My story keeps evolving. Our story, I should say. The children, Max-4 and Charlie-2, are doing great - wonderful, in fact. I'm doing much better too, I must say. I have gone through a roller coaster of emotions surrounding all of the challenges/surprises I faced since the beginning of this blog. Even since the last time I posted an update, have things regarding my children rattled my world, our world--Brock, myself, Max and Charlie.
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| Max & Charlie |
However, children have a way of adding a layer of comfort to any situation -- like a fluffy, furry, soft blanket over your shivering body on an icy night. I am beyond thankful that they are who they are and that they are in MY life. I couldn't have asked for a better cast of characters in my "play." Truly.
So, the story began with Max and I for two glorious years. A mom with her only son, at that time. We perhaps wanted to add a sibling to the mix "in the future".. but not in a huge hurry. Max and I were as tight as a mother and son could ever be. I cried over the mere thought of giving birth to him. His gorgeous being was overwhelming to me. I couldn't imagine loving another human being the way I loved him, my first child.
But...when I became pregnant with little Char-Char, I knew it was completely, entirely possible to have the same "volcanic" love for more than one child. It was, like with Max, undeniable. That love that grabs you and pins you down. There's no escaping the heartburn, nerve-tingling love that you feel for your children. Any mom I know, totally gets this.
My children have created new things in my personality too that include a "mama bear" like I've never seen. I'm extremely protective and defensive of my "cubs." I'm also kind of a "neurotic-multi-tasking-anxious-house cleaning-type" mom too (deep breath). It's really comical to see me in action sometimes... I don't know whether I'm coming or going. I often clean several times a day --exciting huh? -- and leave the house only to come back 5 more times to get things I've forgotten. My busy mommy mind is like an overflowing pot sometimes.
You know, I thought being a mom might make me a better "employee" at some point in my life, you know with all the "new skills" moms pick up (wink, wink)... but I'm a little scared of the kind of employee I'd be now. I get a lot done in a short time but my thoughts are always strolling back to "where are the kids?" "everyone ok?" "I should be doing something with them" "What do I cook for dinner?" "I'll read them a book" "No, I'll take them for a walk"... etc..etc.
Basically, I'm a mom on steroids! Not literally, I hope you know! I was telling someone recently, I can't imagine taking any job as seriously now that I have kids...it's like are you kidding me? I remember how much time I put into work: staying late every night, stressing over presentations and now having to leave my kids home sick? These are things that would make me want to quit.. in a heartbeat. Reminiscing about some of my old employers confirms that my head wouldn't be in the job with them... I would need to work for a family-focused business not a typical "dog-eat-dog" business. Although back then, I WAS that "married-to-my-job" kind of employee. It's ironic.
To wrap it up, I truly love to work but my primary job is to raise Max and Charlie right now. I do realize that I'm very lucky to get this opportunity. I chose this route for myself. There are oodles of women who would rather be working and are very defiant in their choice to work-- and I'm proud of them too. It would be such a sacrifice to me (of Olympic proportions) to leave my boys every single day.
On the OTHER hand, my children will both be in school starting in September. And incredibly, I'll have free time! So, this mommy wants to explore things I love to do and how I can help the family financially. I want my talents and skills to be utilized to enhance my life, our lives. Additionally, I want to show my kids that mommy has a well-engineered brain, boundless creativity, and strong ambition. I hope they enjoy seeing their mother busy, growing and excited for "her" future as much as I am for theirs!
Phew---- deep breath. Did any of my rambling make any sense?
I wanted to update on Charlie's progress too. Regarding sweet, funny, silly, adorable Charlie, who just turned 2 on July 28th -- he's doing fantastic!
We've been through lots of ups and downs including two hospital stays at Cook Children's Hospital in Fort Worth, Texas.
In January of this year --right after a beautiful Christmas and New Year-- Charlie got a stomach bug. This stomach bug lasted 4 days roughly. I noticed something strange though around day 4 -- he was acting weaker instead of stronger. Although the diarrhea had subsided, he was showing no improvement in his muscle strength. I took him to his pediatrician and he gave me antibiotic and sent me home. It was the "he's just weak after a bad stomach bug" diagnosis. So, I brought him home, worried yet hopeful he'd heal and this would be behind us. I really expected him to show improvement and not decline. I even posted on Facebook at the time that I thought my son Charlie was "regressing" and whether anyone had any advice.
Charlie's arms and legs kept getting worse--he refused to do things he used to do. He didn't pull up in the crib anymore; he sat a lot and played on the floor. Previously, he was cruising around the furniture and that stopped altogether. He also had trouble picking up his sippy cup, and he had to move his mouth to his hand to feed himself--instead of moving his hand to his mouth. Poor Charlie was crankier than usual too(he was normally happy and playful), he stopped scooting around on his bottom and even avoided scooting over to me--which was really odd to me. Still our sweet, sweet Charlie, he continued to show love and was fun, cute, and talkative.
