2013: The Year of Letting Go

I have a habit of at the end of every year, trying to reflect on the events of that time, what I learned and what I plan to do with the lessons life taught me. 2011 was the year of sorrow (not a fun year but a very important one. We had 2 miscarriages and lost our son in the second trimester but I learned to value every gift life gave me no matter how fleeting), 2012 was the year of miracles (We had our beautiful daughter Natalie). I've had a few defining years in my life, but none quite like 2013. When you learn that your child has something like Sotos Syndrome, it changes you. In some ways it instantaneous, other ways it's like a slow churn. Little by little the soft shallow layers of myself have been chipped away and in its place is someone stronger.


 I've learned to embrace the new but more importantly this year taught me how to let go. 


LETTING GO OF ANGER- We spent the first year of our daughter's life being shuffled from specialist to specialist. We worried about things like tumors (before we knew about Sotos), therapy, MRI's and walkers. The general uncertainty of what to expect became our norm. We finally got our dream child and doctors were telling us there was something "wrong" with her. Then when I learned of what Sotos was, I'm not going to lie I was angry, hurt and scared. Angry because there was an answer to what was going on with our child and it took that long to figure it out (I realize now how stupid I was for thinking that 8 months was a long time when I've talked to other moms who had to endure years before finding out, but for me who is not the most patient person in the world- 8 months was an excruciatingly long time) Hurt because like most moms I hoped our daughter would have an easier go at life than we did. I worried about how my delicate little princess would fare in a world where things would be different for her. Don’t worry, it didn’t take long for us to realize Natalie was less a delicate little princess and more of a fierce little fighter (after all, she is a Freund/Evans hybrid- we’re a tough breed). And I was scared because I knew after that moment- nothing would be the same. It was a whole new ball game and I didn’t know the rules.

There were times when I felt anger would swallow me whole. I wanted that blissful ignorance back. I wanted those doctors to just be wrong. After years of trying to get and stay pregnant, this was supposed to be our happy ending. I was looking for someone to blame, and I found it in just about everyone. The mothers who did every drug under the sun and still gave birth to healthy babies. I hated them. Everyone who said, she’s going to be just fine, quit stressing. I hated them too. I wanted to scream: shut up you have no idea. The little girl in the Elementary school who said my child looked like an alien because of the way her head was shaped. Yeah, I hated that little kid too. Obviously, during that part of the year I wasn’t the most pleasant person to be around. As destructive as Anger is, it’s attractive. As long as you’re holding on to that, you don’t have to think about anything else. But at the end of the day there was a little blue eyed baby that needed me to get over it and let it go. I could hang on to the anger, or I could hang on to my child. Easy decision.

LETTING GO OF PERFECTION- It’s easy to get caught in the perfection trap. Look around you, everyone gets stuck in it at some point or another. We strive for the perfect marriage, family, house, job. We try to craft our “image” and fit into these molds that somehow is always just out of reach. If you’re not careful you find yourself doing things you don’t like or buying things you don’t need or even sometimes want just so you can measure yourself against someone else’s standards. Unfortunately this can go the same for our kids. This kid is prettier, this one’s smarter…labels, labels, labels. When you learn your child has Sotos you have to let go of your old idea of what “perfect” means. You learn quickly that someone else’s standards don’t mean anything. Our children are already perfect, no assembly required.

LETTING GO OF LIMITATIONS- I worried my child would never crawl- she did. I read that she might have a hard time speaking- this kid makes herself known, let me tell ya. It’s funny how quickly it becomes apparent that although it may take her a little longer to get some things, she gets it. I’ve let go of the idea that things can be impossible for her. Natalie is many things, but a quitter isn’t one of them. I don’t think I could limit this kid if I tried. But that goes the same for myself. This year I let go of my limitations. I am a wife. A mother. A writer. A social worker. A special needs parent mentor. I want to lead through example for my daughter. I want her to know it takes guts to turn your dreams into reality and do more than you thought you could. I want her to know that letting go of limitations are worth it.  

