Thursday, May 27, 2010

How Do You Solve a Problem Like Isaiah?

Zay and I spent a good part of today with Team Genetics. To put it into perspective, he devoured 1 snack bag each of (1) Cheerios, (2) Wheat Thins, and (3) Gold Fish during the visit. And that was after a full oatmeal/applesauce breakfast.

It was a thorough visit generated from a referral per Zay's neurologist. He finally obtained Isaiah's old MRI images. Based on the comparisons with the one from last month, Team Neurology concluded there were significant changes in the cysts in Zay's brain ~ suggesting a condition known as periventricular leukomalacia. It correlates with his cerebral palsy and developmental delays. Basically, this could have been caused by lack of oxygen during the pregnancy, at or around his birth. Since he had low APGAR scores, it's definitely a possibility.

Just to cover all bases, they want to perform a specialized MRI called a "spectroscopy" to rule out any metabolic disorders. Dr. L, the geneticist, also asked permission to test Isaiah for the rare Lesch-Nyhan syndrome, which she feels strongly will come back negative (do yourself a huge favor and don't Google it...) She's only known 1 other patient whose results came back positive--a little boy with some of Isaiah's same issues. I only agreed to the test because if Isaiah has it, then I am a carrier. That could have implications for the male children of Savannah and Mariah. Gotta love the gift that keeps on giving, right?

I'm not freaking out at this point. It wouldn't help anyway. What I am doing is focusing on how blessed we are to have Isaiah in our lives. Whether he lives a few more years or outlives all of us, it won't change the significance of his life. Now, I'd be lying if I said I never thought about losing him. My first experience with those thoughts was during the pregnancy when they found the trouble with his heart. I felt so helpless. But I took comfort in knowing that God was in control.

And He is in control now.

So, I guess you don't solve a problem like Isaiah. You just pray without ceasing, believe in miracles, and love that little guy with all your might. With a smile like his, it's hard not to.

Tuesday, May 25, 2010

Schmoozin Cuzzins

The Hilton hotel in downtown Washington, D.C., was the scene of quite the reunion yesterday afternoon. A reunion almost a year in the making.

My beloved cousin, Michele, was receiving an award at the Medical Library Association luncheon and I was delighted to be her honored guest. A gourmet meal I didn't have to cook, intelligent adult conversation, and I got to get all dolled up? Felt like I won an award!

I love you, Michele. You inspire me.

Friday, May 21, 2010

This Week: The Good, the Bad, the Olympic

Good news ~I am on the mend. Feeling like myself and getting lots accomplished this week. Bad news? Isaiah tested positive for strep this week. He's no longer considered "contagious", but his pediatrican prescribed a 10-day course of antibiotics. Apparently that strep is some nasty stuff left untreated.

Zay seems no worse for the wear these days. In fact, he won an Olympic medal yesterday. It was his school's annual Special Olympics "Challenge Day". It is a chance for the special needs kids to show off their skills under the direction and guidance of the physical therapist and adaptive physical education teacher. When we saw Isaiah's name on the program under the slalom event, I knew things were going to get interesting.

When Isaiah shot out of the gate with the biggest grin on his face, I didn't think I'd be able to hold the camera steady enough to photograph anything. All bets were off when the group of assembled pre-K and kindergarteners from the the "regular" classrooms started chanting "I-ZAY-AH!" while shaking their blue and gold pom-pons. I thought my heart might burst. My baby boy being cheered, not jeered, by his peers.

Serpentine! Serpentine!

And to top if off, Daddy was right there at the finish line to reward him for all of his hard work and determination.

We are officially moved into our new place, which is practically right around the corner from my mom. (After living overseas for 7 years and on the West Coast for almost 3, our families aren't getting rid of us that easily. If we could have afforded one of the houses that are for sale on her street, we'd be all over it). We found a great older house with 5 bedrooms, 3 baths, and one sweet Man Cave. The kids were sold on the ginormous backyard.

We are still stumbling over boxes, but it's already feeling like home.

Thursday, May 13, 2010

Wife Swab

After getting Mariah and Isaiah off to school on Monday morning, I headed over to Walmart. Savannah wasn't feeling well, so I let her snooze with Granny. Just needed to pick up a few items for the house prior to the arrival of the movers Tuesday morning.

As I walked the aisles of Walmart sipping my dark cherry mocha, I was suddenly struck by how bad I was starting to feel. My throat was sore. But lightheaded and dizzy? Chalked it up to skipping breakfast. But by the time I got home and sat down on the couch, I could not get back up. My mom, bless her heart, found some meds. for me to take and cared for Savannah, who was already feeling better. I was useless. By the next morning, I feared death was near. With the movers closing in with a houseful of our possessions and my need to be at 100%, I mused, "I haven't felt this bad since I had strep throat in the 5th grade..."

