I am going to put a small disclaimer in this post. These are MY beliefs. This is MY journey. I am sharing my journey with all of you in hopes that you will gain a little more understanding on my son's conditions and how they affect our family. I also do this because many people have reached out to me because by sharing this crazy journey they have somehow found inspiration or hope to fight their battles. Some of these people are right here in this community and some of these people are complete strangers to me. So, I keep going. Sometimes it's pleasant and sometime's it's not. I don't expect everyone to agree with what I have to say. However, this is real life folks. I do not sugar coat a thing here. In order to understand my journey I believe I have to be 100% transparent.
That being said there are many, many theories on the ever controversial autism subject. I hate autism. I absolutely hate it. I hate the subject. I hate the condition. I hate that is affects so many people and no one understands it. Hell, I don't even completely understand it. It's exhausting, awful, terrible, and happens to affect someone I love with my entire heart.
Here are the facts.
Parker did not get autism because I was living in a polluted area or ate certain things when I was pregnant. Parker did not get autism because I had him vaccinated. Parker did not get autism from his dietary preferences. Parker did not get autism because we were bad parents.
The best doctors in the state feel fairly confident that Parker got autism because he suffered a traumatic brain injury at birth. Our sweet boy was born with a Grade IV Brain Bleed and acquired Hydrocephalus as a result. He has had more brain surgeries than birthdays. How can a child who's brain is so complex and healing not suffer some consequence?
He has been high risk for autism his entire life, a fact that we did not know until recently.
So, right when the storm settles and the rainbow starts to appear again something bad happens. Another storm was on our horizon and it would be earth shattering and just as devastating to hear as all of the other diagnosis we've heard. It never gets easier.
It. Never. Gets. Easier.
I have become numb in many ways. You sit me down and show me where he is developmentally and where he should be...doesn't phase me. You take his blood or start an IV...also doesn't phase me. I've heard his cries and screams because of medical procedures or just therapies he didn't want to do. I've become numb in many ways to all of that. I am so not numb with this. I feel every feel from the top of my head to the tips of my toes. This diagnosis phased me.
It shattered me.
Parker has been in various therapies since he was 6 months old. I have always known he wasn't like other kids, thank you Facebook. Of course, I knew why. He's been through so much in his short life. There was always something about him that felt off even with Hydrocephalus. Mom's have a gut instinct and my gut told me he had autism. I first felt it when he was 1 year old.
Parker had been followed by the university hospital after his NICU stint. It was there that they would monitor his development every so often and give us guidelines. Well, right around 16 months she saw some red flags and sent us to the center for disability and development. I knew. I just KNEW. I started bawling my eyes out.
"Caitlin, you cry. You can and should grieve for the child you thought you were going to have and the child you actually have. You can grieve for him and his future. It's okay," she said.
At that point I had not once grieved. I didn't think I should. It's not like he was dying, but my hopes (at that time) were dying. I mean it's awful to say, but they would never be a possibility. I know that now and I am still learning how to be okay with that. Parker's life was going to be so hard. Our lives were going to be so hard. It sucked and still does suck to be honest.
Well, at that appointment they told us he did not have autism! We were shocked! They said he was just delayed and had some sensory seeking behaviors, but it wasn't autism. I was relieved, but at the same time, super skeptical. Of course, I am not a doctor and sometimes I like to pretend I am, but we all know that I have a business degree. A business degree does not make me a medical doctor, now a black belt in Hydrocephalus maybe....
Fast forward several agonizing months later and we did get a doctor who like felt something was off. Parker's therapy never stopped in between appointments, but he just kept regressing right before our eyes. Was he being naughty? Did he not feel well? Something was definitely off.
So, in the same same clinic, same department, we met with a Neuro Psychologist and we were meeting him in hopes of some learning disability diagnosis. He started the test with Parker and I knew instantly he saw red flags. He went and got a different test booklet. Me in my ever stalking and research crazy personality recognized the booklet. It was a test administered to children Parker's age to help diagnose autism. Not going to lie, I had already given this test to Parker at home through the help of a website. He failed. I knew he was autistic going into this appointment. Tears instantly filled my eyes and my husband looked at me like I was losing my damn mind. I knew it! I knew this was coming.
He "diagnosed" Parker as "High Risk" for autism. The doctor said he was going to be conservative in his diagnosis because of the trauma he had been going through. He was just 2 years old at the time. Parker had brain surgery a couple months before his second birthday and then right after his second birthday what little vocabulary he had was gone. It seemed like he was constantly sick, constantly getting new teeth and the poor kid just wasn't himself. The doctor wanted to give him more time.
Parker has never been a talker, ever. He has never pointed, used gestures or anything. His hearing has always been perfect. Basically, what I am trying to say, Parker had a very low baseline to start with. It's not like the typical story you hear, "my son or daughter was singing and talking up a storm and then when they turned 2 it all stopped."
Parker never did those things so... I suppose it's a little easier on our hearts because we never had a child that we lost in those ways. I cannot imagine the pain and angst those parents must feel. My heart goes out to each and every one of them.
Some of his behaviors are rather odd. They are normal to us because we don't know it any different, but I am not blind to the stares that we get while we are out in public. Yes he has a shunt on top of his head. Yes he has several scars on his head. Now we have "stims" that people can't help but watch. He moves his fingers together. He moans and ticka tickas and eeee eeeees, all while jumping around on his tippy toes.
We LOVE his ticka tickas and EEEEEs! Those are happy Parker sounds. When I hear them on the baby monitor I can't wait to look over onto the screen and see those arms flapping away and legs swaying in the air with that huge grin on his face.
Unfortunately it seems like we are still wading through uncharted territory and most of our experiences are gut wrenching. The first time his autism really got to me was at my cousin's first birthday party. The party was in an open area, no music. There was a pretty good size group of people there for the festivities. My cousin had decorated the entire place and had balloons on each table. Parker freaked out. He was crying and my dad and stepmom had to take him outside to walk around because he could not handle it. They took him because I could not handle it. My poor cousin had to put all of the balloons in a closet, away from Parker so he could come back in. I was so embarrassed and ...confused. She was un-phased, God love her.
