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.

It's the little things....

that can bring me to tears in a moments notice. There have been numerous times lately that I have been told "we will be thinking of you this holiday season". And trust me holidays are difficult, but when we focus on the traditions and spending time with family they are much more bearable than one would think. But truly it is the little things that bring me to tears. For instance, on Wednesday it was dress up day at Spencer's school. He decided he wanted to wear a shirt and tie...no problem...have the shirt and clip on tie...we are good to go, until the clip on tie breaks, and well it was too short. So Spencer decides he wants to wear one of Steve's tie, which brings a smile to my face. But also brought me to tears....not because it was Steve's tie, but because I have NO FREAKING clue how to tie a tie. Spencer "googled" it and was trying to teach himself. He ran out of time before he had to leave for school. I kissed him good bye and sent the tie with him telling him to find someone to help. The door closed behind him and the tears fell from my eyes. I sent him a text that said "So sorry I don't know how to tie a tie. Makes me sad as the best person to teach you never got the chance. Love you tons". So it's the little things that hurt the most, those things that catch you off guard and make you realize the huge hole that is left in every one's lives.

On a good note though, there are good people out there....thanks to Aunt Laura for finding a teacher at school to help him get it tied.

A lesson to learn from me...

While this has been on my heart for quite some time, I haven't written about it because I didn't truly know where to start. So forgive me if this doesn't make sense. While going through this grief process there are many things that I miss about Steve, his smile,his beautiful blue eyes, his voice, his quirkyness, his touch. While there are somethings I can do to ease the pain there are some things I can't do and yearn for. I can watch videos to hear his voice, look at pictures to see his beautiful smile or watch Spencer for the silliness. But his touch is something I cannot find in anything left behind. The touch of my children's hugs are not the same as the hugs that he would give me. Sleeping with my children does not even compare to being next to him. So many things that I took for granted....the hug to make me feel safe and secure, the reaching over to hold my hand while he was driving, the shoulder rub while I was fixing dinner. I truly never realized how important the human touch was until I know longer had it....from the one I loved and the one who loved me.

So please learn from me, cherish the touch....for it can never be replaced.

Pray for me....

because I am now a mom to a teenager! Truly I can't believe that it has been 13 years ago that God entrusted Steve and I with a child. We truly have been blessed.

13 Things I love about Spencer:

1. The way he texts me before he gets to school with our secret code
2. His beautiful blue eyes he got from his dad
3. The way he loves to scare people, but hates to be scared himself
4. His love for learning (a teacher's dream :0))
5. The fact that he isn't afraid to try something new
6. How big his heart is for others, but most of all for Sam.
7. His deep seeded faith.
8. The positive outlook on life, even when things are rotten.
9. How he loves to tell stories about his dad to make us smile and remember.
10. His beautiful smile that lights up an entire room.
11. His compassion for others, even those he doesn't know.
12. Doing things to honor his dad, and his dad's memory.
13. His understanding of what truly is important in this life.

Spencer truly is one of the most amazing young men I have been around. Sure, he's my son and I am supposed to say that, but truly he has a heart of gold and I am blessed to call him my son.