4 AM. Hadley started to stir next to me. I forgot her pacifier at home (#badmom) and the only pacifier the hospital could offer me was the one pacifier she would not take. I was afraid to move her with the 362,946 million electrode wires hanging along her back, but what's the point of a sleep study if your baby doesn't sleep? I picked her up and began to nurse. It felt different. She hasn't had a night waking for a few weeks now, but we were in a strange, cold, scary place and she had a bunch of wires wrapped inside of her head, so it was safe to assume she just needed some comfort. And there it was. That feeling. I have to admit, I haven't felt that closeness in a long time. The nursing comfort. With starting solids, the frequent doctor appointments, and all the therapy, I had forgotten to slow down and just enjoy.
Our developmental therapist suggested we take a pause from therapy for a week or two. I looked at her like she was crazy. I had been pushing her and pushing her, and yet Hadley was regressing. About a month ago, she had been steadily sitting up by herself, using her arms for support. It lasted a few days before she started wobbling around and swinging her head backwards. Frustrated that she wasn't progressing, I did more intense therapy sessions, and things just got worse. She'd throw more tantrums and she eventually figured out that if she thrusted her head backwards, we'd stop. Smart girl. I stopped forcing it and just let her be. I figured there was no harm in trying it out. And man, am I glad I did! The moment I stepped away, this sneaky little girl just rolled right on over to her belly! She never did it again. I'd coax her with toys and helped her by guiding her halfway, but she just refused to do roll over again. I used to incorporate a few exercises into our day, trying to trick her that these exercises were fun. She knew. Eventually I just stopped and played with her all day. I remember one day I left her on her back and went to get some lunch ready for her. All of a sudden I hear "ah", and then I hear laughing. I poked my head our from the kitchen, and the little booger was on her belly, laughing hysterically as if she was saying, "ha ha I did it and you missed it again". Sigh. So I rolled her back to her back and watched her. Nothing. I left, and I heard the laughing again. Yep, she did it. Again. Without me there. We went through this little tango for a few days before she got comfortable with me being there, watching her. I guess Ms. Sylvette was right. Always trust the therapist.
How did Hadley know when to roll over? How did she know that I was even there? I even stepped away, and poked by head out and continued to watch her, and yet she wouldn't do it unless I was out of sight. That's when I knew. I don't give this little girl enough credit. She can see. Of course, we knew that, but I had totally underestimated her. We had a follow up with our neuro-ophthalmologist last week, and he confirmed it. "There is no doubt that she can see." (If you could see me, I'm jumping for joy right now.) "She's a smart girl. You see how her eyes are tucked in the corner? She does that to compensate for her wobbly eyes. She tucks them in the corner so she can optimize her vision. She can see the best when her eyes are in the corner." Aaaaahhhh. That made sense. I always wondered why she would just stare off and start laughing. She was looking at me. She's been looking at me, and I didn't even realize it (again #badmom). We got so much good news that day. Our doodle could see. She was progressing.
When people hear "neurological condition", most assume that means intellectually disabled. It was something that I was uncomfortable talking about. It was hard to keep a straight face seeing their eyes fill with such sadness and sorrow for us. It was something that I didn't want. It was uncomfortable listening to "she'll catch up, some kids just take longer" or "my kid was like that". Your kid does not have a neurological condition. This is not the same. Of course, those words stayed inside. A simple nod and a half smile was all I could muster. I met a wonderful couple last week at the dog park. Hadley and I were parked underneath a canopy, throwing Kevin's favorite ball back and forth to get his energy out. This couple had passed by a few times with their dog and each time they stopped to talk to me. At first we talked about Kevin. They were so intrigued with how fast and agile he was, how he was so obsessed with that ball, how he would literally face plant every single time he tried to grab the ball. Hadley was just babbling away by herself, and the older woman came and said hello to her. "Is she sleepy?" she asked. "No, she just woke up not too long ago." I could feel her wondering why Hadley wasn't looking at her, like other babies would normally do. For some reason, I felt compelled to throw in that she doesn't see too well without her glasses before she could ask. She started to ask questions, and I did my best to answer them without being too vague, but also not give her every single detail. She asked more and more, genuinely intrigued. It turned out that she was a special education teacher for CyFair ISD. She had never heard of Joubert Syndrome, and she was so interested. She began to play and interact with Hadley, and it was so crazy..She didn't cry. She babbled back! I was shocked. SHOCKED. If you know Hadley, you'd know that she is the most dramatic when it comes to strangers. "She is so smart! You're going to have so much fun with her. She's got a huge personality already!" Hearing that come from a complete stranger was so heartwarming. People would tell me that I held her too much, and that's why she'd cry. They've said she cries all the time because she's uncomfortable from Joubert. They've said she probably has sensory issues. They've said I stay with her too much, that I don't take her out enough. They've said she's always overwhelmed because she doesn't really know what's going on. All of these were heartbreaking to hear. But I didn't have anything to say to them. These were coming from strangers, friends, family members. No, I know none were said in ill manner, but it's just not something a mother wants to hear. How could I ever be a good mother if I couldn't stand up for my child? To be her voice? Honestly, I've done a terrible job at it. I could never bring myself to defend her, to say HEY. YOU'RE WRONG. I let them say something was wrong with her. I let myself believe it. But it's just not true. She is smart. If anything, she's too smart. She can differentiate between my touch and someone else's. She knows can fall asleep at therapy, and we will leave her alone. No, she's not tired because she wakes up the second Ms. Sylvette is out the door. She knows what is going on. She's very aware. She knows when Kevin is in the room with her and when he's not. She knows when a stranger is in the house. They say that everything happens for a reason, and I know in my heart that I was meant to meet this woman.