Why was this a trigger for him? Triggers. A new word to our Parker vocabulary. He has just a couple triggers, not many thank goodness. The kid is terrified of swings. He won't sit on them and he doesn't like it when we sit on them. Apparently a common problem for children on the spectrum. Another word for our vocabulary. Spectrum.
Honestly we are still in the flash card studying phase of understanding autism and it's definitions. We are not yet ready for the test!
Parker doesn't sleep at night. Parker doesn't use utensils to eat or take bites off of food. Parker doesn't color, paint, use scissors or string beads. Parker can't dress himself or take off his socks. Parker doesn't play with toys or "read" books like many kids his age do. Parker doesn't sign or gesture. Parker can't tell me that he's sick, cold or hungry. Parker doesn't talk.
I dream about the day where I could maybe hear what his voice would sound like. I dream about the day where he could tell me that he loves his momma.
It's not that he won't do these things...he just can't...yet. I have to remain optimistic that he will do some of those or all of those things. Who the heck knows, right? I know he wants to. I know he does. It frustrates him so much when we don't understand what he's trying to tell us. It's just wrapping your brain around the fact that he may not do those things. If only I had that crystal ball...I know he may not ever do some of those things. I have to accept that reality.
I constantly remind myself it could be so much worse and it sooo could be. There were moments when I wasn't sure that I would ever kiss his sweet face again. I have him in my arms every single day and I know parents who have lost their children would take "a Parker" and all of his issues over losing a piece of their heart. We are so blessed, so incredibly blessed to have him in our lives.
His smile melts my heart and his laugh is contagious. He loves to take my hands and place them on his face. He also rubs his face on my face and just laughs and laughs. Weird behavior yes, but it is totally his way of telling me that he loves me. I just know it! It's Parker and I love all of him, even the stuff I don't understand. He loves when his Daddy comes home from work and he gets a big ole bear hug, even if he doesn't hug back, we know he loves it. We will love him and give him the affection he needs and deserves. Have you ever seen him? He's adorable and how can you not kiss those cheeks! Gah!!!!
However, as all things in our lives I would be lying if I didn't say that jealousy plagues us. It rears it's ugly head at playgrounds, school drop offs and social media. It's so hard to not focus on the things he doesn't do when you are constantly reminded of the things he could be doing. It's heartbreaking. Parker is learning how to use playground equipment and it's so fun to watch him explore. He will, however, always prefer a pile of leaves, puddles, or rocks to a slide. It's just the reality of him.
Will he blow out his birthday candles this year? Will he open up presents at Christmas? Probably not. I know this, but that doesn't make it any easier. We give Parker the opportunity to do everything kids his age do. I would say 99% of the time he won't do it and it is like salt being poured into our existing wounds. As parents we weren't yet healed from his Hydrocephalus and then we got struck with this. It is safe to say I have been a woman on the edge of insanity quite a bit lately.
I wish people understood everything we have done and continue to do for Parker. We are trying so, so hard to make this life better for him. I acted like a complete psychopath in the principle's office already and he's in preschool. It was like I had three eye balls. Why doesn't this make sense to the general public? I don't understand. I have learned that it isn't that people don't care, it's just that they don't understand autism and Hydrocephalus and shunts, etc...and what we have/want to do on a daily basis. His condition is so much more complicated because he can't verbalize a single thing. It's dangerous and we have to be on top of everything all the time. He needs an advocate and as luck would have it he has a mom who is a nerd and never shows up without a power point presentation to support her arguments.
I am building up my arsenal of resources and with time I hope to dominate this world as much as I dominate the Hydro world. I've reconnected with a high school classmate who has been my sounding board and inspiration (she probably doesn't know that, but she inspires me every single day). Her advice is gospel to me! I've cried, cussed and been my worst person in messages to her. Best part, I don't even think she cares because she too has been down this unfortunate journey with her son.
I just can't believe that something like this had to happen to sweet Parker, again. I can't dwell on it, I know, but I am still grieving. Right now, typing this all out, I can barely breath because the reality of our situation continues to take my breath away. My biggest hurdle right now is finding resources in our small area to help the complex child he has turned out to be. I didn't think he was "that" complex. Surely they've seen kids like him before. WRONG. We've reached plateaus with almost every single therapist locally. It's exhausting. To think Parker lives in a world where we can't find anyone to understand or help him.
My husband and I try not to think about Parker's life when we aren't on this earth anymore. The idea of him being out there in this world without us scares me to death. I won't lie to you. It keeps me up at night. Who will take care of him? Who will buy him Doritos!? For the love of God what will he do if he doesn't have Doritos. It won't be pretty! I pray his sister has a big heart and will make sure her brother is loved, even if she can't be the primary, and I do not expect her to be, she can find a safe place for him. I just pray he has a safe place to lay his head every night. I can't even think about it right now because I will cry! Tears are forming right now. It is my biggest fear.
I don't know how to end this post. That must mean it's not ready for an ending. I have so much left to figure out and learn. We are at this time exhausted, but there is always light at the end of the tunnel. It's hard right now, because we just can't see that light. This tunnel is dark and the end is nowhere in sight. We will continue to fight for him and never ever give up. We will give him every single resource we can get our hands on to help him.
At the end of the day, Parker is so happy. He is such a happy child, without a care in the world. He knows he's safe and loved endlessly. Parker seems to have fun doing the simplest of things and we are very blessed for that. He enjoys jumping on his trampoline in front of the TV, playing in his sensory bin, watching the Little Mermaid 203038939203 times, and snuggling with us. He doesn't require material possessions, just love...and Doritos.
Tuesday, October 24, 2017
Friday, September 15, 2017
Isn't 1 ENOUGH?!?
This is quite strange. I started this blog post about a week before Parker had his seizure episode. I was juuuust about ready to post it, then that happened, which is obviously way better material. ;-)
Anyway, this is something we get asked a lot. In fact, I think many doctors are shocked that we even went for round 2, but we did.
We are in Parker's Neurosurgeon's office a couple weeks ago. "This is...your baby?"
"No we found her on the way in. We decided to just bring her to this appointment because it's fun to bring infants to Neurosurgeon's offices." EYE ROLL Not to mention she looks JUST like her brother. For the love of God.
He says, "And she is...okay"?
I say, "Ugh yes. she is okay..or maybe not because she appears to really be enjoying herself here."