 I don't know if I believe in destiny or fate. I believe in God though, I believe he sets a path for us to follow and sometimes if you don't let go of the distractions like anger, perfection, and limitations it's easy to make a wrong turn once in a while. But those side roads don't ever seem to make you get to where you're going faster and sometimes it even takes you back farther than where you started. Not going to lie, I get stuck on those side roads- a lot. But being the idealist that I am I think of those times as like a refresher course, and when I finally clear away the brush and find my way back it's amazing. There is something liberating when you finally let go, say ok life this is what you give me now watch what I do with it. EVERYTHING in life is an opportunity. To me there is only two options, learn from it or make it better. So to 2013 I say: Thanks it’s been a blast. To 2014: Bring it on!

To Tell or Not To Tell? That is the Question.

I dreaded writing this post because it probably is one of the most controversial part of being a parent of a child with Sotos Syndrome. There are some people who are very adamant about not telling their children and on the flip side there are those who very much think it's a good idea to tell them. And there are good and bad to either choice. And it's just that: a choice. As a general rule, Parents typically do what they think is best for their children. Everyone has different challenges and experiences and those shape the choices they make. I respect people who choose not to tell. Every child and family are different and we each must make the INDIVIDUAL choice on what will be best for our families. Like most things in life, it's not black and white. What may be the right decision for one family might not even be feasible for the other (this is especially true for Sotos Syndrome because it affects every child differently).

So what choice are we making?

We are choosing to tell Natalie of her diagnosis.

Why?

We want to be open about her health issues mainly for two reasons.

1.       Kids know when they're different and there is power in knowledge. Natalie will always be taller than most of her peers and some things will be harder for her to get as quickly as others and I know that these things will become glaringly obvious to her when she starts school. I feel like if we start out acknowledging what her diagnosis is from an early age, making it just an ordinary, everyday part of our lives and making sure she knows that her family accepts her for who she is but EXPECTS her to tackle chalenges and succeed (even if it takes her a little longer) then she'll grow up being accepting of herself but expecting herself to perservere in whatever she chooses.
      Part of the reason I am so adamant to tell her is because I've seen the effects. Before my sister was diagnosed with dyslexia the elementary school psychologist told my mom "She's just lazy." Now my mother knew that was not the case. We're talking about a kid who would stare at a page for hours trying to understand. But when people were telling her there was nothing wrong with her and she should just "get it" it took a toll on her self esteem. She started to believe she was stupid. That just wouldn't do for our parents so they scrimped and saved and got her to one of the top testing sites for Dyslexia. They found out that she had a very severe form of it. After that it was a relief. She knew she was smart she just had to learn a different way. And I am happy to say she is a straight A student in College for Nursing. Now I know Sotos Syndrome is a far cry from dyslexia but for me the concept is the same. If you know there's a chance you'll have to learn a different way then there are more opportunities to succeed if you know what you're up against, accept it and persevere.

2.      I'm afraid that if we keep it a secret, that one day she'll find out and feel as if she should be ashamed or resent us for not telling her. Now I don't know of any parents who have EVER kept Sotos a secret because they were ashamed of their child. All the people I know who made that choice did so out of love for their child. They wanted to keep their children safe. They wanted to make sure that they weren't limited. I totally get that and fully support not limiting our children. But eventually our children find out and you have to prepare yourself for that day when it comes. Kids tend to internalize things and if they find out that they had something and it was hidden from them they tend to ask: What's wrong with me? It must be pretty bad if they kept it a secret for so long? They begin to question so many things.  Remember how it felt when you first heard the diagnosis? Now consider how your child will feel when they realize all these years this was what they had and that other people knew all along. I don't want her to ever ask herself those questions or feel like there are parts of her she should hide or are better off hidden. I want her to love herself like we all love our children, unconditionally.

What are some drawbacks to telling her?

She might try to use her diagnosis as a crutch and fake not being able to do things in order to get out of it. Unfortunately for her, I married her father and have had lots of experience calling people out for "milking it." AND it'll be hard for her to say she can't do things because she has a wonderful father with Sotos who finished school, went on to get a college degree and works very very hard in his career to provide for his family.