So what's next? Who knows. We were held back at the hospital after Hadley's sleep study ended. Her CO2 levels were reading higher than normal and they wanted us to speak with a pulmonologist. After we spoke, she broke down the sleep notes. It turns out, Hadley does have mild sleep apnea. I was so sure she didn't, because I spent countless nights up with her, cuddling and watching her sleep. Sleep apnea was never on my radar because she slept so well at night. On the bright side, it's mild. We have another study scheduled to confirm. CO2 levels were high-ish, but not enough to where they would be worried. It seems like we run into a lot of problems, but they all seem to be "mild". It was suggested that we keep up with our new pulmonologist and keep an eye on things. Her heart rate was higher than normal, but again, not enough to cause worry. Liver panel. Electrocardiogram. Genetics Test. Bloodwork. Creatinine. A new ENT. Basically a bunch of things I don't want to do because honestly, I'm tired. I'm tired of hearing bad news. I'm tired of going to doctor appointments alone and I'm tired of bearing bad news to Marlon. But, I continue to pray. I continue to hold back the tears at the appointments. I continue to research. And I pray some more. And my goodness. My girl is a warrior. She's been through so much and is only nine months old. She fights everyday. I don't see it because I am literally with her 24/7, but Marlon is always saying how much she has improved? Has she? I never notice. But then I stop and think about it. She has improved so much. She works so hard everyday. Just a month ago, she would lie there and chill. Now she rolls onto her belly and looks around. She babbles. She has conversations with me. She's silly. She has personality. She's eating finger foods. She loves chewing food. She wasn't like this a month ago. She fake cries to get what she wants. She cries, stops, looks at me and waits for a reaction. She smiles when we read her favorite book. She laughs at her favorite page. She screams at Kevin when he licks her. And you know what? I wouldn't trade her for anything in the world. I'd go through all the bad over and over again. Her good certainly outweighs the bad. So that's what we'll do. We'll continue. We'll continue to go to the million of doctor appointments. We'll continue seeing the 8,243,234,702,384,497 specialists we have. (And yes, I complain about seeing so many, but I really am eternally grateful and extremely thankful that we are fortunate enough to have such a terrific team of specialists only 30 minutes away.) We'll continue to raise awareness for Joubert Syndrome. We'll continue to support her. We'll continue to cheer her on. We'll continue to love her. And most importantly, we'll continue to pray.
It's time to let go. It's time to let go of our fears. Of our worries. Of our normal. It's not in our hands anymore. And I don't think it ever was. It's time to let go. Let go, and let God. I trust him. He's got us.
How did Hadley know when to roll over? How did she know that I was even there? I even stepped away, and poked by head out and continued to watch her, and yet she wouldn't do it unless I was out of sight. That's when I knew. I don't give this little girl enough credit. She can see. Of course, we knew that, but I had totally underestimated her. We had a follow up with our neuro-ophthalmologist last week, and he confirmed it. "There is no doubt that she can see." (If you could see me, I'm jumping for joy right now.) "She's a smart girl. You see how her eyes are tucked in the corner? She does that to compensate for her wobbly eyes. She tucks them in the corner so she can optimize her vision. She can see the best when her eyes are in the corner." Aaaaahhhh. That made sense. I always wondered why she would just stare off and start laughing. She was looking at me. She's been looking at me, and I didn't even realize it (again #badmom). We got so much good news that day. Our doodle could see. She was progressing.