So that being said....how do you know? HOW DO YOU KNOW? That is the question Casey and I had been asking ourselves for well over a year. The subject...try for another baby. When you have a child with special needs how do you know if it's okay to have another one? Is it risky? Hell yes it's risky. We would be playing Russian Roulette big time.
When we had Parker so many things went wrong during delivery. After some time we needed closure and the doctor who delivered Parker was all sorts of incapable of doing that. When Parker was about 1 1/2 years old a specialist at the university hospital reviewed our delivery file and took on our case to discuss what happened. Was it my fault? For so many months I took direct responsibility for what happened to Parker. I made the decision to have an induction. I didn't speak up to the doctor when I knew something was wrong in delivery. I was so naive it was ridiculous. If I could go back in time and slap myself silly I so would. As a mother I will forever carry the guilt of his condition no matter what anyone says.
At the end of the day, the doctor did say that she would have approached the delivery differently after some things went wrong. Ultimately, I had contracted an infection in my uterus and they believed that Parker got a fever and brain bleed from the infection. It's so hard to know and really we were hoping for some reassurance that we would someday have the opportunity to have another baby. There are some things no one will ever know and how Parker got a Grade IV brain bleed as a full term and seemingly healthy baby is unfortunately one of them. They did say that there was a 1 in 10,000 chance that something like this would happen again. It seems like a lot, but if you've walked a mile in my shoes it didn't quite feel like enough. I wanted like 1 in 1,000,000.
So we put having a baby on the back burner. The idea terrified both of us. What if we had another baby and the same thing happened? What if my uterus just hates babies and I get another infection? The "what if" scenarios are endless. It takes us back to the question, "how do you know"?
Parker does not communicate. It isn't like we could have this conversation with our 3 year old.
"Parker, are you ready to be a big brother"?
He'd reply, "OH YES Mom! That's all I've ever wanted!"
Yeah right...
Having another baby in our situation almost felt a little selfish as well. Were we just hoping for the experience everyone else seems to have? I mean, I'm not going to lie. I felt cheated. I did every single thing right when I was pregnant. I didn't even eat lunch meat for crying out loud. Delivering Parker and the aftermath was one of the worst experiences of my life. Just because I wanted what other people had didn't seem like enough of a reason to have a baby and we know better than anyone else that having a healthy baby is not a guarantee. There are zero guarantees.
Fast forward a year...we brought it up again. Here we had this beautiful house with extra bedrooms and no kids to fill them. Parker's condition had been the most stable it had EVER been for a long period of time ( I totally should have knocked on wood at this point in my story). My husband was bringing up the "baby talk" a lot. I was listening...scared out of my ever loving mind, but listening. The truth was, we were in a great place to have another baby and we aren't getting any younger here.
I am a deep thinker in the shower. Any others out there? It's like the most serene place to just think, pray and obviously sing. One day in early October I remember feeling lost. I was showering trying to relax and clear my head. I then started praying out of nowhere.
"God, I know you have a plan. I have no idea what that plan is and I'm trying so hard to be okay with that. All I ask of you is that if I am supposed to carry another child, bless me with good health and this baby with good health. I have a special son who needs me. If this is what is supposed to happen then I will trust your journey."
I have never in my entire life felt closer to Him. It was like I was having a one on one conversation with him and his ear was hearing just me at that moment. I felt at the most peace I'd felt in a long time.
Just a couple short weeks later I had a positive pregnancy test.
It's just crazy how things work out. One month of "trying" and boom. Pregnant. My husband says it best, "it was meant to be". My pregnancy was good. I was sick out of my mind for a majority of it, but it was good. We had one scare where our 20 week scan showed a cyst in the baby's ventricle.
We knows brains. Man do we ever know brains. This TERRIFIED ME. I lost so many hours of sleep over this. Tears were endless. I could not believe that this would happen to us, again. Was this some kind of mean test? If it was I failed because I was so angry. I mean, I had that conversation with God in the shower. My holy place. COME ON! Good news, we already had an incredibly skilled Neurosurgeon who could hopefully take care of the problem at birth. We could do this. We did it before and we could do this. At least this time we knew it was coming.
So, my OB knows I'm crazy. He knew what happened before and had so much empathy and care for me. I seriously cannot speak about him highly enough. Because of our situation he said he didn't want to take any chances with this pregnancy and he sent us to the university for a more detailed ultrasound and they found that it had dissolved. Whew. Casey then took me to Target to celebrate because, duh, Target.
Casey wanted to start painting the nursery and I wouldn't let him. I couldn't let myself get excited about this pregnancy. Even at 39 weeks I couldn't let my guard down for one moment. Something had to go wrong. It just had to. It's hard to describe, only that it was somewhat like "prepartum" depression. Well my due date came and no baby. God knows I wasn't going to induce this time. Come hell or high water I was going to deliver this baby with NO induction.
"Caitlin, if this baby isn't here by next week we will have to plan an induction," Dr. L said.
Commence tears.
So, he was basically giving me until the week of July 4th. In my mind I knew the baby wouldn't come because nothing is ever that easy, so I set myself up mentally to have the induction at 41 weeks.
On June 29, one day after my due date I went into labor at home, unknowingly I might add. At about 3AM I woke up with some pain and wasn't able to go back to sleep. I told my husband they were just Braxton Hicks and to go to work.
"Caitlin please use the contraction timer and call me if anything changes," he said.
I replied, "OK! OK! I will call you, but I am not making a fool of myself again this week."
Did I mention I went to the hospital the week before because they thought my water broke? I was basically peeing myself. OH the joy.
"Aww no baby! See you next week", the hospital volunteer shouted.
"Yep. Next week (yeah right)."
Well, exactly one week later I was in this "are these contractions or aren't they" predicament. I decided to start using my timer and thought to myself, "Ouch. These are pretty intense. I think that was a real one. Better mark it."
"Ouch."
"OOOOUUUUUCCCCHHHH!"
"Oh sweet Jesus!"
Contraction Timer Read: GO TO HOSPITAL
No joke. This was my life at like 5AM. Then all of the sudden on the baby monitor I hear Parker throwing up. In his bed.
I run in there, "Oh God. Oh my God, OUCH. Oh my God. Parker. Ouch. Parker! Ouch."