But once again this is an individual choice that is made on many personal factors. It's the right choice for us but that does not necessarily mean it's the right choice for everyone, nor should it be. That being said, if I didn't have my husband to be such a positive role model for our daughter and such a supportive family I don't know what choice I would have made.

How do you cope?

I had a pregnant woman ask me: I am expecting a similar situation with my son who's due at the end of the year, so I just want to ask: did you know about this while you were pregnant? How did you cope?

The quick answer: After I had the diagnosis and started looking it up, I'll admit I panicked a little. It's scary to think of the things our kids will go through. But I coped with it by looking at my daughter. Really looking at her and realizing I was blessed. She's alive and happy and she relies on me. Who's going to teach her to be strong? Who's going to teach her to shatter stereotypes? Build up her self-esteem? encourage her to stretch the limits of her diagnosis? Who's going to teach her to take life for what it is and LIVE it? If not me, who? The world is a cruel place for people who are different. I wasn't going to make it crueler by not accepting my daughter for who she is... She taught me that we may not have a choice in what happens to us in regards to our genetic make up but we have a choice in how we respond to it. Choose Happiness. That's how I coped.

******************

Choosing happiness, that's what it's really all about. At least it is for me. We can only really control one thing in our lives and that is how we react to situations. In that regards, it's all on us and we rise above or fall on our own merits. Choosing happiness isn't easy and I'll admit there are times when I find it really really really hard to do. But the alternative isn't worth the cost. What is the point in being jaded? Who does it help? Not us and certainly not our children.

Being a good parent requires you to be self-less. Not in the sense where you never go out and do things for yourself. I'm not talking about that kind of thing, I believe that moms and dads need time to relax and take a break. What I'm talking about is being self-less in how you feel about your children. I think a lot of parents get into the trap of saying "How does my child reflect on me?". If my child is different, are they going to think less of me? To that I say: STOP IT!

First rule of being a mom of a kiddo with special needs: Stop caring about how other people think of you. We've got too much on our plates already to waste time on petty stuff like that. If someone thinks less of you due to your circumstances, if someone doesn't want to be around your family or isn't accepting of people with special needs... trust me you are better off without those people in your lives. Don't pity yourself or your child, pity the poor ignorant fools who will never know the power and peace in accepting people for who they are.

But at the end  of the day, coping really isn't an issue. There's nothing to cope with when your greatest blessing is holding her arms out and calling your name.

God Bless and Take Care Guys!

Damn Right My Daughter Is Special

My daughter is 14 months old… she’s already had an EKG, Echocardiogram, MRI, genetic tests, ocular tests and physical therapy sessions every week. She has a heart condition, a growth condition, nystagmus, hypotonia… the list goes on and on but that’s not the part that matters.

The part that matters is she smiles. EVERY. DAY. She laughs, lays her little head on my shoulder, pats my back and says “awe.” And “mom”. She doesn’t do physical things quite as fast as others her age and I have no delusions. I understand that Intellectual impairment occurs frequently with Sotos Syndrome. But she knows she’s loved. She knows how to love back. That’s good enough for me. They say my daughter will probably be considered “special”… They have no idea just how special our little girl is.

When you look at my daughter you see wonder in her eyes. You see innocence. Peace. For a child who struggled to make it into to this world, spent time in the NICU and spent the first year of her life shuffled from specialist to specialist there is no anger, no self-pity. She only knows that she is our Natibug and she is loved. You look at our child and you see STRENGTH.

I know she’ll get older and things will happen. Maybe she will be able to lead a normal life in mainstream schools and enjoy a life of independence. Maybe she won’t. I don’t have a crystal ball and as much as I’d love to I can’t see my daughter’s future.  It is my greatest hope that she can grow up and be like her father. I intend to raise her with the knowledge of her diagnosis but it will be my mission in life to make sure she knows that her diagnosis does not define her. It only defines her symptoms. She will know that she’s special. But not for the reasons they say.

They say Sotos kids have a hard time verbalizing things and should be considered special needs. They’re forgetting that communication comes in other forms besides words. A kind look from a stranger. The soothing effect of classical music. A warm embrace from someone when you’re having a bad day. All of these communicate without the use of words.

