YOLO!!

YOLO!!!! Do you know what that means?!?! Nope? It's okay because none of us on the Sigma Kappa Girls Weekend knew either. Apparently, by the time you reach your 10-year-friendship anniversary, you're out of touch with the coolest slang. We might not know the right acronyms, but this weekend was a reminder that, indeed, "You Only Live Once".

After the first leg of my trip, I asked the flight attendant for some assistance getting off the plane. Dragging two kiddos and a giant bag down the aisle wasn't quite as easy as I had hoped. To my dismay, the attendant responded that "she wasn't there to take care of my luggage". Whatever. I was in my happy place, and nothing was going to stop me from seeing my family and friends! 

This kiddos were as good as gold for all parts of the flights, and as promised, Molly was there to greet us at the gate when we walked off the plane! Not only was it awesome to catch up with her since it had been a year since we last saw each other, I realized that she saved a significant portion of my sanity by being there to help. By the time we made it to my parents' house, we didn't even need a nap and were ready to play.

Grandma Malone and Auntie Theresa were ready to play with Luke and snuggle with Baby Claire, and the two kiddos enjoyed being spoiled rotten for the entire weekend. Once everyone was settled, it was time for momma to party!! Well, I say "party" in theory because not only did we discover that we no longer know the latest slang, staying up late isn't exactly in our repertoire either. Despite the evident shift, nothing beats a weekend with the girls. We hit up our old stomping grounds, drank our favorite drinks, and enjoyed Wheel pizza. Most importantly, we laughed.

 Over the past ten years, we have been through everything together. From dating and meeting our husbands to fertility issues to sick kids and spouses to the deaths of parents and siblings to having babies, we've celebrated milestones and limped along and picked each other up when the going got tough. This weekend was no different, but for the first time, our kiddos were old enough to play with each other! It's a very surreal feeling when you're walking through your old sorority house with your old room mates and you have five kiddos with you and one friend about to have another baby in a few weeks!

After a weekend away, we're all ready to face the world again. Uncle Mike met us at the airport to help us along, our flight was uneventful, and we were home with dinner done, bags unpacked, laundry folded, and all in bed by 9 p.m. This was a good practice trip because our next one is in 24 days when we leave for HAWAII!!! After analyzing our situation, talking to Claire's doctors and Luke's therapists, making arrangements with my work and the kids' daycare, we have decided to head out for our trip earlier than originally planned.

Apparently, the news of this change has made Claire very happy. I don't know if it is the excitement of leaving for Hawaii, the power of prayer, or her new seizure medicine, but we are definitely seeing improvements in Claire. Over the past few days, I had been thinking Claire seemed a bit more attentive; however, I'm prone to over-analyzing (shocking, right). Today at therapy the first thing Claire's therapist commented on was how attentive she was!! We're getting a lot more smiles and a lot less tears, so please keep the prayers coming. Doctors still don't have any results for us, but at least we have a trip to get ready for.

In response to all of your kind e-mails, texts, cards, meals, bottles of wine, etc., thank you. This month has been emotionally rough. Poor Claire has been through a lot, and the logistics of rearranging our lives has been daunting, but the words of support have made it seem more manageable. Patrick thanks you as well because he is receiving far fewer phone calls from his emotionally distraught wife :)

"A true friend is someone who thinks you are a good egg even though he knows 

you are slightly cracked."

I finally found my words

The other day at work I sat there listlessly staring out the window watching kiddos run around on the playground, and I saw something amazing. There was Luke, running around with his friends in his funny Frankenstein-like walk. Although this doesn't seem like the most earth-shattering observation, it is for a little boy who doctors said may not walk until he was five. As parents, we needed to be prepared with "different" expectations because Down Syndrome was going to redefine our lives. They were right.

When looking back on our time in NICU, I remember wondering what our lives had in store. How were our friends and family going to react? How was I even going to find the strength to tell everyone that one sentence out of a doctor's mouth had shifted our entire universe? How were we ever going to figure out how to be parents, let alone to a sick little boy who couldn't even breathe on his own without help?

Mother Theresa once said, "I know God won't give me anything that I can't handle. I just wish he didn't trust me so much". While I agree with her statement, I'd like to amend it. "I know God won't give me anything that I can't handle without my friends and family."  Whether it was long hours in the NICU at birth or at Children's Hospital with pneumonia or just enjoying time together, our family has been Luke's biggest cheerleaders.

Through it all, Luke has shown more strength than all of us combined. From hours in therapy learning to hold up his head to bearing weight on his legs to walking independently, Luke continues to defy the odds and the dismal predictions that doctors made after his birth. Our hope now is that Claire finds the same sheer determination to fight the odds as she faces her own health struggles, albeit at this point, she seems to be perplexing the doctors.

