Momma Bear Growls Again

Here's the thing.

When you have a child with special needs, you realize that people say a lot of stupid things.  No judgement here... I'm quite sure I was probably once one of them.  Not that I ever put my foot in my mouth or offend anyone.  Ever.  Ahem.

However, there are a few that say things that I'm pretty sure I never would have said.  And those things can make the blood of mother of a special needs child boil faster than anything you can imagine. 

Back by popular demand, may I please present things you should not say to the parent of a special-needs child.

1.  "Maybe he/she will grow out of it."

I'm sure that is meant to be a consolation.  However, it really is quite insulting.  We spend a lot of time with experts in the field... and if they really thought it was something our child we just grow out of, we probably wouldn't be at the therapy office or CVS nearly so often. 

2.  "What is wrong with your child?"

This one really makes me want to respond... what is wrong with you?!  Everyone is different... a child with special needs is just a little extra different.  

3.  "Have you tried..."

This phrase is usually followed by recommendations of all sorts.  Special diets, vitamins, videos, therapies, massage, herbs.... you name it, they recommend it.  Lets just leave it to the specialists, por favor. 

4.  "Why do you need an aide?"

Uhm, because we have to puree food, clean our house before the therapists come over, research a compounding pharmacy, call the out-of-town hospital, check weight gain, wash laundry that has been vomited on, administer multiple meds, wash syringes, attend therapy, change feeding tube bags, go to the lab to have blood drawn, call the school about the IEP, talk to the doctor that returned the call, and its only just noon.  And did I mention we are also keeping up with a "normal" child and spouse as well?  So we may as well add run to the store, make cookies for the PTA meeting, and make sure you don't miss the bus to that list as well.  Did I forget anything?!

5.  "Let me know if I can do anything."

This seems like a nice gesture, but its kind of a cop-out.  We are so busy and worn out and probably too darn proud to call you and say, "Hey, I'd really like you to babysit my normal kid" or "We could really use dinner."  So how about you just call and say, "I made an extra casserole.  What time will you be home this afternoon for me to run it by?"  or  "We are headed to McDonalds Playplace... can I swing by and pick up your other child?" 

6.  "He/she doesn't look like he/she has special needs."

I'm not really sure what all of the rare syndromes and abnormalities look like combined together... but whatever.  I still trust the experts on this one. 

7.  "Aren't you glad you get to go home and get back to normal now?"

People have said this to me as we are leaving the hospital.  Again, I know that sometimes people really are trying to be nice.  But normal in our house is just a setting on the dryer.  For any confusion, please refer to #4 above.

8.  "Are his/her glasses real?"

Now this one wasn't said to me personally but I heard it said to a friend whose child wears glasses for severe vision impairment.  I mean really?  Who puts fake glasses on a toddler?  Yes, genius, they're real.

9.  "I'm sure she'll catch up soon and one day nobody will know anything is wrong." 

I'm sure one day America will be out of debt too.  

And that there will be world peace.

And we'll all hold hands.

And sing.  And skip over the rainbows.  With unicorns. 

10.  "How old is she?"  "She is two."  "Ohhhh."

Yeah, that is just awkward.  If you notice a kid doesn't talk or walk very well or do anything independently but seems to be the size where they should, you are better off not asking how old the child is unless you have a response of some sort prepared.  Bless your heart. 

That's all for this episode.  The way this week has gone...stay tuned for next week!

Children

 "The soul is healed by being with children."  - English Proverb

 

“Your children are the greatest gift God will give to you, and their souls the heaviest responsibility He will place in your hands. Take time with them, teach them to have faith in God. Be a person in whom they can have faith. When you are old, nothing else you've done will have mattered as much.”

"Children see magic because they look for it."  - Christopher Moore

Silly Stylish Sassy Soccer... Star?

 First order of business, my camera has been repaired.  Two hundred dollars and five long weeks later... it is back in my hands.  World, prepare to be inundated with blog posts now. 

[You're welcome?  I'm sorry?  Whichever is applicable.]

Savannah decided to play soccer this year for the first time.  

She's having a blast, and if anyone needs free entertainment for two hours per week, call me.

 There are times that she appears to be doing well and I think that she may surpass her mother's athletic skills (wouldn't take a whole lot) and then there are other times...

...when I look up to see things like this...

...and I'm just not so sure.

 I guess somersaults, silly faces, and bear hugs are all a part of the biddy soccer league.

As is socializing.  The entire game.

Then there are other times she looks like a legit soccer star.

I guess the potential remains to be seen.

Until then, Go Tunas!

Stories of New Kitchens

Once upon a time, there was a house.

It was quite charming and not in need of much work.

After living in the ghetto and remodeling the entire former house, 

the royal family was quite content with the newer charming house.

Except the queen really hated the kitchen.

The cabinets were very small, with wasted space above them.  And they were constructed out of three different woods.  And nailed and caulked to the walls haphazardly.  And the microwave was not centered over the oven.  And there was a bunch of wasted space in an area that was too small to be an eat-in area as well.  As if the person who constructed the kitchen was highly intoxicated.  Hopefully.

Lucky for the queen, the king just so happened to have been a carpenter in his former life. 

So he agreed to give the queen a new kitchen.