When people hear "neurological condition", most assume that means intellectually disabled. It was something that I was uncomfortable talking about. It was hard to keep a straight face seeing their eyes fill with such sadness and sorrow for us. It was something that I didn't want. It was uncomfortable listening to "she'll catch up, some kids just take longer" or "my kid was like that". Your kid does not have a neurological condition. This is not the same. Of course, those words stayed inside. A simple nod and a half smile was all I could muster. I met a wonderful couple last week at the dog park. Hadley and I were parked underneath a canopy, throwing Kevin's favorite ball back and forth to get his energy out. This couple had passed by a few times with their dog and each time they stopped to talk to me. At first we talked about Kevin. They were so intrigued with how fast and agile he was, how he was so obsessed with that ball, how he would literally face plant every single time he tried to grab the ball. Hadley was just babbling away by herself, and the older woman came and said hello to her. "Is she sleepy?" she asked. "No, she just woke up not too long ago." I could feel her wondering why Hadley wasn't looking at her, like other babies would normally do. For some reason, I felt compelled to throw in that she doesn't see too well without her glasses before she could ask. She started to ask questions, and I did my best to answer them without being too vague, but also not give her every single detail. She asked more and more, genuinely intrigued. It turned out that she was a special education teacher for CyFair ISD. She had never heard of Joubert Syndrome, and she was so interested. She began to play and interact with Hadley, and it was so crazy..She didn't cry. She babbled back! I was shocked. SHOCKED. If you know Hadley, you'd know that she is the most dramatic when it comes to strangers. "She is so smart! You're going to have so much fun with her. She's got a huge personality already!" Hearing that come from a complete stranger was so heartwarming. People would tell me that I held her too much, and that's why she'd cry. They've said she cries all the time because she's uncomfortable from Joubert. They've said she probably has sensory issues. They've said I stay with her too much, that I don't take her out enough. They've said she's always overwhelmed because she doesn't really know what's going on. All of these were heartbreaking to hear. But I didn't have anything to say to them. These were coming from strangers, friends, family members. No, I know none were said in ill manner, but it's just not something a mother wants to hear. How could I ever be a good mother if I couldn't stand up for my child? To be her voice? Honestly, I've done a terrible job at it. I could never bring myself to defend her, to say HEY. YOU'RE WRONG. I let them say something was wrong with her. I let myself believe it. But it's just not true. She is smart. If anything, she's too smart. She can differentiate between my touch and someone else's. She knows can fall asleep at therapy, and we will leave her alone. No, she's not tired because she wakes up the second Ms. Sylvette is out the door. She knows what is going on. She's very aware. She knows when Kevin is in the room with her and when he's not. She knows when a stranger is in the house. They say that everything happens for a reason, and I know in my heart that I was meant to meet this woman.
So what's next? Who knows. We were held back at the hospital after Hadley's sleep study ended. Her CO2 levels were reading higher than normal and they wanted us to speak with a pulmonologist. After we spoke, she broke down the sleep notes. It turns out, Hadley does have mild sleep apnea. I was so sure she didn't, because I spent countless nights up with her, cuddling and watching her sleep. Sleep apnea was never on my radar because she slept so well at night. On the bright side, it's mild. We have another study scheduled to confirm. CO2 levels were high-ish, but not enough to where they would be worried. It seems like we run into a lot of problems, but they all seem to be "mild". It was suggested that we keep up with our new pulmonologist and keep an eye on things. Her heart rate was higher than normal, but again, not enough to cause worry. Liver panel. Electrocardiogram. Genetics Test. Bloodwork. Creatinine. A new ENT. Basically a bunch of things I don't want to do because honestly, I'm tired. I'm tired of hearing bad news. I'm tired of going to doctor appointments alone and I'm tired of bearing bad news to Marlon. But, I continue to pray. I continue to hold back the tears at the appointments. I continue to research. And I pray some more. And my goodness. My girl is a warrior. She's been through so much and is only nine months old. She fights everyday. I don't see it because I am literally with her 24/7, but Marlon is always saying how much she has improved? Has she? I never notice. But then I stop and think about it. She has improved so much. She works so hard everyday. Just a month ago, she would lie there and chill. Now she rolls onto her belly and looks around. She babbles. She has conversations with me. She's silly. She has personality. She's eating finger foods. She loves chewing food. She wasn't like this a month ago. She fake cries to get what she wants. She cries, stops, looks at me and waits for a reaction. She smiles when we read her favorite book. She laughs at her favorite page. She screams at Kevin when he licks her. And you know what? I wouldn't trade her for anything in the world. I'd go through all the bad over and over again. Her good certainly outweighs the bad. So that's what we'll do. We'll continue. We'll continue to go to the million of doctor appointments. We'll continue seeing the 8,243,234,702,384,497 specialists we have. (And yes, I complain about seeing so many, but I really am eternally grateful and extremely thankful that we are fortunate enough to have such a terrific team of specialists only 30 minutes away.) We'll continue to raise awareness for Joubert Syndrome. We'll continue to support her. We'll continue to cheer her on. We'll continue to love her. And most importantly, we'll continue to pray.
It's time to let go. It's time to let go of our fears. Of our worries. Of our normal. It's not in our hands anymore. And I don't think it ever was. It's time to let go. Let go, and let God. I trust him. He's got us.
A typical therapy session.
Sleep study day. She looks like a Korean pear. (ha!)
Sitting up with her own arms for support!
Just having a conversation with mama in the car.
Stay tuned!
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