To make a long story short, we have no idea what is going on with Claire.  During her 10 days in the NICU at birth, doctors suspected that she had some sort of genetic disorder due to her lethargy, low muscle tone, and recessed jaw, but the initial genetic panel came back clear. Since then, she has suffered from severe belly issues which have included an intolerance to almost any formula and even breastmilk.  Doctors have diagnosed it as everything from severe colic to immature digestive system. Well, when she barely gained one pound between four and six months, doctors finally agreed to admit us to the hospital for testing.

So, with Patrick deployed, Claire was admitted to LSU hospital three weeks ago for a full round of testing from cardiology, neurology, genetics, and everyone else who felt the urge to see the mystery baby. While the initial tests for blood enzymes/metabolic issues have come back clear, neurology performed a video EEG to assess Claire's brain activity. Unfortunately, they saw "abnormal wave lengths which indicate seizure activity", so we've begun medication. The good news is that our new prescription formula seems to be doing the trick with the belly issues. Now, the elephant in the room is "What the heck is causing all of these issues??!?!"

For now, all we can do is pray. If it is a genetic or metabolic disorder, there is no "cure". The question at that point is what medicines or therapies can we use to minimize any secondary symptoms associated with the diagnosis.  On the other hand, doctors may never be able to pinpoint what is going on. Babies are fighters. We have now spent 48 days in the hospital between the two kiddos watching them fight. Maybe this will all end up being nothing or maybe it will have a more profound impact on our lives than even Down Syndrome did. Only God knows.

This takes me back to my original point that doctors were right. Luke's diagnosis impacted our lives more than we ever anticipated; however, the distinction is, as Patrick always reminds me, is that it did not define us. We have been introduced to a world that we might have otherwise taken for granted. From teams of doctors and nurses to therapists to Alycyn, one of the dearest babysitters we could have asked for, people entered our lives whom we would have never met. Furthermore, we learned true compassion from our family and friends as Grandma Godinez has driven hundreds of miles for every hospital stay, my family has let me talk/cry/analyze every situation, friends have kept us fed, and neighbors have stepped in to take care of the house and dogs.

Today, we're in a situation that we least expected. We're up against a world of unknowns for what the future holds for Claire, but it is what IS known that will get us through. Quite simply, our friends are phenomenal. Typically in a stressful situation, I'd rely on Patrick for support, but in the funny twist of events that we call "military life", he is deployed to Hawaii. So, Kristen calls frequently to make sure I don't need to vent about the doctors' inability to agree on a direction to go, Angela keeps me fed, Girl Mahaffey supplies me with her infinite medical knowledge when I have no clue what doctors are saying, somehow Suzi has managed to keep me fed and with drinks all the way from Colorado, and there are countless others who have called/texted just so I know that they are thinking about us and praying.

Just the other night, Patrick was lecturing me that I can't sit here feeling sorry for myself and I told him to shove it. The truth was, I did feel sorry for myself. What are the odds to potentially have two special needs kids? What are the odds that one diagnosis would come when Claire was 7 months old and Patrick was deployed to Hawaii (seriously, who deploys to Hawaii?!?)? Why was I having to face this by myself? Tonight, Molly pulled me out of my emotional funk. I'm flying home to Kansas on Thursday for the annual Sigma Kappa reunion, and quite frankly, I am terrified to fly with both kids by myself. Although Claire's belly seems to be doing better, I can't say with 100% confidence that she'll be feeling well for the flight. Pair that with "The Human Tornado" aka Luke, and to say I am overwhelmed is the understatement of the year. But, after crying on the phone with me earlier, Molly surprised me with a text that she's meeting me at the Kansas City airport so that at least when I land, I don't have to be alone. Although, what I can realize now is that I haven't been alone yet.

"Please be a traveler, not a tourist. Try new things, meet new people, and look beyond what's right in front of you. Those are the keys to understanding this amazing world we live in."

For now, please pray for Claire. Pray that she has the strength to overcome whatever is going on in her tiny body, no matter how minor or major it may turn out to be. And thank you - for everything.

Claire rockin to the 80's!

Intruder

If you haven't heard, I have replaced my husband with a new significant other: my treadmill.  It fills the void in the house, keeps me entertained, and most importantly, it doesn't make a mess. This morning before the chaos of the day, we were spending some quality time together and getting caught up on missed television. When I finally couldn't procrastinate any longer and still make it to work before noon, I headed into the bathroom to get ready for the day. Suddenly, I heard a loud bang in the living room. Frantic, I grabbed the remote to turn down the television, and I listened intently from the bathroom doorway. Then, I heard the blinds on the front door banging against the door frame. By this point, I was shaking uncontrollably and thinking, "What the hell am I supposed to do and why aren't my dogs doing anything to protect me!?!?" So, logically, I ran into the hallway, still sans clothes from my shower, and flipped on the light. Yes, so the intruder could see my look of utter fear. Instead of a man in a black mask, I came face to knee with the cutest little midget squealing "Eat, eat". Apparently, in my obsessive compulsive habit of checking on the kiddos 1,000,000 times in the middle of the night, I didn't close Luke's door quite all the way. But, if an intruder ever does enter the house, the new man of the house has been practicing his martial arts skills and will keep me safe.