Friday, May 28, 2010

Ouch!


Little Sammers,

Do you remember just a couple weeks ago? We were driving to OT to have a session with Tiffany. We were almost there when someone drove out of nowhere. I promise baby, I tried to stop. But we crashed. And you screamed. I was so frazzled. I remember hearing you scream, and then I heard a ticking noise. I tried to get out of the car but had to push the door open. Then I realized I hadn't put the car in park. When I did, the ticking noise stopped. And you stopped crying once I held you. The firemen were first on the scene and they immediately disconnected the car battery. That was the last time that we would hear our little car hum ever again.

Looking at this car makes me feel so grateful. I know there are worse accidents, but you aren't in those. You were in this one, with me. And even though it wasn't my fault, I still think about it often, how it could have been worse. I'm grateful for your car seat! It held you safe and tight. Who ever plans on this happening? Not me.

You know, I'm so glad you're ok. The silly thing is that Daddy and I are both really sad to say goodbye to this car. This car has so many family memories. We've had this one car since we got married -- so that means when we got pregnant, we went out to eat in celebration -- this car taking us there. When we got your unofficial prenatal diagnosis, I cried sitting in this car. When the geneticist advised us not to have anymore children, I cried again, in this car. We have had numerous doctor appointments and emergency drives to the hospital. You have thrown up in this baby, wailed your heart out, and giggled uncontrollably in this car. We also drove Callie home from the airport in this car...becoming a family of four. I ran errands with the two of you behind me, in this back seat, for 2.5 years.

I want you to know that it's ok to have a little attachment to things. There are memories and emotions connected with those. But remember, but they are just things. Remember that Mommy, Daddy, Callie and a whole world of people adore you. They are who you should invest your heart in.

I'm so grateful you're mine and that you're here.
I love you,
Mommy

Thursday, May 27, 2010

Sick

Samantha,

I'm so sorry that you're sick. Isn't that just a bummer? I guess almost everyone in your class is sick. That makes me sad. I get frustrated sometimes because you have never been as sick as you have been this past year...and I'm convinced it's school! I was a teacher. I know what it's like to be in those germ infested places. It's a great place, but people get sick sick sick. And now you are sick sick sick.

But you know what's good? I think I heard angels singing today -- because you actually took a nap! Can you believe it?! I know. Sammy, you have to remember, try try try to remember how good this nap made you feel. And maybe, just maybe you'll take a nap again one day. Grammy held you for about 1/2 hour, and then you woke up coughing. I took you, and together we laid on the couch. I read as you snored. Yeah, it was a little distracting, but you have a cold, so I'll let it slide. I think you may have a slight fever too because you feel a tad warm. But Sammy, you slept today!

Hopefully you get feeling better soon so you can be back off to school...hopefully after this long weekend.

I love you baby!
MommyP.S. Check out how long your hair is! I can't believe it myself. I tried to cut it yesterday, but you were too squirmy. Better luck next time, 'eh? Love you tons!

Monday, May 24, 2010

Sleeping

Dear Sweet Samantha,

Oh how I wish I didn't have to wake you up this morning. I mean, let's get things straight...you woke me up, but then you fell back asleep on the couch as I held you, like you do every morning (alternating days with Daddy). But today, you curled up in such a strange position. Hey, whatever works. But then I had to wake you up for therapy. I'm sorry. I wish I didn't have to because you were so soundly asleep -- so peaceful.

But, I'll have to do it again tomorrow. Here's my apology in advanced.

Love you,
Mommy

Saturday, May 22, 2010

Two Reasons I love You

Little Samantha,

Tonight, I'd like to highlight just two reasons why I love you.

This evening, I gave you a bath. You enjoyed the bath. You splashed and yelled really really loudly. You had a good time. After your bath, I decided that I would try something new. I decided to blow dry your hair. I've done this before, but not like tonight. Tonight, I used my round brush and everything. You loved it. You loved the loud noise. Immediately you began to giggle. And surprisingly, you sat still long enough for me to get the brush through your hair. I think it was the warmth against your bare skin that you so much enjoyed. Either way, I love the fact that you love loud noises and that it makes you happy. Not only is this just really fun for us, but I feel blessed that you do enjoy loud noises. A lot of special needs children are greatly bothered by loud noises. I consider us lucky that this is one thing we don't need to worry about -- because we sure can be a loud and rowdy people over here.

Second. I went out to buy a bridal shower gift tonight. I took you with me while Callie stayed home with Daddy to watch Caillou. You were very pleasant -- and I was happy to get a few compliments on your hair (see the round brush really does work). But the best part of the evening was when we walked back to the car. It is extremely windy today, and as we walked out of the building, the wind blew in your face. You started to giggle your adorable, contagious giggle, and then you opened your mouth. I love that you open your mouth to catch the wind. It's so funny. You do it every time, and it makes me happy.