As for my daughter, when she smiles at someone, even the grumpiest of people smile back. That’s the special that matters.

They say Sotos kids have a lot of health concerns of various degrees and are often expected to see multiple specialists and perhaps need interventions in special circumstances. Clearly that goes along with her having special needs.

As for my daughter, she is pricked and poked, examined and prodded and five minutes after the doctor is done she is laughing and playing with her stuffed puppy. That’s the special that matters.

At 14 months old she exercises for at least 30 minutes every day working on strengthening muscles that are being stretched out due to a rapid and constant growth of a quarter in a week. The exercises are not always something she enjoys but she does it anyways. That’s the special that matters.

Every person who has ever met her is better for it. That’s the special that matters.

They say my daughter is special.

Damn Right She Is.

And this mom wouldn’t have her any other way.

The Best Resource: A Support System

     Boy howdy have I learned the importance of having a great support system this week. I just accepted a position as a Family Support and Resource Specialist with the State's Healthy Families Program couple that with finishing up on my novel that is set (HOPEFULLY) to be out by the end of this month and trying to keep up with being a wife and mother and you get one really exhausted Mommy. But as I'm sitting here looking at my sleeping daughter and snoring husband it dawns on me how good I have it. Yeah I'm tired. Maybe I feel like circus clown trying to juggle office demands, doctor visits, final drafts, cover art, bedtime stories and countless diapers but I have my family. And they're happy. They're relatively healthy and although my life sounds a little hectic I feel as if it's calmed down a bit and I've hit my stride. Stride and all though I know that I wouldn't be anywhere close to holding it all together if it wasn't for my support system who just so happen to be my family.

     Having people there that you trust that you can lean on is important for any mom, but especially so for us Sotos Moms. Having those kind of people in our lives help us get through the struggles and share in the little joys and big accomplishments. I'm woman enough to admit that if it wasn't for mine and Garret's families I would be completely frazzled. With a child with Sotos it's easy to let your mind go down the "what if" road. What if kids make fun of her b/c of the way she walks, talks or looks? What if the next doctor visit doesn't go so well? What if her MRI or EKG shows something bad?... And all of these What ifs are rational for us Sotos moms. All moms go down the What if train but the difference for us is that most of our "What ifs" turn into "How do we handle this now." My how do I handle it approach centers around writing things out, discussing things with my family and leaning on them when things turn out to be a little more than I can handle at the time. But I often worry about how other women without that kind of support system do it. Don't let anyone fool you, It takes strength to be a mother but it takes a special kind of strength to do it all on your own.

    Thankfully though, there are places to go if you do find yourself without a support system.

CHURCH/MASQUE/SYNAGOGUE/OTHER PLACES OF WORSHIP: For those of you who are religious and already have a church family this might be an untapped resource for you. These people already share something that's pretty fundamental in your life: your faith. Aside from offering prayer and spiritual guidance they often have access to a myriad of resources and people to talk to if you find yourself bogged down by the demands of being a parent. A HUGE benefit too is that often they have youth groups where our children can be involved. These programs are often smaller peer groups than what they get in school so it might be easier for our children and other children to get to know and form friendships outside of school. More often than not they have women's groups too where we can kind of expand our social circle and have people that we trust to talk to about things.
So what if I'm not religious how would this help me? You would be amazed at the amount of resources spiritual leaders have out in the community that is secular to the church. You may not want to participate in church activities but they can often point you in the right direction or set you up with some of the programs in your community that you wouldn't have known about otherwise.

COMMUNITY RESOURCES: Programs like first steps offer support when dealing with a child's particular delay. From my experience they have been wonderful about finding answers to any questions I have and I truly feel like our physical therapist really cares about our daughter and her development. But outside of those types of resources that are often brought up to us by our doctors there are programs made by our libraries, universities and community centers that often go undetected. I know around where I live the library offers language classes, story time with your children (THIS IS AWESOME, because not only does it give you a chance to meet with other moms and their kids, but reading to your child whether they understand it or not is HUGE for their development and bonding) and that's just the tip of the iceberg Universities often hold events and things for people outside of their student body and community centers almost always offer classes and social events where you can meet people.