It was nothing short of a disaster and everything I feared in one moment. My biggest fear was that Parker would get sick or need surgery when I was in labor or in the hospital with the new baby. I swear this child had to make it about him to the very last minute.
"Uh, Casey I need you to come home, like now," I cried, literally crying.
He said, "I TOLD YOU I SHOULDN'T HAVE GONE! Why are you so stubborn!"
Fifteen minutes later he comes in guns a blazin, making me all sorts of nervous. He throws our bags in the car, Parker in the car and thankfully he remembered me. We dropped a sick Parker off at his grandparents (who answered the door all sorts of confused at dawn).
"Go have a baby," Casey's' stepfather yelled.
Yes that is the plan! I wasn't nervous about what could go wrong. For the first time I wanted that baby out, like now.
"OH MY GOD Casey slow down. Please don't get a ticket. Oh man, OUCH. I'm fine we have plenty of time my contractions are only like 7 minutes apart!"
3 minutes later...
"GAHHH OH MY...."! Use your imagination.
So, we made it. Casey took turns on two wheels.
I was officially in labor and as luck would have it, my OB was on call. He was there ALL DAY. To make things even better our favorite nurses were there too. As if that wasn't enough, our Pediatrician was on call too! I mean, come one!
Being a day late was fate!
There was a time right before delivery that I freaked out. I thought it was going to be this long drawn out process, you know, like the shit show I had with Parker. I started pushing and the nurse went and got the doctor. I panicked.
"I'm scared. I'm so scared," I cried.
She said, "Look at me! LOOK AT ME! You can do this!"
So, I looked at her and I pushed. I pushed and then the doctor said, "Okay Caitlin, this next push you are going to have a baby!"
I was in shock, "WHAT!"
I mean, why was I there? For the love of God I was there to have a baby. So with the help of an amazing team and my doctor's obsession with AstroGlide (no joke) our sweet little Paisley made her debut with zero complications and without much effort honestly.
After she was born I was in some sort of strange universe. She was here.
"What's her temperature? Is she okay?" I asked.
The pediatrician's shoes were under the curtain the entire time so he made his appearance and probably saw more of me than he wanted to. Turns out you don't care. He examined her and said she was perfect, I do recall he called her a brute because she is. She was 9 pounds 2 ounces of perfection.
Was this real life? Did I just have the best birth experience ever? The answer is yes. June 29 was hands down one of the BEST days of my entire life. We were able to give Parker a little sister who will no doubt run this house in no time. She is everything opposite of her brother: loud, demanding and obviously female.
When I was alone with her for the first time I prayed with her and thanked God for this precious experience and more importantly this beautiful baby girl. As a special needs parent it's hard to know "when" and the what if's will keep you up at night. It will be alright. Keep the faith and surround yourself with supportive people. If your baby is planned or a surprise - it's scary no matter what.
I have no idea how Parker and Paisley will get along. Right now, he's in his own little world and doesn't acknowledge her much. It is our hope that she will develop a relationship with her brother. She will teach him and guide him. Right now her cry pesters his senses and favorite TV shows. So they aren't friends just yet.
The fears from our past disrupt our hopes for the future. We find ourselves holding our breath until that baby screams, or the days or weeks pass and the baby continues to develop normally. I am STILL holding my breath for every appointment she has or every weird baby thing she does. We are real because we have to be. We've lived most parents' biggest nightmares and you know what we survived. That's who we've become and that's okay. We are survivors. I am so proud to be the woman I've become. I like her.
I mean come on, I had to face my fear head on when I went into labor. I was like 30 seconds into this whole second kid thing and my child with a serious medical condition was sick and turns out it was the beginning of something serious that would rear it's ugly head just a couple months later. Casey had to remind me while I was in labor that I needed to focus on the task at hand. I never thought it would be possible, but I did it. Guess what, Parker was fine. He was a little out of sorts, but he was fine. A couple weeks ago I had to focus on Parker and I worried endlessly about Paisley. Also, guess what, she was fine. I still have a lot of learning to do here, but I'm treading along.
I can't imagine what life would be like without our sweet Paisley. I can't let my experience with Parker affect my experience with her. I can't live as if every single day something bad will happen to her. I vowed to the Pediatrician I would not measure her head, take her temperature excessively and check WebMD (much). They are different children. She will upset us in ways Parker doesn't and probably in ways that he does, too. Who knows! It's hard, but you have to GO WITH THE FLOW and not cry over spilled milk, unless it's breast milk, then ya know go ahead and cry.
At the end of the day, if I would have let my fears run my life she wouldn't be here. My advice, keep the faith, stay informed and be an advocate for yourself. As always, it will all be okay. Just roll with it.
Anyway, this is something we get asked a lot. In fact, I think many doctors are shocked that we even went for round 2, but we did.
We are in Parker's Neurosurgeon's office a couple weeks ago. "This is...your baby?"
"No we found her on the way in. We decided to just bring her to this appointment because it's fun to bring infants to Neurosurgeon's offices." EYE ROLL Not to mention she looks JUST like her brother. For the love of God.
He says, "And she is...okay"?
I say, "Ugh yes. she is okay..or maybe not because she appears to really be enjoying herself here."
So that being said....how do you know? HOW DO YOU KNOW? That is the question Casey and I had been asking ourselves for well over a year. The subject...try for another baby. When you have a child with special needs how do you know if it's okay to have another one? Is it risky? Hell yes it's risky. We would be playing Russian Roulette big time.
When we had Parker so many things went wrong during delivery. After some time we needed closure and the doctor who delivered Parker was all sorts of incapable of doing that. When Parker was about 1 1/2 years old a specialist at the university hospital reviewed our delivery file and took on our case to discuss what happened. Was it my fault? For so many months I took direct responsibility for what happened to Parker. I made the decision to have an induction. I didn't speak up to the doctor when I knew something was wrong in delivery. I was so naive it was ridiculous. If I could go back in time and slap myself silly I so would. As a mother I will forever carry the guilt of his condition no matter what anyone says.