Oh little babycakes, you make me happy.

Love you to bits,
Mommy

Thursday, May 20, 2010

Potential New Diagnosis

Sammy,

You have never had blood work done to get a clear cut diagnosis -- never had a DNA test of any kind. Your diagnosis, from the time you were 3 months old and we met with our genetist at Primary Children's Medical Center in Salt Lake City was called Primary Autosomal Recessive Microcephaly (since then, I see it written in journals as Autosomal Recessive Primary Microcephaly. I'm not sure if the order of all those words really matters or not.) We were told at that time that there were no genetic tests yet for MCPH (an acronym for the true scientific name). So, we went off of the expertise of this doctor -- Dr. Susan Lewin. It was convincing enough.

Last year, while we were in Spokane, your pediatrician, Dr. Olson, strongly encouraged us to do some genetic testing. Sidenote: I loved Dr. Olson. He was a great great doctor who also happened to be the chair of the special needs unit at Sacred Heart Children's Hospital. I miss him. Anyway, he informed me that Spokane had access to some intricate testing that is only available in certain areas of the country, and we needed to pursue that. So, we did. We met with a geneticist there in Spokane, who, after reviewing your file, concluded that you did have MCPH and there was no testing available. Off we went.

At that point, I was content. I didn't feel like I necessarily needed a genetic test to confirm your diagnosis. But, I did always feel a desire to find out more and to pursue something. Last year, as I was doing some internet research, I discovered that there now was a genetic test for MCPH. It wasn't 100% because currently only 7 genes were identified, and they believe there are maybe 2 more. And, the test cost about $5,000. Yikes. Your dad and I talked about it, and decided that this was something that we may want to do in the future. This time, though, I wanted to get the test done because, surprisingly, you didn't seem to match the common MCPH profile. I was shocked. Sure, you matched up with a few...and in all the research I had done previously, you had only matched up partially -- but I blindly accepted that as "all kids are different" and I just trusted the unofficial "official" diagnosis. But this time, certain parts of the profile listed on this testing information didn't match up and it caused me to consider that you may not have MCPH.

When we moved to San Jose, your physical therapist, Kathy, had something written on her report that shocked me. It was stated that you had Seckel Syndrome. I had never heard of that before. She said that the doctor had that on your file. What? No one had ever told me that -- which was disturbing as I pride myself on knowing your files inside out. I'm usually on top of all this stuff. On Tuesday, your school nurse called me. I told Elva about Seckel Syndrome, and she came prepared to your IEP the next day.

"Jenny, I looked up Seckel Syndrome and printed this information off for you. This describes Sammy perfectly to me."

After getting home and reading it, I have to agree. I really think your microcephaly is secondary to your Seckel Syndrome. And now, I'm very antsy to get a genetic test done.
Here goes:

* Extremely rare "Between 1960 and 1999, fewer than 60 cases were reported"
* Low Birth Weight
* Very small head
* Mental retardatin
* Facial features
~ Beak-like protrusion of the nose
~ large eyes
~ narrow face
~ low ears
~ small jaw
* Abornomalities of bones in arms and legs (we've never checked, but based on certain therapies we are doing because of your hips, etc, I wouldn't be surprised if this was the case sweetie)
* Growth delay
* Hyperactive and easily distracted
* Prenatal cranial abnormalities and growth delays
* Seizures

...and there's more, but I grow weary of typing this all up.



Sammy, you match every single one of the above characteristics -- though I'm not sure if your medically small enough to have this. And, you don't match all the MCPH characteristics -- one of which being seizures. Back when we met with Dr. Lewin, she said that you woulnd' thave seizures. When you started to at 7 months, I told everyone that you were supposed to be having them...something didn't make sense to me. That's why I believed your seizures weren't so much from your microcephaly but from something else. I don't know. It just didn't settle right with me. Now I know...or have a clearer understanding that you may really have the wrong diagnosis.

So there you have it Sammy; you may be a primordial dwarf. Do you know how many people have asked me that and I've said "no" simply because I assumed the geneticists were correct? Boy do I feel silly now. You are already a little larger than most primordial dwarfs, but you are far smaller than your age says you should be. Everyone who has seen Kennedy on TLC thinks they have you figured out. I just don't know. But, I promise you we'll find out so that if you do have dwarfism, we can be aware of everything and make sure your bones stay healthy and strong.

I love you sweetheart. I love you so much. My heart just overflows with love when I think of you and how proud I am of you. You are incredible and I just adore you.

