Happy Birthday Sam!

Seven years ago God entrusted Steve and I to this sweet soul, changing our lives forever.  I remember the day clearly.  There were some complications with her birth and she spent 4 days in the NICU.  It was a whirlwind time at the hospital and we were so thankful that we finally got to bring her home.  I still remember vividly my 8 pound baby in the the NICU...she was  moose compared to most of those babies...

With birthday tradition I am sticking with my norm....

The "7" things I love about Sam....


1.  Her shirt says it all... Sam is always full of smiles...no matter what...
2.  Her laugh is intoxicating
3.  Her love for life..she finds pure happiness in everything
4.  Calling everyone and everything a "good girl"
5.  Her excitement for school....well it's because of the bus...but she loves school too.
6.  The way she plays the guitar...air guitar that is...She LOVES music!
7.  The way she faces each and every challenge with her happy go lucky attitude

Never did I imagine what our life would be like today 7 years ago....Yes, our life has been challenging but truly I am blessed, blessed beyond belief.  Sam has taught us so much in these 7 years that many will never have the privilege of learning.  While at times I feel like I could have a degree in neurology and orthopedics, Sam has taught us to be patient and to trust in God's plan.

 

Happy Birthday Sweet Sam!



Memories..the good, the bad and the ugly..

Hard to believe that tomorrow marks the 2 year mark that I at age 39 became a widow.  That is 730 days that I have spent by myself raising my three precious babies.  What a trip it has been.  Truly the first year I think was a HUGE fog, I truly don't remember much about it, I was literally numb and in disbelief.  The second year has been pretty difficult I can't lie.  The numbness has worn off and the fog has lifted and I have had to face the fact that he is gone.  But there have also been more happy days than sad, and for that I am greatful.  There are still times that catch me off guard and bring me to my knees.  I truly feel blessed for where we are now.  We have become a pretty close knit family...yes we still argue and get on each other nerves, but the bond is so hard to explain to someone that hasn't expereinced having something ripped from them.  We are all pretty protective and compassionate for one another.  I am blessed with the most amazing kids! 

I wasn't a perfect wife, but I was perfect for him, however, I have had a lot of time to reflect on my marriage and what I would do differently if I had a second chance with Steve. I can remember when we decided to have children so many people told us to make sure that we took time for each other and that we continued to date one another and to keep the spark alive.  Sadly, we didn't listen to this advice....Don't get me wrong, we didn't have a horrible marriage, but I sit and wonder how AWESOME it could have been if we would have made a few small adjustments.  I challenge you to sit and think where your marriage struggles at times and try and make a few small adjustments to make your marriage and even better marriage. And if you are single, divorced, or an only parent, think about what has gone wrong in previous relationships and what you can and will do when the right person comes along.  Why do we stop learning and growing in our love relationships?  Why do we become so complacent?  I mean this is a person we want to spend eternity with, why wouldn't you want it to be the best that it could be?  Pray daily for your relationships.

Another area that I feel I have grown in is that I truly try not to sweat the small stuff.....maybe a little too much to a fault.  Losing someone you love tends to put life into perspective.  It truly drives me crazy to see people get so wrapped up in the petty stuff.  While I have had a horrific thing happen to me, I refuse to let that comsume me...I choose to see all the blessings I have in my life.  I do still have an occasional poor pitty me day, but I think we all do.  But mostly I try to remember what is truly important in life and that is the relationships that you have with people.  Focus on people----people.

As more time goes by it is harder in some ways because you close chapters in your life that once contained that person and begin new ones that don't have them in it.  I often catch myself thinking was that before or after Steve died...and that makes me sad.  As I sit and type this tonight I cry because I know exactly what I was doing 2 years ago at this time and know that in just a few short hours it was all taken away.  I am a much different person that I was 2 years ago...and I will never be that person again. 

As July 31st gets here tomorrow...do me a favor...LOVE and I mean LOVE the people in your life unconditionally and give them grace.  Don't try and change them into the person you want them to be, love them for who they are and make small changes to improve your relationships.  And....if you live near a QuikTrip....go and have a Chicken Taquito in Steve's honor. Why a Chicken Taquito??? Well, it wasn't until I started going through all his receipts that I realized how much Steve loved them, or was it because it was a cheap meal?  That will be one question I will ask him when I get to heaven.

As for the kids and I....I think my friend Kathy said it best...We are thriving....because of God's love and the love of all those around us.  Thank you to all who continue to help, pray and support us.  We will continue to do so because that's how we roll....in Steve's honor.

