Take that, Syndrome!

My brain is mush. Really, I shouldn't be blogging in this state.

Sometimes, parenting a child with special needs doesn't feel that special. Sometimes it is just plain hard and really, really tiring.

To clarify, everything about Carter is wonderful. Everything about Noonan Syndrome, is not. You know the bad guy on The Incredibles? His name is Syndrome. Some days it kind of hurts my feelings that the bad guy's name is Syndrome, but today it makes sense to me.

What is bringing on all of this emotion? A week filled with Syndrome-related crudiness. On Monday, Carter got fitted for new SMOs (orthotics for his sweet little crooked little feet). For some reason, I am out of sorts the week of Carter getting new SMOs. Why, you say, it's no big deal compared to his heart problems and life threatening allergies! Well, guess what? It is a big deal. It is a big deal that it is hard for him to walk. It is a big deal that he watches his classmates jump off the slide at the park. It is a big deal that at age six he would prefer a stroller to walking any distance and he can't play on the soccer team and he cries because his legs hurt.

Today, Carter went to the eye doctor because his physical therapist noticed he has a lazy eye. I thought I'd be the proactive mom and get this checked out even though I was sure everything was fine. Well, guess what? It wasn't fine. He is legally blind (and worse in the non-lazy eye) and has no depth perception and needs surgery to correct the lazy eye and even that won't fix it because of the shape of his skull making his eyes not able to line up. Not so much what I was expecting to hear.

You might think "how did she not know he couldn't see?". One answer- kids are great at over-compensating so she wouldn't know. Another answer- she's been a little busy between the seizures, hearing aids, orthotics, pacemaker, endocrinology visits, immune system suppression issues, physical therapy, OT, PT, asthma, IEP meetings and allergy stuff.

If you know me at all, you know I am crazy in love with Carter (who isn't?). Most days I handle all the syndrome stuff in stride and there are weeks it hardly affects us. Most days I rise to the challenge of it all and even take pride in showing other people how truly great life is with a child with special needs in your life. But in the spirit of authenticity, I needed you to know that I have hard days, too.

And you know the amazing part? Carter is rarely down. And when he is, he is over it quickly. And when I see that smile, especially the one that comes after the storm, I know I can smile, too.

And you know what else? Carter is WAY more Dash than Syndrome.

LAPS of Love Update

Thank you, Freeman Fourth Graders and Teachers!

You made LAPS of Love a huge success! Together, these students raised $2100. That will go a long way to further the education of students in Burkina Faso. More than that, you showed students in need that you care about them and that they are worthy of an education.

Radical

If this video doesn't get your heart pumping, nothing will!

Radical by David Platt from Taylor Robinson on Vimeo.

Adoption Low- THE POUT

THE POUT has descended.

Are you an adoptive parent? Then you KNOW what I am talking about. I don't think I've ever met an adoptive parent who has not encountered THE POUT.

For those of you unfamiliar with THE POUT, let me attempt to describe it.

What THE POUT looks like:

Child presents with mouth firmly shut with lower lip protruding. Often, arms are crossed. Head, may be down on tabletop or cocked to the side. Eyes emitting either look of death at parent, or oddly vacant with zero eye contact. In younger children, tummy may be pushed forward. In tween, hands on hips, hips forward, or arms crossed, hips forward. Feet are firmly planted to the floor.

Origin:

Child's expectation of how adoptive parent should or should not respond to their desire (desire may be spoken or unspoken) has not been met in part, or in full.

What THE POUT is meant to communicate:

You brought me all the way from _________ (fill in country of origin) for THIS?

Psychological effect on the adoptive parent:

Irritability, helplessness, loss of rationality. THE POUT may cause all prior adoption training to go out the window.

Suggested Treatment:

During seasons of chronic POUTing, primary caregiver must take regular breaks for times of refreshment with whatever fills you up, i.e., coffee with friends, exercise, Bible study. It also helps if you can find the humor in the midst of a particularly potent POUT. Find a friend who knows the POUT and can talk you down. You may not want to hear this, but if you take the time to find out what is fueling THE POUT, you will, in time, eliminate THE POUT. Remember, there is more to THE POUT than meets the eye. It represents something- grief, loss of control, fear, etc. Good news- THE POUT is NOT fatal to child or parent (though at times it feels like it might be!).

Heart Update

After consulting with several cardiologists, it looks like Therese's heart will be fixed via open-heart surgery. We had hoped the coarctation could be fixed through a catheter procedure, but after careful evaluation, that does not seem to be the way to go. Using the catheter would require two or more procedures and still might not fix the problem. We like the idea of fixing the problem once and for all, which should be the case if we go the open-heart route.

We will most likely hear from the surgeon this week, set up the consultation and get a date on the books for the procedure. Therese will have the same surgeon as Carter had for his surgeries, but the surgery will occur at Hope Children's Hospital (part of Christ Hospital) instead of Lutheran General. We were looking forward to seeing our old buddies at Lutheran and taking comfort that we know that hospital like the back of our hand, but Hope is where they do this particular surgery.

We don't know yet if Therese's surgery will be in February, but that would be another cool heart connection if that turns out to be the case. You see, four years ago this Valentine's Day, we brought Carter home from the hospital for the last time after six heart surgeries.

Four years ago I would have NEVER predicted that this Valentine's Day we would be celebrating four hospital free years (for heart surgery reasons anyway!), but also LAPS of Love. My two fourth grade daughters and their classmates walking the school yard together to raise money for a new classroom and supplies in Burkina Faso. SO much has happened in these four years. The number of our children has doubled, as well as the size of our hearts!

L.A.P.S. of Love

I couldn't be more excited to share this news with you!

The Fourth Grade students at Freeman School will be celebrating Valentine's Day by sharing their love with students in Burkina Faso, West Africa, by hosting L.A.P.S. for Love. L.A.P.S. for Love stands for Let's All Provide Supplies. The students will be walking four laps around their school yard to raise funds to build another classroom to Therese's former school in Yako, Burkina Faso.

Some items they are hoping to provide include:

A desk shared by two students- $16

Text book containing math, reading, science and history- $24

Temporary wall made of Seiko (woven grass)- $100

Teacher salary for one month- $120

You can sponsor a student per lap, or a flat out donation. If you'd like to contribute, leave a comment on my blog or email me at esolgos@gmail.com

The children in the photo are Therese's former classmates. Let's show them that we care!

Note: Parents of Freeman fourth graders- don't worry, you didn't miss anything. You'll be getting all the info soon!

A Wild and Crazy Family

How fun is this? Taught my girl to knit! She picked the orange- nice and cheery for this time of year!