SUPPORT GROUPS: I cannot sing the praises of being a member of a support group enough. Being a mom of a child with special needs is not always easy. And I know for me, that I expect more out of myself than I do from other moms. I have an overwhelming need to protect my daughter and raise her to be a happy little girl with a normal childhood outside of all the doctors and specialists. But sometimes, sometimes things get really hard. I worry about things that I can't talk to my friends about because I know there's things that are normal for kids and then there are things that are normal for children with Sotos and more often than not what's normal for one isn't normal for the other. That's where being a member of a support group comes in handy. Now being in a support group doesn't mean I love my child any less or that I can't handle the stress of being a mom what it does mean is that I love my child and I recognize that being around and talking to parents of children with Sotos is an invaluable resource. There are not many of us out there and very rarely do doctors see children with that particular diagnosis. Having a community of parents going through the same thing can be beneficial to our doctors as well. We have seasoned parents who have raised children with Sotos Syndrome who can give us young pups some tips of the trade. Then there's us young pups who can ask for advice without the fear of being judged. A lot of these support groups can be found on facebook or on various internet sites. If you're on the fence about whether or not you join one, I recommend you do. If you don't like it you can always quit.

Special Needs Kids Are Just Lazy

Ok I'm going to have a mom on a warpath moment. Nothing makes me go from my usual sweet and polite country girl self to a complete and total, albeit justifiable b***h faster than when some ignorant fool says something derogatory about people with special needs. There is an injustice here that needs to stop. When people make fun of how a child walks, talks, looks, etc. or when they say things like "Special needs kids are just lazy." I have an undeniable need to want to slap them.

When did we as a society get so intolerant? When did we start to lack empathy? It's called a disability for a reason. Do they truly not realize that the ability to learn quickly is a luxury not everyone has? I think on some level they do realize that, but they choose to ignore it. They choose to ignore it because it's easier to be swept away in the current of intolerance than to fight through the ignorance to stand on the solid ground that is understanding and acceptance.

I myself do not have a physical or learning disability but I have a father, cousin, sister, husband and child who do so I think I have it on pretty good authority that they are NOT lazy. They are the furthest thing from it. Every accomplishment they make, they earned. And they earned it the hard way by pushing for it, working towards it, never giving up. There are very few "normal" people that I've met with the same kind of drive and determination as my "learning and physically disabled" family members. I was raised from an early age to know that my intelligence is a gift, just as my father's ability to make anything with machinery was a gift, my brother's athletic ability was a gift. Every one of us has a gift and these gifts are all important, regardless of what the world may tell you.

For those of you who still think Special Needs kids are just lazy I offer you this special needs challenge:

1. Find an article in a language that is foreign to you. Now translate (No using an online translator)and understand it in 5 minutes or less.

...Can you do it? Good for you. Those of you who couldn't: Congrats you just got a teeny tiny taste of what it's like to have dyslexia. People with dyslexia have to translate every word, every letter, every time. The letters in words move around on the paper, similarly shaped letters like b's and d's are pretty much a guessing game, sometimes the letters are allputtogetherinthesamelinewhichmakesitincrediblyhardtodecipher, otreh imest eyth rea xedmi gotoreh (other times they are mixed together). Not only do they have to rearrange all those letters they have retain what they've read and are expected to do all of that at the same pace as students without dyslexia. It would be comparable to someone who never spoke German a day in their life being able to read and understand an article at the same pace as someone whose native tongue is German. And yet these kids DO decipher the words. they DO the assignments. They DO find ways to be more efficient and successful. So for those of you who couldn't complete the challenge in 5 minutes or less... don't worry too much about it you're just lazy.

2. Take a roll of duct tape. Tape your legs together. Now continue to do your daily routine to the extent that you usually do. Make sure you get everywhere on time.