You never know....

what you have till it's gone....how true that saying is. It was 18 years ago today that I married the love of my life. I have so, so, many good memories from the 16 years I got to spend with him and I have 3 beautiful children to remind me of the love we shared.. For that I am blessed. I have wanted to write about something for quite some time but couldn't find the right words as I worry about offending people with my posts. But truly I write to help me but also in hopes that I will help others learn from what I have been through. So here it goes.... As I approach the two year mark there are many things I miss about having a husband. There are many things that I took for granted and many things I feel guilty about...you know the whole if I had my life to live over what would I do different list. One that is pretty prominent right now is that I wouldn't take our physical relationship for granted. From kissing to... Well you know... Truly I miss the closeness a kiss brings, both physically and emotionally. I truly have come to realize that at least with Steve and I, I showed my love for him emotionally and his expression of love was the other. Maybe more information than you care to know, but I have a feeling this doesn't just apply to my marriage. So while at times I was frustrated because I didn't think he showed his love for me... He really was, just not the way I thought he should. I wanted words..verbal or written that expressed his love for me. While he wanted me to express to him my love in his way...talk about miss communication. So I urge all you women to take heed...take time, step away and let him express his love for you in his way... There truly are different love languages and sometimes it's good to learn a different language.

A Day in the life of Sam

Well I got the phone call that I had been wanting for over 5 years now yesterday.....and now I am not quite so sure I wanted that call.  Our new neurologist in St. Louis called to let me know that we now have a diagnoses for Sam.  Yes I am glad to have a diagnoses as now I can make better choices for her and know what we are up against.  Yet, my heart is breaking.  Sam has been on the ketogenic diet for almost 2 years now and it has done wonders to help her seizures.  However, most people truly don't know how intense this diet is and it will now continue to be for 11 more years.  Yes, I typed that correctly...11...ELEVEN...more years.  You see Sam has what is called GLUT1 deficiency.  Her sweet little body can't transport glucose to her brain and the brain needs glucose for energy and development.  That is where the ketogenic diet comes in, her body has received the energy from fats for the last 2 years because of this diet.  So the good news is without even knowing it we,Steve and I, made the right choice to put her on this diet almost 2 years ago to help control her seizures.  Had we not made that choice her delays would be much more severe as her brain would not have received the energy it needed to grow and develop.  Blessing in disguise for sure.  So why 11 more years you ask?? Well typically at age 18 your brain is typically finishing developing...or so the research says.  Blessing number two...while it's 11 years at least she won't have to do this diet her entire life. 

I want to share with you what a typical day looks like for Sam, not because I want pitty but because I want people to be more aware of the challenges that people with special needs children face every day.  As always learn from me and grow as a person.


7:15   Wake up...usually on her own, but some morning I have to wake her for school
7:30   Bath time - at almost age 7 I am still having to do everything...undress, wash etc...she is getting better at undressing herself...a work in progress...but those darn shirts deal her fits.
7:50    Breakfast 
           I am blessed with two older kids who help weigh out her meals...without them I would be lost!  Right now we are stuck on one breakfast that she likes....Peanut Butter Smoothie... Out comes the scale to weigh everything out...has to be precise to the ratio of fats/carbs/protiens in check.  And she has to eat EVERY single bite, as this is truly her "medicnine" to keep seizures at bay. 

Peanut Butter Smoothie
70 grams    Heavy Whipping Cream (no milk...too high in carbs)
15 grams    Chocolate syrup (fat free/sugar free)
34 grams     Egg Beater
25 grams     Peanut Butter
12 grams     Canola Oil
10 grams     Coconut Oil

8:15      Leave for school...If breakfast isn't finished Ms. Wendy will finish it with her at school.  Some days are HUGE battles to eat and others aren't...just depends on the mood of Sam. 

9:00     Arrive at school.  Yes we still go in summer because that's how they roll...and I am SO blessed to have them in my life.  We have good days and bad days at school but overall, Sam LOVES school.  She does like to assert her independence and will plop herself on the ground and not move when it's something she doesn't want to do.  She has even been put in time out...Shocking I know to some of you who know Sam.  She is a little spitfire at times.  Love her to pieces though

11:30  Head home.  Most car rides are good and she might fall asleep because she is so tired.  Others she screams the whole way home because I can't figure out what she wants.  Not having good verbal skills can be so frustrating sometimes...for her and for me. 

12:00  Lunch or Nap depending on if she fell asleep

Sample Lunch: (alternates between about 8 recipes)
Ham with Cheese and Fruit

69 grams  Heavy Whipping Cream
22 grams  Fruit
19 grams Ham
21 grams Cheese
13 grams  Coconut Oil
25 grams Mayo

All the items she eats are VERY brand specific, so it's not like I can whip up her lunch just anywhere.

1:00-2:30  Lunch or Nap

2:30-6:00  Hang out, read books, play. 