At the end of the day, the doctor did say that she would have approached the delivery differently after some things went wrong. Ultimately, I had contracted an infection in my uterus and they believed that Parker got a fever and brain bleed from the infection. It's so hard to know and really we were hoping for some reassurance that we would someday have the opportunity to have another baby. There are some things no one will ever know and how Parker got a Grade IV brain bleed as a full term and seemingly healthy baby is unfortunately one of them. They did say that there was a 1 in 10,000 chance that something like this would happen again. It seems like a lot, but if you've walked a mile in my shoes it didn't quite feel like enough. I wanted like 1 in 1,000,000.
So we put having a baby on the back burner. The idea terrified both of us. What if we had another baby and the same thing happened? What if my uterus just hates babies and I get another infection? The "what if" scenarios are endless. It takes us back to the question, "how do you know"?
Parker does not communicate. It isn't like we could have this conversation with our 3 year old.
"Parker, are you ready to be a big brother"?
He'd reply, "OH YES Mom! That's all I've ever wanted!"
Yeah right...
Having another baby in our situation almost felt a little selfish as well. Were we just hoping for the experience everyone else seems to have? I mean, I'm not going to lie. I felt cheated. I did every single thing right when I was pregnant. I didn't even eat lunch meat for crying out loud. Delivering Parker and the aftermath was one of the worst experiences of my life. Just because I wanted what other people had didn't seem like enough of a reason to have a baby and we know better than anyone else that having a healthy baby is not a guarantee. There are zero guarantees.
Fast forward a year...we brought it up again. Here we had this beautiful house with extra bedrooms and no kids to fill them. Parker's condition had been the most stable it had EVER been for a long period of time ( I totally should have knocked on wood at this point in my story). My husband was bringing up the "baby talk" a lot. I was listening...scared out of my ever loving mind, but listening. The truth was, we were in a great place to have another baby and we aren't getting any younger here.
I am a deep thinker in the shower. Any others out there? It's like the most serene place to just think, pray and obviously sing. One day in early October I remember feeling lost. I was showering trying to relax and clear my head. I then started praying out of nowhere.
"God, I know you have a plan. I have no idea what that plan is and I'm trying so hard to be okay with that. All I ask of you is that if I am supposed to carry another child, bless me with good health and this baby with good health. I have a special son who needs me. If this is what is supposed to happen then I will trust your journey."
I have never in my entire life felt closer to Him. It was like I was having a one on one conversation with him and his ear was hearing just me at that moment. I felt at the most peace I'd felt in a long time.
Just a couple short weeks later I had a positive pregnancy test.
It's just crazy how things work out. One month of "trying" and boom. Pregnant. My husband says it best, "it was meant to be". My pregnancy was good. I was sick out of my mind for a majority of it, but it was good. We had one scare where our 20 week scan showed a cyst in the baby's ventricle.
We knows brains. Man do we ever know brains. This TERRIFIED ME. I lost so many hours of sleep over this. Tears were endless. I could not believe that this would happen to us, again. Was this some kind of mean test? If it was I failed because I was so angry. I mean, I had that conversation with God in the shower. My holy place. COME ON! Good news, we already had an incredibly skilled Neurosurgeon who could hopefully take care of the problem at birth. We could do this. We did it before and we could do this. At least this time we knew it was coming.
So, my OB knows I'm crazy. He knew what happened before and had so much empathy and care for me. I seriously cannot speak about him highly enough. Because of our situation he said he didn't want to take any chances with this pregnancy and he sent us to the university for a more detailed ultrasound and they found that it had dissolved. Whew. Casey then took me to Target to celebrate because, duh, Target.
Casey wanted to start painting the nursery and I wouldn't let him. I couldn't let myself get excited about this pregnancy. Even at 39 weeks I couldn't let my guard down for one moment. Something had to go wrong. It just had to. It's hard to describe, only that it was somewhat like "prepartum" depression. Well my due date came and no baby. God knows I wasn't going to induce this time. Come hell or high water I was going to deliver this baby with NO induction.
"Caitlin, if this baby isn't here by next week we will have to plan an induction," Dr. L said.
Commence tears.
So, he was basically giving me until the week of July 4th. In my mind I knew the baby wouldn't come because nothing is ever that easy, so I set myself up mentally to have the induction at 41 weeks.
On June 29, one day after my due date I went into labor at home, unknowingly I might add. At about 3AM I woke up with some pain and wasn't able to go back to sleep. I told my husband they were just Braxton Hicks and to go to work.
"Caitlin please use the contraction timer and call me if anything changes," he said.
I replied, "OK! OK! I will call you, but I am not making a fool of myself again this week."
Did I mention I went to the hospital the week before because they thought my water broke? I was basically peeing myself. OH the joy.
"Aww no baby! See you next week", the hospital volunteer shouted.
"Yep. Next week (yeah right)."
Well, exactly one week later I was in this "are these contractions or aren't they" predicament. I decided to start using my timer and thought to myself, "Ouch. These are pretty intense. I think that was a real one. Better mark it."
"Ouch."
"OOOOUUUUUCCCCHHHH!"
"Oh sweet Jesus!"
Contraction Timer Read: GO TO HOSPITAL
No joke. This was my life at like 5AM. Then all of the sudden on the baby monitor I hear Parker throwing up. In his bed.
I run in there, "Oh God. Oh my God, OUCH. Oh my God. Parker. Ouch. Parker! Ouch."
It was nothing short of a disaster and everything I feared in one moment. My biggest fear was that Parker would get sick or need surgery when I was in labor or in the hospital with the new baby. I swear this child had to make it about him to the very last minute.
"Uh, Casey I need you to come home, like now," I cried, literally crying.
He said, "I TOLD YOU I SHOULDN'T HAVE GONE! Why are you so stubborn!"
Fifteen minutes later he comes in guns a blazin, making me all sorts of nervous. He throws our bags in the car, Parker in the car and thankfully he remembered me. We dropped a sick Parker off at his grandparents (who answered the door all sorts of confused at dawn).
"Go have a baby," Casey's' stepfather yelled.
Yes that is the plan! I wasn't nervous about what could go wrong. For the first time I wanted that baby out, like now.
"OH MY GOD Casey slow down. Please don't get a ticket. Oh man, OUCH. I'm fine we have plenty of time my contractions are only like 7 minutes apart!"
3 minutes later...
"GAHHH OH MY...."! Use your imagination.
