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.