Looking Back

I recently came across an old post on our family blog.  At the time I wrote that post, I was scared.  I was scared for Samantha's future and our own -- as a family.  I often contemplated what our lives would be like without her.  I was in fear of waking up one morning without her.  I was in fear of all the what if's that all of a sudden entered our lives when we stepped into our new special needs life.  I look back and read this post and a flood of emotion comes back -- the sadness, frustration, panic. 

As I reread this post, and remembered those feelings, it occurred to me that looking back was exactly what I was doing.  I was looking back.  Looking back to a time that was difficult.  Looking back to a time when I felt like I was struggling to breath at times.  Looking back to a time when I felt alone and a bit isolated -- as much as I tried not to be.  Looking back to moments when I thought I just couldn't make it.  Looking back. 

As I read, I was looking back at what once was -- and reflecting on what we had overcome.  See, you can only look back when you have made it through.  The tunnel may seem dark and narrow at times.  You may begin to feel claustrophobic and like the tunnel will cave in on you, especially when you can't see the end.  And while you're army crawling through that dark tunnel, sometimes it feels like you can only see or feel where you currently are.  But, ultimately, when you make it through, that's when you have the pleasure of looking back and seeing what you made it through. 

In deep appreciation today, I reread that post -- realizing where we are now.  Reappreciating how in love I am with Samantha and Callie, and Marcus.  And feeling an increased amount of respect, honor, and love for my Heavenly Father -- for sustaining me during that time.  I didn't realize it then.  It was only a logical sustaining.  I understood, logically as I leaned on my quivering faith, that He was helping me.  But today, I look back -- 4 years later -- and know He guided us through.  

I'll never know the future.  I can't predict Samantha's life.  But I no longer fear for her.  Now, we are going through a particularly good, stable time in her life.  And I'm sure, in fact I have no doubts in my mind, that fear will creep its ugly way back into my life...but then, when that happens, I hope to stumble upon THIS post, so I can look back and be reminded that I can make it through...I can feel love and peace...and I will know He's there.  And that will help me to once again look forward.   

Reality Check

Samantha,

You are a light in my life. In so many ways, you make me a better person. You give me perspective and true happiness. You inspire me.

I'm working on a book ~ because of you. Because of what you have taught me. Because of the road you've led me on. A book. This morning I emailed someone who is contributing a part of this book...and I cried. I wept as I wrote about how her story was inspiring...but I wept because of what she went through. She lost her son, at a very very young age. And I kept thinking of you. What would I do without you? I would feel so empty.

And then I read a blog post of a friend of mine. She wrote about her daughter, Leah. Remember Leah? Though you both are so different, she reminds me of you. Her smile that brightens the entire room. Her big, shining eyes. Her long hair always done up. (I try Sammy. I really do. It may not look nice by the end of the day, but I try.) And then there's the lack of control over your bodies. And the lack of verbal communication that must make it so frustrating for you both. Leah is so precious. She's a good friend to have. And her mom was writing about Leah, about how things happen that are out of their control, and how she fears losing her. I've been an emotional mess. The thought of Leah leaving them is killing me. I don't think it's in the near future, but I ache right now for them. Ache.

As I've been working on this book, I've been thinking a lot about faith and hope. These are good things. Great things. They are what keep us going. And that is precisely why I'm doing this book. But, today, the reality of the lives we live hit me. No matter how much faith you have, there is still real pain. Job was a very good man, but he wasn't spared pain and horrible trial. Faith will help us, but we still have to go through it all, and sometimes, I just don't want to. I don't want my friends to. I don't want anyone to go through it. I can struggle through the years with you, but the thought of having you go...I can't really bear that right now. So stick with me kid. Ok? Because I think I need you for a little longer.

Love you to pieces,
Mommy

Neuro Developmental Therapy

Samantha has had many priesthood blessings during her short life. All of them have brought me peace in the moment, but some of them I think of often. The words run through my mind and I am constantly reminded of blessings the Lord has in store for her.

When she was born, her great grandfather gave her a blessing. Because of certain things that were said, I have felt that there are things we need to do in order to help her achieve her earthly potential. I have tried very hard to be her advocate...to do whatever we can to help her progress...to take her therapies seriously, etc. But, I'm also just her mom...so I love and hug her as much as I can, and if she's upset...well, I've been known to tell our therapists, "I think she's done for the day." BUT, I can also be one tough cookie. There's got to be balance, right?