6:00 Dinner

Sample Dinner
Chicken and Fruit

81 grams Heavy Whipping Cream
30 grams Fruit
30 grams Chicken
10 grams Coconut Oil
23 grams Mayo

There are times we do go out to eat, but we have to pack Sam's meal to take with us.  She does pretty good with eating out without to much complaining.  Occasionally she gets treated to McDonalds and can have the hamburger patty with 7 grams of french fries (remember a paperclip weighs a gram), so that's not many fries.  She also will have the heavy whipping cream with this.  We have had to be very creative with different ways to prepare the whipping cream....I couldn't imagine eat whipping cream with almost every meal. 

We have come a LONG way since the start of this diet almost 2 years ago.  She used to fight me on EVERY meal.  Now it's occasionally when she is needing control in her life.  Her favorite is to hold the food in her mouth.  Have you ever tried to make a kid swallow?  Well let me tell you it is a challenge! 

8:30  Bedtime
She is not one to complain about going to bed and for that I am greatful. She is sleeping better but still wakes up at least 1-2 times a night.  It has been a LONG time since I have slept through the night.

So there you have it... Sam's day...But understand there are such struggles as she has a VERY limited vocabulary and gets frustrated easily because we may not understand what she is needing. 

Spencer and Sydney are truly wonderful with all of this.  They are master meal preparers! So while I am facing many more years of this diet at least I know now that her brain is getting the energy it needs for growth and development.  While her progress will be slow at least I know there still will be some progress.  One of the biggest heartaches for me is when I see a child her age and realize how truly far behind she is.  Another heartache is how some people, adults and children, react to Sam.  I know it's ignorance, but it's so sad.

Yes, I am blessed....and yes there are days I need reminding of this.  So thank you for your continued prayers...we are going to need them for a LONG time.  Here's to 11 more years!

Ever have one of those days???

It's been one of those days that you wish you would get a letter in the mail warning you about... Crappy day on April 22nd take precaution. But it doesn't work that way.... Please don't send me messages and tell me how blessed I am...I know I am, but I am also entitled to crappy days every once in awhile, as I am human.

Today we celebrated the life of one of the most amazing women I know. She is the one that drew Steve into the praise band at church, that helped him find one of his many passions. I truly think that by Steve becoming a part of this wonderful group it was the pivital point in our faith journey. It is what got us hooked on being a part of something bigger. For that I am so blessed.

As we celebrated her life it was one of the most painful experiences that I have sat through...as I sat in that same place almost 2 years ago. My heart ached...ached on so many levels....ached for her husband, children, parents, family, friends and for her church family as well. But ached because I stood there by myself feeling this pain...while having Spencer and Sydney there was comforting, it by no means is any comparison to having that person standing by you that KNOWS you from the inside out and hurts because you hurt. I miss that, I miss that more than I ever care to let on..... It made me want to scream this is not the life I had envisioned for myself or for my children. This sucks!!! I know I am not in control and that I don't always know what the big picture looks like, and I say this because I know God can take it and will still love me any way....as long as I don't stay stuck here. I miss him.....miss the connections....miss him.

Happy Birthday Sydney!!!!

I cannot even believe that it has been 10 years since I gave birth to my first daughter. Ten years...WOW! It seems like yesterday that the nurse was holding me off because the doctor wasn't there to deliver and they had called in a doctor from the ER...who told me he had read about how to deliver a baby. But just in the nick of time my doctor rushed in and delivered this sweet precious baby...

The top 10 things I love about Sydney.....

1. Her flair for fashion

2. How she wears her heart on her sleeve..she is so caring and compassionate to others...two legged and four legged....

3. The strength she possess when things are hard

4. Her love for her "babies" and how she cares for them....she is going to be an awesome mom one day.

5. The beautiful smile she wears that lights up any room

6. How she stands up for what she believes in, even if it isn't popular with everyone else

7. The many "I love you's" before she goes to sleep.

8. Her quick wit and silly sense of humor.

9. Her hugs...she has the most embracing and wonderful hugs a mom could ever want.

10. The love she has for her dad and how she talks with me about missing him.

Sydney,
You truly are a beautiful person on the inside and out. We are truly blessed by being able to call you our child. I am so glad God entrusted us with you. What a bright spot you are each and every day. I love you more than you will EVER know. Thank you for being you!!!
Love,
Mom

Light a candle....

I have to say that I felt that I was doing pretty good going into this second Christmas without Steve. Pretty good until our church service tonight. As we lit candles my pastor talked about the darkness that many people face in their lives, and boy have I faced darkness. There were times when I know that the devil had a hold on my heart, but then there was light. I hurt for all those people out there that don't see the light and hope that Jesus has for us. You see my tears are for a few reasons, one being that I am no longer building that faith with Steve, but mostly because of how many people just don't get it. They focus on the negative and forget to look at all the blessings they do have in their lives...they truly don't see and "light" in their lives.

I am not a strong person, but I am strong in my faith. The only reason I have gotten as far as I have is because someone has carried me. Truly how blessed I am this CHRISTmas. Let us all try and be a light in someones life this season.