So, we made it. Casey took turns on two wheels.
I was officially in labor and as luck would have it, my OB was on call. He was there ALL DAY. To make things even better our favorite nurses were there too. As if that wasn't enough, our Pediatrician was on call too! I mean, come one!
Being a day late was fate!
There was a time right before delivery that I freaked out. I thought it was going to be this long drawn out process, you know, like the shit show I had with Parker. I started pushing and the nurse went and got the doctor. I panicked.
"I'm scared. I'm so scared," I cried.
She said, "Look at me! LOOK AT ME! You can do this!"
So, I looked at her and I pushed. I pushed and then the doctor said, "Okay Caitlin, this next push you are going to have a baby!"
I was in shock, "WHAT!"
I mean, why was I there? For the love of God I was there to have a baby. So with the help of an amazing team and my doctor's obsession with AstroGlide (no joke) our sweet little Paisley made her debut with zero complications and without much effort honestly.
After she was born I was in some sort of strange universe. She was here.
"What's her temperature? Is she okay?" I asked.
The pediatrician's shoes were under the curtain the entire time so he made his appearance and probably saw more of me than he wanted to. Turns out you don't care. He examined her and said she was perfect, I do recall he called her a brute because she is. She was 9 pounds 2 ounces of perfection.
Was this real life? Did I just have the best birth experience ever? The answer is yes. June 29 was hands down one of the BEST days of my entire life. We were able to give Parker a little sister who will no doubt run this house in no time. She is everything opposite of her brother: loud, demanding and obviously female.
When I was alone with her for the first time I prayed with her and thanked God for this precious experience and more importantly this beautiful baby girl. As a special needs parent it's hard to know "when" and the what if's will keep you up at night. It will be alright. Keep the faith and surround yourself with supportive people. If your baby is planned or a surprise - it's scary no matter what.
I have no idea how Parker and Paisley will get along. Right now, he's in his own little world and doesn't acknowledge her much. It is our hope that she will develop a relationship with her brother. She will teach him and guide him. Right now her cry pesters his senses and favorite TV shows. So they aren't friends just yet.
The fears from our past disrupt our hopes for the future. We find ourselves holding our breath until that baby screams, or the days or weeks pass and the baby continues to develop normally. I am STILL holding my breath for every appointment she has or every weird baby thing she does. We are real because we have to be. We've lived most parents' biggest nightmares and you know what we survived. That's who we've become and that's okay. We are survivors. I am so proud to be the woman I've become. I like her.
I mean come on, I had to face my fear head on when I went into labor. I was like 30 seconds into this whole second kid thing and my child with a serious medical condition was sick and turns out it was the beginning of something serious that would rear it's ugly head just a couple months later. Casey had to remind me while I was in labor that I needed to focus on the task at hand. I never thought it would be possible, but I did it. Guess what, Parker was fine. He was a little out of sorts, but he was fine. A couple weeks ago I had to focus on Parker and I worried endlessly about Paisley. Also, guess what, she was fine. I still have a lot of learning to do here, but I'm treading along.
I can't imagine what life would be like without our sweet Paisley. I can't let my experience with Parker affect my experience with her. I can't live as if every single day something bad will happen to her. I vowed to the Pediatrician I would not measure her head, take her temperature excessively and check WebMD (much). They are different children. She will upset us in ways Parker doesn't and probably in ways that he does, too. Who knows! It's hard, but you have to GO WITH THE FLOW and not cry over spilled milk, unless it's breast milk, then ya know go ahead and cry.
At the end of the day, if I would have let my fears run my life she wouldn't be here. My advice, keep the faith, stay informed and be an advocate for yourself. As always, it will all be okay. Just roll with it.
Saturday, September 2, 2017
A New Bump in the Road...Actually More Like a Hill
Irony is never really lost on me. I tend to have more ironic moments in my life than the average Joe. Once I decided to update this blog I wrote this whole article on having a special needs child and deciding to have another child. You know, the risks and emotions that go along with it, etc.., etc... I saved the blog post and told myself I'd post it last week after I could proof read it. I will be honest. I write every single one of these posts with a little bit of wine in my system. Needless to say, going back to edit is crucial. We aren't talking grammar errors, we are talking utmost honesty. :-) Liquid courage can sometimes be damaging! Ha!
Those of you who know me personally know I am WAY more fun with a glass of wine in my system.
Anyway, last Sunday I was prepping for the busy week we were to have ahead of us. Parker had school and therapy, we had several appointments (one being my hair go figure), and I just like to be organized. I am still on maternity leave so I am really trying to get us on a schedule to work when I go back to work. Parker had his nighttime snack of crackers and milk before bed, as he always does. I tucked him and he reached up to give me a goodnight kiss, something new he has been doing with Casey and I. Let me tell you that little bit of affection he gives means the world to us.
At around 5AM Monday morning I was up feeding Paisley and I heard Parker dry heaving. This is not unusual for Parker. I immediately ran to his room and he wasn't in his bed. So, I run downstairs to see if he's in the living room and he is laying on the couch. Also, not unusual behavior since his sister has been born. He is a master at getting up early in the morning and raiding the pantry for Doritos. We have since put a lock on the pantry the stinker!
He continued to dry heave so I rushed him up to the bathroom. I remember thinking, "YES! Mom win! He didn't throw up on the couch!"
Parker had started school the week before so I figured he had probably caught the inevitable bug that was going around his preschool, because there has got to be something going around school always, right? I helped support him over the toilet and the poor guy just couldn't get anything out. Then he looked at me and I could see little sweat beads on his nose and forehead. This child NEVER sweats. It's actually a problem we have with him. Then he started coughing. Not like a deep cough, but a little tickle cough. I figured he had something in his throat or a tickle so I took him down to the kitchen to get a drink of water. When I stepped away from him he couldn't stand. His balance was off. So, I picked him up and away we went.
When I got to the kitchen I put him down and he was like a ping pong ball bouncing back and forth between the walls and cupboards. It was reminiscent of our college years - I will say that! Either Parker had just polished off a bottle of whiskey or there was something seriously wrong with him. I will go with there was something seriously wrong...