There was another blessing she received where she was told her head would grow. I remembered being shocked. Samantha's head measured small in utero, but continued to grow...until she was 4 months old. At that time, her head stopped growing, and measurements have been the same since then (32 cm) and she is now 4 years old. No growth. But, I have faith in that blessing. So, how can that be? Well, maybe in the next life. I asked her neurologist once about brain growth, and he said, "Well, as long as progress is being made, the brain is growing. It may not be measurable, but there's some kind of growth." That satisfied me. I felt like as long as Sammy was progressing, there was fulfillment to that promise.

About 8 months ago I spent many hours reading a series of books by Glenn Doman. I was intrigued and read as much as I could. He has an institution in Pennsylvania where you can get your child evaluated and put on a program. I felt pretty sure that we needed to do this, but I didn't know how to do that. A friend directed me to Patty, a woman in our stake, who had gone through a program based off his research and saw huge successes with her children. I immediately called Patty. She told me her story (her story consisting of 3 of her children) and told me about Donna Bateman...a therapist who was trained by, and continues to work with, the Family Hope Center -- an offset of Glenn Doman's institute, pedagogy, etc.

Long story short -- we met with Donna. She flew out to San Jose and did an evaluation on Samantha. (And, this was way way way less expensive! She's a mom who became trained herself because of her son who had his own problems. She is now wanting to share this with the world...and does.) She did an evaluation on Samantha. She got us set up on a program. And we will begin next week.

The idea is that you need to start at the basics of the brain. There are certain reflexes, reactions, skills that kids should have. If they don't, then we need to go back to those and work on those before we can move on. It's so much more than that, but this post is already too long. We went to a seminar that explains it all (though you can get all the information in Doman's books), and Marcus, who is spending many hours a day studying for the EPPP (psychology licensing test) found that what they were teaching us matched what the scientific world knows and says about the brain. So, no funny stuff here. Marcus, the good man that he is, is often leary about what I introduce. He wants facts. Research. Stuff to back it up. But, he usually goes along with it as long as he doesn't see any danger in it. This time, we both feel so good about this path we're pursuing, and I can't wait to begin.

Side note: Research has shown that with this program, brains grow. And not just how my neurologist told me...but the actual measurements change. I can't help but wonder if we will see any changes, if this will be a greater fulfillment of the blessing Samantha was given. Either way, though, we press on.

This Mare Eats Oats

Maren, a friend of mine from back in our BYU days, is a fantastic person. Our paths crossed for a short time at school, and we reconnected when I moved out to California. She lives not too far away, and it was fun to know someone in the area. When Maren's daughter was diagnosed with Rett Syndrome, I remembered what it was like to get the news that my life was going to change forever. That I was entering the "special needs" arena. I felt a different connection with her ~ and her attitude, her realness, her drive and determination have made me respect and love and be in awe of her even more.

Recently Maren asked a group of women to share "How I Do It." She asked li'l 'ole me to be one of those women. I was flattered. Today, my post is up on her blog. I have written about Samantha many times, but I've never sat down to think about her and our life in these terms ~ how do I do it? It was good for me to write. So, go on over and check out This Mare Eats Oats...and while you're there, check out the other stories. They are truly inspirational.

Thru the Tulips

I was asked to share our story on Thru the Tulips. Feel free to check it out.


Also, this month my friend, Maren, has invited several friends to share "How They Do It?" How they survive their various trials. She extended the invitation about a month ago, giving time for them to think and properly write down their thoughts. They all have been so touching to read. If you have time, it's worth going over to read these inspirational stories by such amazing and strong, faithful, incredible women. I feel like I've been made better by just reading their stories. It's worth the time.

Heartache

Sweet Samantha,

Today my heart aches. Last night, you had a very rough night. I wasn't sure why, though I assumed it was your cold. You woke up Callie, and I ended up "sleeping" in your room the rest of the night (which as you know means I didn't sleep at all). We didn't go to church today. At 4am, I decided we weren't going to church today. Around 5am you had a seizure in my arms. That hasn't happened in a while. Poor sweet girl. You were asleep when I heard the clicking sound in your throat -- you struggling for air I've always assumed. I put you on your side and begged you to come out of it quickly as I realized I only brought one Diastat to Michigan with us, and I always like to have a spare. You came out of it and began to kick your legs pretty severely as you've been doing the past 6 months or so when you come out of your seizures. Then, surprisingly, you feel right back to sleep in my arms. I've been going to the chiropracter here to fix my neck pain from the car accident, and I'm finally feeling normal. But after last night, my neck isn't feeling so pretty again. It was worth it. Every moment.