Love,
Mommy

Wednesday, May 19, 2010

Car Accident

Oh Little Sammy,

Monday was a horrible day. While driving to your occupational therapy appointment, someone pulled out of a side street right in front of me. I couldn't stop in time. I tried. Believe me, I tried pushing my foot down on the brakes as hard as I could, but he drove out right in front of me. I couldn't stop. I slammed into his car and you let out a terrifying scream. I have never been in a car accident before, so this was a scary experience for me. But knowing you were in the car with me set me in a deeper panic just before we hit. After our cars crashed together, I found my phone, ready to call 911...but then saw that others were already on the phone. Then I got out of the car as fast as I could to get to you. You were crying. I tried to assess the situation...were you ok? Was it ok for me to pick you up without causing more damage? I could see that you were moving around just fine, so I quickly got you out of your carseat, and you immediately stopped crying.

This car accident was emotional for me on many levels. It's been a couple days since the accident and I have gone through a lot of different emotions. I've felt a lot of frustration. The car is completely totaled and we'll need a new one. I'm in a lot of pain, and that's just plain inconvienent. But what shakes me up every time is knowing that you were in the car. Sitting behind me, you were involved in a car accident, and I was driving. I know it wasn't my fault. I know there is nothing I could have done to avoid it. But it still makes me cry thinking about how I could have lost you like that. I'm so grateful that, even though our car is gone, that it protected us. I'm so grateful that the accident happened where it did -- where the speed limit was only 35 miles per hour. And I'm so so grateful for your car seat, that it held you secure.

I love you so much.
Mommy

Sunday, May 16, 2010

Occupational Therapy

Sammy has been adjusting well to her new therapists here. It's taken some time, but she's doing well with them. At first it was really hard for her. Both her physical therapist and occupational therapist are new. That's not always a bad thing. Hey, we all have to start somewhere. I was a new teacher once. But, being an old "new" teacher, I understand that there is a level of comfort that is definitely lacking when you commence the work. At first, it seemed like her therapists were so nervous around Sammy. That really bothered me. And it was hard because we came from Spokane, WA where we were placed with some of the best therapists in the region. We were very blessed. So, to come from that to this was a big adjustment for me. But, just like most things, if you give it time, it all turns out well. Sammy has adjusted. The therapists understand Sammy, and they actually work quite well with her. I'm impressed with someone who will ask for help, someone who recognizes that they need a second opinion...and both of our therapists at CCS (California Children Services) have people come in so they can ask questions. I'm confident in their abilities but feel even better knowing that they will seek out the advice they need.

I'm still on the search for water therapy -- not just special ed swimming lessons -- and hope that I can find one soon.


video video

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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

Friday, May 14, 2010

Love

Sammy,

I'm not sure what you can completely comprehend at this point. You are almost 4 years old, and that's a pretty big deal little girl. And over these 4 years, each day I grow more and more in love with you. Your messy hair and gunky nose don't sway my opinion of you one bit. If you can possibly understand one thing, know that I adore you. You are beautiful and wonderful, and I love you. Dad loves you too. No matter how big the room is, your little smile can light it up; you have lit up our world.

We are all born with gifts and talents. Some of us are better at certain things than others...and I often find that I compare myself with the amazing people around me. Don't do that, ok? It's a waste of time. There will be many people who look at you and take pity, or feel bad for you. They see your physical restrictions and make big assumptions based on your small head. Some people may shake their heads thinking that it's all such a shame. There will be some people who see you and are absolutely curious. They want to know all there is to know about you, because let's be honest -- there's not a whole lot of kids like you -- you are special in the truest sense of the word, but they won't know how to ask. So they may come of ackward or even kind of mean. That used to make me feel bad. I used to cry when that happened. But, I see now that they are just trying to figure things out...and having never approached this before, they stumble or don't think before they speak. (Shhh sometimes I still get mad when people don't think before they speak...or act. I think it's ok to be sad sometimes, or angry...but keep it in check, ya know?) BUT, MOST people I've met, even with all their curiosities and wonderings marvel at you. That's right. You make people marvel. You make people smile. They see you and smile and laugh. You brighten people's day. And sweetheart, you remind people of their Heavenly Father. They may not realize it in the moment, but you bring goodness, light, and hope into the hearts of all these people -- and those are characteristics of God. Maybe you can't walk very well. Sure you can't say too much, or feed yourself. You currently lack common self-help skills...but one gift that you have that I wish I had...was your innate ability to bring hope and love to the hearts of people whose eyes meet with your yours. You are an angel.

So Sammy, things may be hard sometimes, and you may not understand everything, but understand that you are amazing and extremely, extremely loved. You're my little baby, forever. You're my sunshine.

I love you,
Mom


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