I found the courage to look in the mirror and say "aah". And then I said "eww". It was bad. Not surprisingly, the doctor said the same thing later that day. Not a huge shock that the swab culture came back positive for strep. And apparently, I was very contagious--at least for the following 2-3 days. So in addition to my antibiotics and pain meds., I snagged some face masks.

Despite the SARS ribbing (courtesy of J), the masks are pretty beneficial. People will leave you alone. No small talk in the waiting room. No chitchat standing in line. And they will keep their kids away from you,too. Which is rather nice. Another thing, you can convince yourself you are a medical doctor. I feel like I could perform gall bladder surgery on anybody walking by. And no ginormous student loans to pay back.

I am finally beginning to feel human again. So, if come at you with a plastic scalpel, just relax. Trust me.

I'm a doctor.

Friday, May 7, 2010

Intervention Divine

People have asked me how we can still behave like a family in light of what we are going through. The answer is simple: J and I love our children ~ much more than our own differences.

"Bolting to Baltimore"
~ March 22, 2010

Funny thing happened: we discovered we love each other more than our own differences.

Thought I had this thing all figured out. But James never left. And I never left. Enter: forgiveness, accountability, repentance, and a whole lotta manning up. Tremendous pain followed by joy and ultimately, restoration.

I wish I could take the credit, but my heart went from broken to hard as a rock. James can't take the credit, either. He was guilty of making some very poor decisions. But God has a way of humbling folks. Even the hardest heads, most rebellious spirits, the coldest hearts are no match for the love the Lord has for us. He will take a bad situation (that very often arises from our own disobedience) and use it for His glory.

What I did was release the situation to God. I released James. What God did was strip James down. His family, his health, his job--all in jeopardy. All at once. And then God showed him the amazing grace and mercy only our Heavenly Father can offer. And in that instant, James got it. He got it. And he hasn't been the same since.

It took a little longer for me to get it. God was dealing with me too. He put a mirror up to my face. Reminded me that I am human and saved by grace. Softened my heart.

Clearly, none of this happened overnight. It has been a long time in the making. This road to recovery is long and slow. But we are taking the steps. And we are getting help along the way. Seeking Godly marital counseling and asking the Lord for guidance. Spending time together and enjoying it. Talking--like never before and about things we haven't before. Actually listening to each other. And responding appropriately. Through it all, we are discovering much more about what has brought us to this season in our the life of our 14.5-year marriage. Not sure what the future holds, but I know I don't plan on living in the past.

People tend to say, "Ooh! I hope you two can get back what you once had!" I know they mean well, but I sure hope not. I don't want my old marriage.

I am enjoying the new one too much.

Wednesday, May 5, 2010

Top 20 Reasons Moms of Special Needs Kids R-O-C-K

*I borrowed this post from Ellen's blog today. Too good not to share.

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well, you tell me.

My #20: Because the appreciation we have for the little things puts life in perspective like nothing else can.

Thanks, Ellen!

Tuesday, May 4, 2010

Tuesday Tidbits

Today J and I took Isaiah to the hospital for more blood work. There wasn't anything else I thought they could test him for, but 6 full vials later ~ I stand corrected. After the MRI, his neurologist ordered more screenings. We meet with the new geneticist at the end of the month. She requested family photos and pictures of a growing Isaiah through the years. I think that will be fun to see myself. People are usually in one of 2 camps of thought when it comes to Zay: he either looks like everybody in our family or nobody in our family. I think he looks like Isaiah.

And speaking of the family, Mariah and I shared a very special "Girls' Day Out" late last week in celebration of her "blossoming" into womanhood---very much like the day Savannah and I shared a few years ago. We lunched, we shopped, we laughed. I didn't have the heart to tell her how quickly the novelty wears off...

Savannah is doing well in school. And next month, she'll be graduating from elementary school for the second time. Gotta love those resilient Military Kids who can move from a place where 6th grade is in middle school to a place where 6th grade is in elementary school ~ in the middle of the school year. She doesn't seem to mind, though. A party's a party. What she probably does mind is the fact that she has to wear a dress for the promotion ceremony. A white dress. Between now and then, it's my mission to find the most non-frilly, non-froufrou, least-likely-to-be-a-Confirmation dress on the market.

Other news on the Brownie front is our Big Move. Well, it's not that big--practically just around the corner. But it's a huge step for us. More about that later...

"Glee" is about to come on. :)