Three months. It has been almost exactly three months since my last post. A lot of people have been getting on me (mostly my mother). "Where is your blog?" "You better get to posting!"
Chillax. I will do it when I do it. I've actually lost track of time. Believe me, this child gives me PLENTY of material day in and day out. I've just gotten wrapped up in loving him at HOME. Turns out, being a mom, even at home, is busy work! I've become pretty good at taking care of him, but in the mean time, I have been a pretty crappy friend being wrapped up in my little bubble. I love all of you who have stuck with me and I am sorry! It is my new resolution to step it up a notch.
I do not know where summer went! Our little family has settled in, being hospital free for record time. I can honestly say I've grown up more in the past 9 months than I have in the past 28 years. Everything has been put into perspective. I have truly learned what is most important and have been taught to cherish and treasure every single thing my son does. Believe me, not a day goes by that I do not thank the Lord. Every night I close my eyes and thank him. I thank him for this blessing of a son he chose me to have. It's hard for us to not look at those baby blues of his without getting teary eyed. This child is a walking miracle!
Parker is doing well, physically and mentally. He is playing and "gibbering". His little voice over the baby monitor is an alarm clock I've grown accustomed to. Though I will love the days when I can sleep again, I will miss his little voice waking me up. I did not think it was possible to love him more, but I do. Every. Single. Day.
Chubby Cheeks!
Baby Blue Eyes!
Momma! Dadda! Baba!
Giggles!
I cannot get enough of him! Ahh!
Let's go back to December 2013. Remember we had doctors tell us that there was a significant amount of brain damage. I have yet to see it and unfortunately continue to look for hints or clues that it is there I know I shouldn't do that. Believe me, but I do. I can't help it!
Something happened when we came home the last time from the hospital. I just got myself into this funk and feeling like so much of a failure I was miserable to be around. I would literally cry spontaneously about our situation at least five times a day. I literally questioned every aspect of Parker's being. What could I have done differently. I was placing all kinds of blame on myself. Can you say depressed much? I am woman enough to admit that I was depressed. I was miserable! Sleeping was impossible and fear of losing Parker was giving me so much anxiety I was literally losing my hair and eating my way through every fast food restaurant in Whiteside County.
Once I was able to admit that I couldn't fight these demons alone I went to my doctor. He point blank told me, "Caitlin. His diagnosis isn't going to change. This doesn't go away. So we need to figure out a way to deal with it. He needs you."
The crazy thing is, he knew exactly what I needed to hear. It's like I always knew his condition wouldn't go away, but to have someone look at my tear stained face and tell me that. Whoa. It was too late to be considered post-pardum depression, but he contributed my anxiety to the fact that for the first time since Parker was born I was home...alone. Every emotion and little bit of experience I had with his situation hit me like a ton of bricks at once! There weren't any distractions. When he was in the hospital I never worried about myself or what I was feeling or dealing with. I worried about him and what he was feeling and dealing with. So, in hindsight I should have taken care of me, too. My doctor is right, I am not good to him if I am not good. Lesson learned.
I continue to live the fear of him relapsing every day. To ease my mind we've become part of an early intervention program. Since we've last chatted Parker has had the amazing opportunity to welcome new people to his inner circle. By inner circle, I mean therapists. He gets to play with them every week and for the most part he genuinely likes it.
Being a part of this program was the best decision Casey and I ever came to. Granted, it's admitting your child has a level of developmental delay. However, denying it does NO GOOD.
Did I cry about this? Sure did.
Do I continue to cry about it? Sure do.
It's hard seeing your baby struggle. I hate it! If he has a bad session I almost always cry to my husband. I just want him to do good and not struggle. It's like his little brain gets it, but his body just can't do it. It frustrates him and he gets upset. Ultimately it's heartbreaking. I just wish he got it naturally like every other baby. However, wishing doesn't make it so. It is what it is.
BUT can I tell you how amazing his care team is? They do not judge and they love my baby! When he cries they hug him and love him and as a mother that is exactly what I want him surrounded with. It is the kind of encouragement and support he doesn't always get from typical medical staff. Plus they come to our home so Parker is in his "comfort zone." He sees the same faces every time and even gives them that contagious smile when they walk in.
I hate that we are in this situation, but I love that there is a program out there for people like us. It's so important, when faced with a diagnosis like we had, to tap into those resources social workers give you in the hospital. If we hadn't chatted with her, we never would have known this even existed. They will follow Parker until he is 3 and then, if need be, there are other programs he can be a part of. Why not? These therapists have a trained eye and his best interest in mind. Never hurts to try and worth every penny. They are there for literally everyone as long as the diagnosis qualifies.
Being a first time mom I will admit that though some things do come natural, a lot does not. I had no clue some of the things he should be doing at this point.
Some examples.
1. Picking up objects with his fingers and not palm. --> Whoops.
2. Eating some table food. --> Hmmm...
3. Crawling. -->Dangit!
4. Clapping. --> Well...almost so we will count it!
5. Pooping on the toilet. --> Just kidding!
I've cried over the "What Your Baby Should Be Doing" list a lot. So many people tell me that babies are different and will do it when they do it. Well, that is very true for a lot of babies. However, our baby has a neurological condition. I know he will do it when he does it, but at the end of the day, he might not. No doubt he needs to be taught and given a little extra push than most babies. I don't want to say he's different, but he is different! There isn't really a DIFFERENT way to say it. Grrr...
He throws up. He cries. He gets fevers. Every single time I naturally get a little nervous. It's so hard to figure out what is his condition and what is normal baby ick. Seeing how he can't tell me what's wrong yet, I play the guessing game a lot. I don't want to be one of those moms that rushes to the pediatrician or ER with every ailment so I usually call my husband and we go through the steps of our Hydro Checklist! :-)
- Fever?
- Vomiting?
- Fatigue?
- Irritability?
Those are sure signs of something going on with his Hydrocephalus. However, those are also signs of, oh I don't know, a little thing we like to call the FLU. So at the end of the day it's all about tapping into those instincts and just taking a deep breath. We've had one pediatrician visit this summer because Parker had a horrible cough and runny nose that kept him (and us) up all night. We sure did high five when it was just allergies. YES! No brain surgery or hospital stay! Obviously we knew it was something related to a cold or allergies since he was sneezing and coughing, but we honestly never know what diagnosis he has that will land him in the hospital. Darn shunt.
I hate to see him sick, but he needs to get sick. I can't keep him germ-free in our little bubble forever. So, I let my guard down...a little. Let's be real. Sure do cover and sanitize everything in public. WASH YOUR HANDS PEOPLE. I know for a fact people don't wash their hands after they go to the bathroom. No thank you.
"Yes he is cute. Go wash your hands."
Parker is still a major creep with the ladies so he attracts a lot of attention where-ever we go. Major flirt. He has spontaneous giggles when he sees pretty ladies. It's really hysterical, but when he keeps doing it, creepy. I really, really hope he outgrows this nervous giggle otherwise Parker will never survive around the ladies. For now he gets away with it because he is so darn cute!
So, in a nutshell we have been busy, but overall, good. We still have our challenges every day, but man are surrounded by great people to help us fight. One more thing, did you know that September is Hydrocephalus Awareness Month? Did you know that 1 in 500 children will be affected by this condition? That is too much! Do Parker and other Hydro Warriors a favor...wear blue one time this month and tell someone, anyone, why! With a little more awareness the possibility, or in this case the shuntability, of research and funding would increase dramatically. Awareness Matters. Wear Blue.