So he tore out the kitchen, and began a remodel.

And then went to the academy, and then tore his ACL and needed surgery, and then...

But I digress.

The king finished the cabinets this past weekend.  And the queen is very happy.

All is well in the kingdom. 

Except that the queen's camera got knocked onto the ground by a princess and thus is in the repair shop, so she can only show off her new kitchen with phone photos.  

Which incidentally explains the lack of recent blog posts as well. 

Alas, I present... the kitchen.

 

 

Moms and Dads

Mom and Dad were watching TV when Mom said, "I'm tired, and it's getting late. I think I'll go to bed."

She went to the kitchen to make sandwiches for the next day's lunches, rinsed out the popcorn bowls, took meat out of the freezer for supper the following evening, checked the cereal box levels, filled the sugar container, put spoons and bowls on the table and started the coffee pot for brewing the next morning. She then put some wet clothes into the dryer, put a load of clothes into the wash, ironed a shirt and secured a loose button. She picked up the newspapers strewn on the floor, picked up the game pieces left on the table and put the telephone book back into the drawer. She watered the plants, emptied a wastebasket and hung up a towel to dry. She yawned and stretched and headed for the bedroom. She stopped by the desk and wrote a note to the teacher, counted out some cash for the field trip, and pulled a textbook out from hiding under the chair. She signed a birthday card for a friend, addressed and stamped the envelope and wrote a quick note for the grocery store. She put both near her purse. Mom then cleaned her face, put on moisturizer, brushed and flossed her teeth and trimmed her nails.

Hubby called, "I thought you were going to bed."
"I'm on my way," she said.

She put some water into the dog's dish and put the cat outside, then made sure the doors were locked. She looked in on each of the kids and turned out a bedside lamp, hung up a shirt, threw some dirty socks in the hamper, and had a brief conversation with the one up still doing homework. In her own room, she set the alarm, laid out clothing for the next day, straightened up the shoe rack. She added three things to her list of things to do for tomorrow.

About that time, the hubby turned off the TV and announced to no one in particular "I'm going to bed," and he did.

Today.

It is difficult when you think you are at the end of one road, and in a matter of minutes you find out that you are on an entirely difficult road....and you are only just starting out.

How do you reorient yourself from reading epilepsy surgery procedures one minute to researching mitochondrial disease the next?

Its like diving underwater and getting disoriented, and squinting to figure out where the light is coming from so that you can find the way up.

We spent a week in the Children's Hospital doing pre-surgical testing on the Epilepsy Monitoring Unit.  They did an in depth MRI, and 72 hours of video EEG.  It was quite intense, but Brooklyn tolerated it with a smile, as usual.   As I read the manual on epilepsy surgery, I found myself wondering how I would be able to handle brain surgery, swelling, medically-induced coma, a feeding tube, a central line, and the intensive care unit at the same time.  While Brookie has been through most of those things separately, being hit with them all at once would be tremendously intense.

 

However, after reviewing the data, the surgery team came in to talk to us and inform us that epilepsy surgery is not a good option for Brooklyn.  They feel like her issues do not stem from a lesion in the brain, but rather that she has a full-system issue, probably a metabolic or mitochondrial disorder.  Her "seizures" did not generate electrical activity in the brain, but rather are believed to be moments when her body "crashes" and her brain temporarily shuts down due to lack of energy.

This was both a blessing and a curse.  We were thrilled that we did not have to make the decision to put her through neurosurgery, but were frustrated that when we were so close to answers that we are really back at square one.

Mitochondrial disease is extremely rare.  

It is a disease of the mitochondria, which are the energy producers for cells.

If they don't work right and you don't get enough energy, certain areas of your body can suffer.

It is hard to diagnose.  It is progressive, and can be fatal.  

It can effect multiple body systems, or just one.

Some kids work toward a diagnosis for more than a decade.  It can be illusive.

We are so thankful that we have been blessed to work with some of the best doctors in the nation and that we have a team of professionals dedicated to help us to help Brooklyn.

It is frustrating to be chasing a diagnosis, and at times my biggest fear is that we won't ever know what is "wrong" with our girl.  I keep thinking that if I just figure it out, then maybe we can help her more.  So I spend hours reading books and searching Google.  I study her lab values and make phone calls to various experts.  It is exhausting, and I really just would give about anything for an answer.

But we aren't always granted the full picture.  We are given today, and we are to live it to the fullest.

Perhaps our little miracle girl is here reminding us that none of us are guaranteed tomorrow...and that we don't have to know everything... but we are given just enough.

We've been given today.

To learn more about mitochondrial disease, you can visit www.umdf.org

Pontoon

Back this hitch up into the water.  Untie all the cables and rope.

Step on to the astro turf.  Get yourself a coozie.  Let's go.

Who said anything about skiing?

Floatin' is all I wanna do.

 You can climb the ladder.

Just don't rock the boat while I barbecue.

On the pontoon.  Making waves and catching rays up on the roof.

Jumpin' off the back, don't act like you don't want to.

Party in slow motion.

Out here in the open...mmmm....motorboatin'. 

Five miles an hour with aluminum sides...

Wood paneling and a water slide...

Can't beat the heat so let's take a ride...

 ...on the pontoon.