...Can you do it? Awesome...you should probably get some kind of award for fastest learning curve in arm walking! Couldn't do it? Congrats you just got a teeny tiny taste of what it's like to not have the use of your legs. Simple things like opening doors, reaching for food in the lunch line, getting out of the way from people walking towards you, taking a shower and changing your clothes all take an exorbitant amount of effort. Couldn't maintain your routine to the extent that you usually could... don't worry too much about it you're just lazy. Unravel the duct tape from your legs and carry on just do so with the knowledge that some people can't simply unroll duct tape and walk out of the room.

3. Cut a pair of yardsticks so that they end up going from your feet to your mid-thigh. Now duct tape those to your legs. Now walk around school, work, the neighborhood and make sure everything you normally do is done efficiently, to the extent of what you normally do, and at the same pace as everyone else around you.

...Can you do it? Impressive, hats off to ya man. Couldn't do it? Congrats you just got a teeny tiny taste of what it's like to have Spina Bifida and have to use leg braces to get around. Have a hard time getting around, doing normal every day things? Had a hard time with people giving you strange looks and trying to keep up with everything and everyone around you? Don't worry too much about it, you're just lazy.


..... now I could go on and on with more challenges but I'm pretty sure I've made my point. So the next time you see a child struggling to understand things or one that might not be as quick as others remember, you don't know their story. You don't know what struggles they may have. So don't judge others by the label "Learning Disabled". It's easy to call someone lazy when the alternative is to actually try to understand the reality of their situation. The time is now to overcome this level of under-reported and sadly too often accepted ignorance. The time is now.

Just Dignosed?: A mom's guide to getting through it

So you've just got the diagnosis. Not sure where to go or what to do next? Well I've put together a handy-dandy guide of little tips that will make this process go a little smoother...

1. Take a moment to let the situation sink in, throw yourself a mini pity party if you need to... now get over it.
Preferably as soon as possible because you have a child who needs you. And they need you to be strong. They need you to be advocates for their health. Now more than ever you must show them how important they are to you. How they are valued, cherished, special and loved. Too often because of the symptoms of  Sotos Syndrome our children have to deal with bullying and as a result suffer from poor self-esteem. We as parents have to build their confidence up. Think of it as armor so that when bad things happen they can rely on the parental foundation you set up for them. You can't protect them from everything and everyone but you'd be amazed at what a close relationship with their parents can do for their self-esteem.

2. Realize you are NOT alone.
With a diagnosis as rare as Sotos Syndrome it's easy to think that nobody is going to "get it". I was one of those people who thought that but then I started researching. I joined support groups for parents and people living with Sotos Syndrome and I got to talk to people around the globe. People with children just like mine. Adults with Sotos living a life much like my husband. We shared pictures and advice. Talked about milestones reached and prayed for each other when different medical stuff was needed. It didn't take long to realize my family was not alone. Quite the opposite. We were part of community. A community that transcended countries, races, religions, political parties and economic statuses. We were all parents joined by the same thing: Love for our children. There was a genuine support there and we all cared about each other. And in that lies the blessing of Sotos Syndrome: the bringing together of so many people we would have never known otherwise to help celebrate our children and our lives.

3. Invest in a notebook and daily agenda.
I'll tell you now you are going to need it. There is going to be lots of doctors, lots of appointments, perhaps lots of medications, medical bills, insurance claims and you are going to need to be organized. Our children often see lots of different specialists at different locations.I've found that writing everything down helps because it is very easy to get overwhelmed otherwise.

4. Prepare yourself for the great insurance fight.
I don't know about other countries, but in the States our insurance is a huge, but necessary hassle. My biggest suggestion to you is to call your insurance company every time you get a bill. Call on everything. Hospitals are notorious for overcharging, charging exorbitant amounts of money for little things like aspirins, or honest mistakes. Study your insurance plan like you would an exam and then talk to the hospitals about how to go about paying for services that aren't covered by your provider. Find out which hospitals are the most flexible with payment plans and then, if feasible take your children there. Unfortunately, our children often have a lot of health concerns and doctor bills can add up quickly. So the best course of action is to be proactive... trust me, I learned the hard way.