Immediately I called Casey. He had to go to work super early that morning so I was alone with both kids. Paisley was swinging away dozing off, quiet for the first time in her life, thank God. I tried calling Casey's cell phone countless times, each time leaving messages that were more and more frantic. Then I tried the office number twice. No one answered.
I was supporting Parker while he was standing and leaving Casey a voicemail.
"You need to call me NOW. Something is horribly wrong with Parker...Oh my God..."
At that moment, before I could finish my message Parker went limp at my side. I laid him on the kitchen floor and his eyes were wide open starring off in space. His tongue was clicking and his left fist was clenched super tight. He started turning a shade of gray...
COMMENCE PANIC.
"911 What is your emergency?"
I screamed, "My son! Oh my God my son! He's having an episode. He has Hydrocephalus. I don't think he's breathing. I can't see his chest moving."
"You don't think he's breathing? Do you know CPR? You are going to have to do CPR," she said.
I got down on the floor next too him looking for any sign, just any sign at all that his little body was breathing and I honestly could not find one. His little body kept tightening up and his color kept getting more and more gray. I put my face close to his and I could feel his body heat, but no air.
Just as I was about to start CPR an officer arrived. He came in and we are talking like minutes after the EMT's came. They walked in the door, two of them, looked at Parker and saw what I saw. After a couple more minutes he closed his eyes and took a breath. Whew. His color changed from gray/blue to white as a ghost. They whisked him away so quickly. Our neighbor saw the ambulance lights and ran over. She is an angel and stayed with Paisley so I could go be with Parker.
"Do you want me to stay with the baby?" she said.
I replied, "Baby? Oh my God I have a baby! Yes! Thank you!"
Throwing diapers on the couch and bottles on the counter I sprinted out of the house so fast. I had never really left my daughter, but boy did I decide to start the "cutting of the cord" process dramatically. For the love...
At this point we still could not get a hold of Casey and wouldn't you know it the phone charger that my phone was plugged into all night was broke and my phone was DEAD. Thank God the officer had my dad's phone number because he is also an officer in the area. My dad said he'd send reinforcements.
The drive over, though only a few blocks, was the worst drive ever. I didn't know if my son was alive. Honest to God I had no idea what happened to him. Did he have a seizure? Stroke? Cardiac arrest? It's the absolute worst feeling as a parent. I sprinted into the emergency room and the EMT greeted me. He told me Parker was still unconscious, but he was stable. The physician was pretty confident what we had witnessed was in fact a seizure and they needed to get Parker to the university hospital, stat. They couldn't fly helicopters that morning because of the weather so they were working on getting an ambulance.
I ran to my son and he laid there so peaceful and calm. Unlike the scene around him that's for sure. He was white as a ghost, still, but in comparison to his earlier shade I was glad to see it. I didn't see the whites of his eyes for over an hour and a half.
Sheer panic set in again because I realized I still hadn't been able to get a hold of Casey. What if they transported him and Casey had no idea what was going on? It was incredibly stressful. So, I called one of his coworkers. Thank goodness she saw the missed call and that prompted Casey to check his phone that was locked up. To say he was devastated is an understatement. I don't even know how long it took him to get to the hospital, but let's just say it's a good thing cops weren't patrolling his route that morning.
The ambulance finally arrived and I was able to ride with sweet Parker to the university hospital. He came to in the ambulance and the look on his face was priceless. He looked over at me like what the ...? Where am I?
That strong, brave boy did not cry ONE time in that ambulance. Not one! His oxygen was a little low when we took off, but after about an hour it got better. Parker appeared to be stable. Thank you Lord! Once we arrived at the hospital the staff immediately started the shunt checks.
X-Rays.
MRI.
Neuro Exam.
He passed all of them. His shunt was fine. That meant no brain surgery. So what the heck?
Parker has quite the extensive neurological medical history going on. You move past one hurdle and you kind of put it in the back of your brain, never revisiting the horrible memory. I suppose this was a crucial mistake because we later found out that his extensive neurological issues were causing the seizures. I didn't even think this was a possibility.
Parker has neonatal seizures at birth. They were stemming from damage on the front lobe of the left side of his brain. The area of the brain that regulates breathing. So at birth, his oxygen and heart rate dropped and that is exactly what happened this time. Turns out, he more than likely wasn't breathing the way he should have been. The Neurologist thought it was because the blood goes to support vital organs during a seizure and his Neurosurgeon is contributing it to the source of the seizure and comparison to his neonatal seizures. Parker has doctors who disagree? NO! <insert sarcasm>
He said to us, "I have a lab and I study the effects of these types of seizures. They can be fatal so you really have to stay on top of the medication and you may have to perform CPR to jump start him."
Talk about a punch to the gut. At the end of the day there is NO way to know for sure what type of seizure it was, but we have to prepare for the worst. Hell, he may never even have another one. Unfortunately both of the doctors did agree that this was more than likely not an isolated incident. This was a new reality for him, for us, for our family.
It just feels so unfair that we are always preparing for the worst. For three and a half years it's always been something. Our hearts and minds hurt right now. We've been here before, different circumstances of course, but still with our son and still with his darn brain. It feels like everything we've done the past couple years weren't good enough. We keep up with all of his appointments, therapies, etc. It felt like none of that mattered because we could not protect him or prevent this.
Parker had follow-up appointments/tests the Friday following his seizure. He had to endure the Neurosurgeon's office and an EEG. EEG's are not fun, for an adult, let alone a busy and CRANKY 3 year old. Did I mention his medication has a side effect of "moodiness". Well, it's legit. He is moody. The poor child cried as I had to pull the glue off of his head last night. I seriously gave him three baths, refilling the tub with clean, warm water, because he enjoys the water so much. Then you know what has to happen again? I have to go at his scalp and forehead again to try to get the glue off. Even though it's silly, you know the removing of glue, it's still hard to watch him go through pain again this week. IV's, blood draws, MRI's, X-Rays...it's just too much.
Parker should be starting school with none of these worries. Casey and I should be sleeping through the night (well as much as one can with a new baby) without worrying about our son not waking up in the morning. Instead we are praying, praying so hard, that this doesn't happen again and if it does, it doesn't take our sweet boy away from us permanently like it's apparently capable of doing.