My heart isn't necessarily aching because of your seizure. Those suck. Let's be honest. I hate that you have them and it makes me sad every single time. Luckily, professionals believe there was a loss of consciousness during grand mals, so hopefully you don't remember much when they are done. What is really aching my heart, however, is news that we received this morning about a friend of ours. Their son, about 26 years old, is married and they have a baby. Last night, he had some seizures, and is now in the hospital with no brain activity. His seizures were the result of a different problem that occurred, but it still makes me fear for the day when you have a seizure, and that's it. I'll hold you in my arms as you convulse, but you won't come out of it. And instead of my heart aching, it will shatter. And I wonder at my ability to pick up all the little pieces. What would I ever do without you Sammy? I ache for our friends who are now suffering. I think about how much pain I would feel if we were to lose you, and we've only had 4 wonderful years with you. They are sitting in the hospital remembering 26 years of love and sacrifice and...love. Oh how I ache for them, and so much dread that day for us.

I do find peace in knowing that families are forever -- but the pain, I know, is still very real. I love you sweet girl. You are the sunshine in my life. You are amazing in all ways. You just light up a room with your smile, and you have lit up our lives. I'm not sure how it all worked out, but I'm sure lucky to be your mom. I love you with everything I have in me.

You'll always be my baby girl.
Mommy

Pictures of you January, 2008.

I Miss You Already

Sweet Sweet Samantha,

My heart is aching right now, just really really aching. There's a little friend of yours, who we never met, but also had a diagnosis of microcephaly. His name was Ben. Do you remember me telling you about him? Well, he just died a couple days ago and I just found out. We don't know the details, but I think it was pretty fast and unexpected.

Sammy, do you know what I want to do right now? I want to run into your room, risk waking you up, just so I can hold you all night long. I can't imagine my life without you, and it kills me knowing that some day I may have to face this same scenario. Ben was only 8 years old. You will be 4 in a few weeks. Little girl, you're getting old! But still, you haven't been with me long enough. Four more years won't be enough. Ten more years won't be enough. I love you so much, you know that? Please, stay with me for as long as you can, ok? Because just thinking of you gone makes me miss you already.

So, as I sit here crying, hurting for this family and then, of course, thinking of you...I am so grateful to know that not only do you have a great daddy here, but we have a Father in Heaven too...and He loves us...and I don't say this lightly when I tell you that everything will be ok, no matter what. Oh, I'll have to remind myself of this a lot, but it's the truth.

I love you sweet girl. I won't wake you up...just peek in your room.
Sweet Dreams.
Mommy

Faith Not Fear

Dear Sammy,

I wrote this last week and found it in my files -- but for some reason didn't publish it. I'm not sure why. So, though I'm not feeling this way anymore, I thought it was important for you to know some of these feelings I've had. I love you to bits.

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You have taught me a great lesson, though I suppose today I needed to be reminded; I needed to relearn this lesson today. Before you were born, I wasn't sure what our family situation would be. I was told you may die. I didn't believe this, but I prepared for it. After you were born, I was told to expect severe mental retardation. I prepared for that. There have been "little" things along the way that I've had to prepare for simply because I don't know what to expect -- and I was scared.

I'm not really scared of the same things anymore. I'm not worried (as much as I was) about you and what will happen. I know it'll be terribly difficult to handle some situations that may arise, but I believe I can handle it. We, as a family, will be able to handle it. I don't worry for you. I don't worry for your life. I have had many moments that have confirmed to me that Heavenly Father is very aware of you, and I feel very comfortable knowing that you will be taken care of -- that you are fulfilling a special mission -- and no matter how hard certain things may be for me to deal with, I don't worry about you.

But lately, I've been a little scared about the future, because of you. I'm sorry. I hate to say that because really you have been one of the best things to have ever happened to me. You have shaken my globe and all the little snowflakes that are now coming down are landing pretty perfectly -- because of you. Even still, even with this knowledge that I have, I find it difficult to push aside my real fears of having another biological child again, or as we adopt -- if they will understand that I love them immensely, even though at times you require more of my attention. I worry about our future and our children, as a family. I fear for the day when one of your siblings says to me, in all sincerity, "You don't love me as much as you love Sammy." I do the best I can to make things equitable, to teach Callie, to love her, to help her be involved with your care as much as she can, to build a real relationship between the two of you...but I constantly pray for Callie and your other siblings (future) so they know of my deep deep love for them. After you were born, I thought I'd never be able to love another child as much as I love you. I truly thought that would be impossible. But I think you'll be happy to know that it is possible -- that my heart somehow expanded the day Callie entered our home...and I'm confident that will happen again one day when the time is right. So far, just having the two of you, I have found so much joy, true joy, in motherhood. You both bring me joy in different ways, and I fallen more deeply in love with both of you by the hour.

Today in church, Bishop Wallace mentioned "Faith not Fear." That really spoke to me as this is something that I've been thinking a lot about lately. If I can more diligently rely on my faith, then I'll be ok.

I love you to pieces, and I know we'll always be just fine.
Mom