Throwback Thursday - Cait edition

Since tomorrow is Cait's 13th birthday, I thought a fun throwback would be Cait BEFORE her birthday. What better way to show that than an ultrasound? This first one was dubbed "Alien Baby". She looked right at us. Haha! The second is her beautiful little profile. The technician told us that a good profile is often hard to get but she cooperated quite nicely. Sigh...how was this 13 years ago?

Throwback Thursday!

To keep with yesterday's blog post theme, I chose a picture to go along with that day. This was the first picture we took of the girls after Madi was brought home from that very first hospital stay. That was the longest they had ever been away from each other. Can you see the love & excitement? <3

Decade of Reflection

March 26, 2004: It started off like any other day. Cait got up, wanted some Cheerios & threw on some Dora. Madi had a bit of a rough night but still had a smile on her face. I was exhausted & attempting to get things done around the house but found myself screwing around on a couple of messaging boards in between parenting duties. I noticed Madi was falling asleep & her cheeks seemed a little flushed. Next thing I know, I receive a call from a woman named Sarah that was a part of those messaging boards I referred to & a local playgroup. Sarah called to lay some truth on me...she said that while she was holding Madi for me at the previous playgroup, she noticed some of Madi's strange mannerisms. She explained that these mannerisms reminded her of some kids she had worked with during her time as a pediatric intensive care unit nurse. That I should definitely push the doctor at the next visit to check Madi more thoroughly like I thought they should. I didn't know what to say. I was shocked at some of the things she said but at the same time, on a certain level, I knew there was something different about Madi that I couldn't put my finger on. I knew I was getting the run around from the doctors. While I was pacing around talking to this lady, I stopped to look at Madi (who I thought was sleeping). She wasn't. She was looking off to the side, her breathing was a little heavier, her eyes almost seemed twitchy & her limbs were slightly twitchy. I told Sarah what I was seeing & she had me move Madi's hands over her head to see how they came back down & when I told her the results, she said "I think she's having a seizure. I would get her to the ER." So I hung up & freaked out. Big time. Called the girls' dad in & told him we needed to get her to the hospital or urgent care right away. Oh my goodness was I a blubbering idiot. We didn't know then what we know now so try not to judge us too harshly but the next thing we did was pick her up & take her to the urgent care down the street (it was really less than 5 minutes away). They confirmed that she was seizing but that they were limited in what they could do so an ambulance was called to take her to the nearest pediatric ER. When we got to the hospital, everything from then on out was a bit of a blur...there were people asking what happened, had she been dropped, does she have a history of seizures, what kind of insurance did she have, etc. People surrounded Madi's bed working on her to get the seizure stopped, to get her hooked up, ordering CT scans, MRI's, spinal tap (checking for meningitis - which she tested positive for) and all of these tests that I'd only really heard about because I watched a lot of ER (please tell me I wasn't the only one hooked on that freaking show?). We were scared. They took her away to do these scans & before I knew it, there was a neurosurgeon there talking to us. How did we go from a seizure to a neurosurgeon?! He says "it doesn't look like we'll have to do anything on our end..the hydrocephalus looks controlled - no shunt will be needed." Hydro-what? Shunt? Say what?! It was crazy. They got her seizures controlled but she was knocked out. Now right around the same time all of these crazy things were happening, I get called away by one of the nurses because there's a visitor outside to see me. What the hell? Who knows we're here? I walk out & there's one of the ladies from the playgroup standing there. Her name is Karla & we really didn't know each other that well. We'd hung out at groups & chit chatted here & there but we weren't super close. I ask what she's doing there & she said that Sarah wrote a post explaining what was going on after we hung up. Karla felt compelled to jump in her truck & come down immediately to check on us. No questions asked, no hesitation, just wanted to come support us & make sure we weren't alone. She gave me one of the biggest hugs I've ever received & proceeded to cry with me. 10 years later & she's one of the best friends a girl could have. Ok, I'm getting side tracked. Ha. The next several days were puzzle days. They were days where we finally started to get answers as to why Madi wasn't coming along developmentally like Cait. Why the seizure happened, why her head was a little larger...we were putting together the pieces to a very large puzzle. Within 2 weeks, we got the diagnosis that Madi had Cerebral Palsy & would more than likely have other issues like seizures based on all of their tests/scans but that only time could tell where she'd fall developmentally. Now why did I label this post Decade of Reflection when all I did was give you a lengthy explanation of that one day? Because there isn't a year (or a day really) that has gone by since that I haven't thought about that one day & the feelings towards it have evolved tremendously. I used to get depressed every year about it. How much this sucks. How unfair it is that any child should have to go through this. I would shut down & had to pull away from other parents who had kids Madi's age because all I could see were the things these other kids were accomplishing that Madi couldn't do. I wanted to curl up in a ball every year thinking about what we had gone through. Up until this day, it was the scariest, toughest experience of my life & I really didn't want to re-live it. What I don't think a lot of people understand about special needs parenting is the grieving process that the parents go through after they receive a diagnosis. Essentially the idea of the child we built in our head while we were waiting for them to be born, dies once we hear the words. I know I know, that's a gloomy idea but it's the truth. Madi will never be a "typical" kid by society's standards. She's not going to get to experience everything that I've wanted for her in the way that most kids get to. She has had more medical procedures done on her in her 10 years of life that most people do in their entire life spans & some that most people don't ever have to experience. It takes time to accept that reality & adapt to it. To really embrace it. Some never do. I see it every day at work...that's a whole other blog post though. Ha. You have to mourn the loss of that ideal child & fully accept the beautifully challenged child in front of you. She brings me a certain joy that I never thought was possible. Those little things that everyone else take for granted, we get to celebrate in a big way. She works harder at everything she does & that means that I have no excuse not to do my best too. SHE taught me that. She is going to have a great life. Maybe not the one I had in my head originally, but it's going to be one that is personalized for her. She knows no difference. She is a happy, bright child who at times, I'm a little jealous of because no matter what kind of day she's had or what she's been through, she smiles & laughs. She doesn't have the weight of the world on her shoulders. Now when I think about this day, I am filled with gratitude. It's the day our lives changed. I'm thankful that there are ladies like Sarah & Karla in my life who had the courage to call me to tell me something I didn't want to hear but needed to & shows up to support me when I probably would've been too proud to accept her kindness had she asked first. I'm thankful for the other people that I have been blessed to meet since that day BECAUSE of her diagnosis...there are nurses, therapists, workers, friends, etc. that we consider family. I'm thankful for those message boards because they allowed me to vent when I needed to & when I was stuck at the hospital or couldn't have support in real life, they "kept me company". I'm grateful to have been forced to find a voice to advocate for BOTH of my children because I truly believe that this is what I was put on earth to do. I'm grateful for the struggles because in them, I found my strength, patience, a different perspective on life & an understanding of what's really important. Not only have I been able to find all of these things, but so has Caitlin. I'm grateful that Caitlin has been exposed to all of these struggles because it has made her an empathetic person who treats everybody equally regardless of abilities or lack thereof. I'm so proud of her. I'm grateful for the knowledge I've accrued over the years because not only has it helped me come to the decision to go to nursing school but there's also possibilities to help other families out there who are somewhere in their crazy journey & need someone to listen who can understand on a level that only a person who has lived it can. Happy, crazy 10 years. I can't imagine what life would've been like if that day were any different. I wouldn't want to. <3