Around day 8, I was up at 3 and then again 5 a.m. that morning worrying about Charlie; researching his ailment online. I kept getting up thinking about him and his situation. Beside myself, knowing that he's getting worse, not better. I knew something had to be done soon. It was the final straw the next morning when I went into his room and peaked inside his crib and noticed he had slept through the night and didn't move an inch. The night before, I had covered him with a blanket and fully expected him to kick it off at some point, but he didn't. I picked him up in tears and realized my poor little baby was drenched in sweat. I was shaking as my "mommy-radar" went off like a siren in my head and we kicked it into high gear. I said "We're going to Cook's!!".
At Cook's we got the red carpet treatment. Charlie had an open heart surgery at 4 months old and they took care of him then. (Very well I might add -- and I was grateful for that). I remember getting Charlie in the car to go to Cook's and I was so confident in the decision and even excited because I knew we were on our way to "help." It was like going to the Wizard of Oz. I knew when we walked through the doors, they would step in and rescue him. They are very aware of the many issues kiddoes with Down's syndrome can have. Strangely, this disorder that Charlie had was not one of them.
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| Charlie LOVES to read.. passing time in his hospital bed |
After a battery of tests -- blood drawn, x-ray, MRI, and even a spinal tap -- they found what the problem was. The young ER doctor who was in charge of our case was the answer to my prayers. He did all the tests that I previously researched and knew could help us determine what was wrong. The night before, Brock and I researched what caused paralysis in limbs and one of the problems came from something called Guillain-barre syndrome, which can be determined by spinal tap only--testing the protein levels. Basically, this syndrome is a very rare reaction to his stomach bug. Something that afflicts 1 in 100,000 a year; mostly men in the 30-50 age range. This reaction was actually Charlie's own body attacking itself. The antibodies from the virus were going crazy and destroying the nerve endings in Charlie's body, starting with his legs, moving to his arms and would gradually cause devastating debilitation of the rest of his body if not treated quickly. This disorder typically has a recovery time of 4 months to many years.
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| Charlie meeting a nice stranger while on a walk in the red wagon |
I was relieved that it was something he'd recover at all from but the whole thing was just mind-boggling as to why he was in this position at all. It was imperative that we get him on the proper medication to turn this thing around. I was in constant tears as you can imagine. First, I was relieved to "know" what was causing his rapid decline and second, that it was recoverable and lastly, extremely frightened to imagine what could happen if the drugs didn't properly help him.
I met his neurologist soon after and discovered we were in for a long haul -- at the hospital for at least 4 months he said. He warned us that it would get much worse before it got better. Which means he would become more paralyzed and even lose his ability to breathe. He would have to be on a breathing machine. The medication -- intravenous immunoglobulins (IVIg) -- was our miracle drug. He was hooked up to a drip for 4 hours each night for 5 nights. He showed improvement almost immediately. The drug was actually a blood product that overwhelmed the body with antibodies and "convinced" the body not to produce anymore--so hence, the destruction of the nerve endings ceased. We did however learn of another issue sweet Charlie would have to face when they did the MRI. Fortunately, the issue was less serious in comparison to the Guillain-barre. He would have to have surgery at Cook's for a spinal defect called a tethered cord. We have since had that surgery as well -- on June 28th, a month before his 2nd birthday -- to the day.
Charlie blew me away with his strength, agility and happy demeanor. I'm still amazed at him when I look at him. And don't think I don't remind myself every single day when I see him pull up in the crib, scoot around the floor, feed himself, read his books, do his signs, laugh and smile, cruise around furniture, play with his toys... etc etc, of how LUCKY and BLESSED we are. He's back and stronger than ever!
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| Max hanging out on July 4th |
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| Our lemonade stand at Charlie's 2nd birthday in July |
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| Max "walking" with Charlie |
Max turned 4 in June and we celebrated with a family beach vacation with my sister's family. They had so much fun! What a wonderful turn of events. Sweet Max has been the ever-so-supportive big brother to a little guy that was born with challenges. Mommy and Daddy coping as best we could. Making it through, now stronger than ever.
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| Charlie meditating ... this is one of the best pictures... EVER. |
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| Mommy and Charlie - June 2012 |
July 28th, Charlie turned 2. He is definitely back to where he was before the guillain-barre, and then some. I'm so, so proud of him. Charlie's favorite animals are farm animals -- he signs them all. For his birthday, we did a farm animal theme and surprised him with a petting zoo in the front yard. It was unforgettable. He loves horses too and a fitting theme could've been "back in the saddle again."
Hope you feel caught up in our happiness... until next post. Thank you for your love, support and interest.
PS...if you want to support Charlie in the upcoming Fort Worth Buddy Walk, it's October 20 at the UTA campus from 10 am 'til 1 pm. Hope you can join us in the walk!
xoxo!