5. Decide how, who, when and if you are going to tell your child or others about Sotos Syndrome.
This is an intensely personal decision and you must weigh the benefits and consequences of letting people and your child know about Sotos Syndrome on your own. Some parents of higher functioning Sotos children choose not to let their children know. My in-laws did that with my husband and I must say there is something to be said for that approach since my husband is an amazing byproduct of that approach. He's got a college degree, great job and a family that adores him. That being said I will be telling Natalie of her condition. But I will not let her be labeled by it. She is Natalie first, our beautiful daughter 2nd, a whole lot of other things in between, and a Sotos child after that. Ultimately the choice is yours.

6. Get your child involved in early intervention programs as soon as possible.
Once again this is a personal decision. However I will say from experience EVERY resource you can get your child helps. I have my daughter involved in a program called First Steps where a physical therapist comes out every week and works with Natalie on her gross motor delays. Some people elect not to accept early intervention programs for various reasons (some times more than others because they don't want to believe there is anything that needs help- I was one of those people too until I agreed to enroll Natalie in first steps and now I can't deny the tremendous help it has been to Natalie's development). I learned I had to suck it up realize that my daughter needed help. Help I couldn't give her on my own. My daughters health and development is more important than my pride in being a parent who knew all about my child and could fix everything on my own.

7. Find the right doctors.
You're going to be seeing them a lot. Make sure they are people you can be comfortable around and that they know what they're doing and that they know about your child. They need to be the type who are proactive and well versed in your child's needs.

8. Enjoy life
You only get one chance to be a parent to your child. One chance to watch them grow. Don't blow it by being sorry for yourself, your child or your situation. Every minute you spend wallowing in self pity, worry or doubt is a minute you could have spent making your child smile. And let me tell you, there is nothing like a child's smile...You can break down later but this time right now belongs to your children so let them see your strength and rely on it. Go places, do things. They may or may not be able to do all the things you used to as a child but don't let that stop you or them from LIVING. Play games together, go on walks, visit zoos, talk about things that interest them, go on vacations. Surround yourself with people that you love that love you and your child back and cherish all the little things that make your life unique. Remember happiness is a choice and children have a knack of watching all the choices you make. So make sure the choices you make are the ones you wouldn't mind them imitating.

What the hell is Sotos Syndrome?

Not too long after the MRI I got a call from my mother-in-law. She informed me that when my husband was about 1 years old he was thought to have had Sotos Syndrome by some specialists. But that they had never told him because they didn't want him to grow up thinking he was limited in what he could achieve. They raised him like all their other boys and never felt the need to tell him about what he was thought to have had. Although I am choosing to let Natalie know about her diagnosis I must admit that how they raised Garret worked. He is an amazing man and father with a college degree and a good job. After watching Natalie go through the things he went through his parents decided to let us know about Sotos Syndrome so we could be prepared and tell our doctors.

I had never heard of Sotos Syndrome before. No one I knew had heard of Sotos Syndrome either. So I did what every parent should never do and looked it up on the internet. Some of the things said about Sotos Syndrome scared the stuffing out of me but then other things started to make sense:
large head.........................................check
very tall.............................................check
Slightly protruding forehead................check
triangular face &nails..........................check
underdeveloped nose &nasal bridge....check
nystagmus..........................................check
enlarged ventricles..............................check
gross motor delay...............................check
constipation........................................check
heart concerns....................................check
prefers her routine...............................check
difficult delivery...................................check
jaundice..............................................check
hypotonia...........................................check


Now if you're reading this, you are probably generally aware of what Sotos Syndrome is. For those of you who don't know I'll give you a general explanation:

Sotos Syndrome is also refered to as Cerebral Gigantism and is extremely rare. It most often occurs sporadically (neither parent has the Sotos Gene) but for people with Sotos Syndrome (like my husband) their chance of having a child with Sotos Syndrome is 50/50. One thing to remember is that range of severity is pretty vast and your child may have some of the symptoms but not others and the degree of which those symptoms occur varies as well. The BIG HUGE thing to remember that Sotos Syndrome itself is not life threatening. There is no cure but doctors take more of a treat the symptoms kind of approach. There is often a learning delay associated with Sotos Syndrome ranging from Severe Mental Retardation to a Mild learning disability (around the same level as someone with dyslexia). Those with the milder form of Sotos go on to lead normal lives, be in mainstream classes, self-sufficient, with families and jobs. And another huge thing to remember is that Sotos Syndrome gets better with age! By the time they are adults things begin to stabilize health wise (this is often contributed to the fact that they have finally quit growing by the time they reached adulthood and a lot of their symptoms occur as a result of their rapid growth- it's tough for a little body to keep up with a growth spurt of a quarter inch a week)

