mercy while she grieves.  Then one day she will wake up and praise God for giving her that mercy.  I don't think you ever get over something like this but you do get use to it and learn how to cope with it.  I am so very blessed to be this person in Larkin's life and I plan to carry her for as far as she lets me or needs me to because I know that getting over what should have been is virtually impossible!   

One week later...

I am happy to report that Tegan is recovering awesomely (is that a word) from his surgery.  It has been one week and I am so glad to see him improving everyday.  He has spent the last 7 days resting & laying around a lot but his spunk is starting to return. 

I can tell a difference in his head tilt already but it is still very hard to tell if we got the results we wanted from the surgery.  I guess we can't rush it b/c she did say that it can take six months to a year to fully recover from this surgery.  The plus is that he isn't tilting his head to the left at all anymore.  He use to have a pretty major left side head tilt to see well.  The negative to this is that it seems to me that his vision isn't as good as it was before the surgery.  Now I don't want to jump the gun on that b/c it can take up to 3 weeks for the brain to adjust and relearn what it should see from the new position but I'm just a little worried about it.  He just isn't seeing very well when things are far off or directly on the ground in front of him.  I have also noticed him tilting his head to the right a little which is totally not what we want and will defeat the whole purpose of the surgery.  Well actually, we don't want the head tilt or the vision loss! 

I'm just trying to stop testing him daily and just give it some time but it is very hard to do.  It isn't everyday your kid has his eyeballs turned to a different direction!!! 

He is eating, drinking and playing again.  His eyes are wide open.  They are still very red but nothing compared to what they were.  In fact they have improved a lot over the last 24 hours.  The only real trouble we seem to be having is in the mornings when he wakes up his eyes are somewhat stuck to together and it takes him a while to get them open.  Plus he is sensitive to light in the mornings but after about an hour of adjusting and getting his eyes open...he is good to go! 

Here is what his eyes looked like last Friday....

And this is what it looked like yesterday....

Sorry for the bad quality, he wouldn't let me use the flash. 

I took him yesterday to his school to see his class.  I did it to somewhat ease the blow for him just in case his eyes don't improve.  As kids do, most of his class was shocked to see his red eyes but it didn't seem to bother him.  However it did bother him when we were leaving and ran in to my nephews kindergarten class.  My nephew asked what happened to his eyes and that prompted the entire class of strange kids to turn around and start making comments about his eyes which it totally normal I know.  He got really shy, asked me to hold him, and buried his head in my shoulder.  He kept asking why everyone was looking at his eyes.  My prayer is that they clear up a whole lot over the next 4 or 5 days before he goes back to school.  His pre-k teacher is really awesome and has showed lots of concern for him.  She has also been great about preparing the class for Teg's red eyes and talking to them about him.  I really do love that she seems to already care a lot for Tegan.

Hopefully by next week things will get back in to their regular routine around here.  I don't know about you but I thrive on routine....even if I hate it!!!