A list of symptoms associated with Sotos Syndrome include:
rapid growth
pointed chin
downward slanting eyes
ADHD
Hypoglycemia
Seizures
phobias
tantrums
compulsions
impulsive behaviors
speech delays
gross motor delays ( like with sitting, crawling and standing in early development)
varying degrees of mental abilities
Scoliosis
Heart defects
Kidney defects
Constipation
Jaundice
a VERY slight increase in developing cancer in childhood
hearing and/or vision problems
hypotonia
clumsiness
underdeveloped nose and/or nasal bridge
Large head size
Extra benign cerebral fluid
Autism

Please keep in mind that if your child is diagnosed with Sotos Syndrome they may have some or most of these symptoms and that the degree in which these symptoms occur varies with each child.

Something's Not Quite Right

"She seems like she's a happy little thing but there's a few things that concern me." ...
...
....
...... It was her 6 month appointment and the doctor had already started adding a list of things she was concerned about. The list was growing with each passing appointment and I wanted to scream: She's fine, she's happy, she smiles. There's NOTHING wrong with my baby. But in the back of my mind I knew that in some ways she was different from my friends' little ones who were sitting up and rolling. She was MUCH taller than the little one's her age but her dad was every bit 6 foot 6. It just seemed to take her awhile to learn some gross motor things but surely it wasn't that big of a deal. Kids grow at different rates, right? I was all about just letting the doctor ramble on about her concerns and not listening because I wanted to believe she was a normal baby, just a little tall for her age until the doctor said "and this might be caused by a tumor behind the eye. I want to send you to a specialist and have an MRI scheduled."

 Now when you are a mom, one of the worst things you can hear is that your child might have a tumor. It was hard for me to not break down right there because this wasn't the first time I had heard the word tumor that week. My husband had went in to have a routine vasectomy (We had a VERY hard time getting pregnant and delivering Natalie so we had made the decision to just have one biological child and adopt the rest) and during the vasectomy they had discovered what appeared to be a testicular tumor and would have to go under the knife a second time to have it removed. My family's health was falling apart around me and I could no longer deny that there was something not quite right. So we ended up seeing an ophthalmologist, who quickly diagnosed Natalie with a Nystagmus and sent us on our way to the hospital to get an MRI. 

I'll just say it: I HATE hospitals. They are sterile, cold and depressing and I have too many memories of sleeping in waiting rooms and praying in the chapel that loved ones will pull through. The thought of my little 6 month old already having to deal with doctors and machines pissed me off. The thought of sitting in that waiting room waiting to hear news about my child pissed me off even more. But more than being pissed off I was Scared. Mind numbingly scared. Natalie is the most cherished, loved and adored person of mine and my husband's entire life and we fought like hell to get her here. She was going to stay here, be healthy, live a long happy successful life and like hell if anyone told us otherwise.

A few weeks later we got the results of the MRI. NO TUMOR! We were ecstatic about that but then the doctor kept talking and started adding to the list of new concerns... there seemed to be a little excess fluid on the brain, some white matter loss, a very small bleed on the brain (they were certain that would not be a problem and was caused by the rough delivery of our daughter) and enlarged ventricles... white matter loss? Enlarged Ventricles? and a lot of other medical mumbo jumbo thrown in quickly turned my elation over the lack of a tumor to uneasy confusion over the host of new issues this doctor had brought up. What did this mean for my daughter? Was she ok? ... the ophthalmologist while well versed in matters of the eye was less than useless when it came to the brain so he sent us to the next specialist: a neurologist in the children's hospital.