This bump in the road is actually more like a hill in the road. I know we've been here before. We've had to learn about a new diagnosis and it's adjustments to life. That's exactly what this is. I will get there and wrap my brain around it. Right now I'm worried sick, angry and grieving over yet another diagnosis for our sweet boy. I sit and watch him in the video monitor breathing and moving. I count my blessings because as always the outcome could have been so much worse.
We will adjust and plan. We will update our CPR certifications. We will always remember his seizure medication. We will time his seizures. We will keep his appointments. We will accommodate.
We will do all of this because that's what we do in this house. Life has never been any different for us. NOTHING in this world is more important than that little boy. He has been and will always be the light of our life. He continues to show us undeniable strength at such a tiny, tender age. Parker has endured more hardships in his short life than five adults combined. This serves as a reminder to not cry over spilt milk or crushed up Doritos on the floor after I just vacuumed it. <insert eye roll>
He is a special boy with extraordinary circumstances, who happens to be obsessed with Doritos. Needless to say Parker is going to get as many Doritos as his little body can handle ALL WEEKEND!
In the mean time, I will be counting the additional gray hairs that have magically appeared on my head this week, all while enjoying a nice glass of Chardonnay.
Those of you who know me personally know I am WAY more fun with a glass of wine in my system.
Anyway, last Sunday I was prepping for the busy week we were to have ahead of us. Parker had school and therapy, we had several appointments (one being my hair go figure), and I just like to be organized. I am still on maternity leave so I am really trying to get us on a schedule to work when I go back to work. Parker had his nighttime snack of crackers and milk before bed, as he always does. I tucked him and he reached up to give me a goodnight kiss, something new he has been doing with Casey and I. Let me tell you that little bit of affection he gives means the world to us.
At around 5AM Monday morning I was up feeding Paisley and I heard Parker dry heaving. This is not unusual for Parker. I immediately ran to his room and he wasn't in his bed. So, I run downstairs to see if he's in the living room and he is laying on the couch. Also, not unusual behavior since his sister has been born. He is a master at getting up early in the morning and raiding the pantry for Doritos. We have since put a lock on the pantry the stinker!
He continued to dry heave so I rushed him up to the bathroom. I remember thinking, "YES! Mom win! He didn't throw up on the couch!"
Parker had started school the week before so I figured he had probably caught the inevitable bug that was going around his preschool, because there has got to be something going around school always, right? I helped support him over the toilet and the poor guy just couldn't get anything out. Then he looked at me and I could see little sweat beads on his nose and forehead. This child NEVER sweats. It's actually a problem we have with him. Then he started coughing. Not like a deep cough, but a little tickle cough. I figured he had something in his throat or a tickle so I took him down to the kitchen to get a drink of water. When I stepped away from him he couldn't stand. His balance was off. So, I picked him up and away we went.
When I got to the kitchen I put him down and he was like a ping pong ball bouncing back and forth between the walls and cupboards. It was reminiscent of our college years - I will say that! Either Parker had just polished off a bottle of whiskey or there was something seriously wrong with him. I will go with there was something seriously wrong...
Immediately I called Casey. He had to go to work super early that morning so I was alone with both kids. Paisley was swinging away dozing off, quiet for the first time in her life, thank God. I tried calling Casey's cell phone countless times, each time leaving messages that were more and more frantic. Then I tried the office number twice. No one answered.
I was supporting Parker while he was standing and leaving Casey a voicemail.
"You need to call me NOW. Something is horribly wrong with Parker...Oh my God..."
At that moment, before I could finish my message Parker went limp at my side. I laid him on the kitchen floor and his eyes were wide open starring off in space. His tongue was clicking and his left fist was clenched super tight. He started turning a shade of gray...
COMMENCE PANIC.
"911 What is your emergency?"
I screamed, "My son! Oh my God my son! He's having an episode. He has Hydrocephalus. I don't think he's breathing. I can't see his chest moving."
"You don't think he's breathing? Do you know CPR? You are going to have to do CPR," she said.
I got down on the floor next too him looking for any sign, just any sign at all that his little body was breathing and I honestly could not find one. His little body kept tightening up and his color kept getting more and more gray. I put my face close to his and I could feel his body heat, but no air.
Just as I was about to start CPR an officer arrived. He came in and we are talking like minutes after the EMT's came. They walked in the door, two of them, looked at Parker and saw what I saw. After a couple more minutes he closed his eyes and took a breath. Whew. His color changed from gray/blue to white as a ghost. They whisked him away so quickly. Our neighbor saw the ambulance lights and ran over. She is an angel and stayed with Paisley so I could go be with Parker.
"Do you want me to stay with the baby?" she said.
I replied, "Baby? Oh my God I have a baby! Yes! Thank you!"
Throwing diapers on the couch and bottles on the counter I sprinted out of the house so fast. I had never really left my daughter, but boy did I decide to start the "cutting of the cord" process dramatically. For the love...
At this point we still could not get a hold of Casey and wouldn't you know it the phone charger that my phone was plugged into all night was broke and my phone was DEAD. Thank God the officer had my dad's phone number because he is also an officer in the area. My dad said he'd send reinforcements.
The drive over, though only a few blocks, was the worst drive ever. I didn't know if my son was alive. Honest to God I had no idea what happened to him. Did he have a seizure? Stroke? Cardiac arrest? It's the absolute worst feeling as a parent. I sprinted into the emergency room and the EMT greeted me. He told me Parker was still unconscious, but he was stable. The physician was pretty confident what we had witnessed was in fact a seizure and they needed to get Parker to the university hospital, stat. They couldn't fly helicopters that morning because of the weather so they were working on getting an ambulance.
I ran to my son and he laid there so peaceful and calm. Unlike the scene around him that's for sure. He was white as a ghost, still, but in comparison to his earlier shade I was glad to see it. I didn't see the whites of his eyes for over an hour and a half.
Sheer panic set in again because I realized I still hadn't been able to get a hold of Casey. What if they transported him and Casey had no idea what was going on? It was incredibly stressful. So, I called one of his coworkers. Thank goodness she saw the missed call and that prompted Casey to check his phone that was locked up. To say he was devastated is an understatement. I don't even know how long it took him to get to the hospital, but let's just say it's a good thing cops weren't patrolling his route that morning.
The ambulance finally arrived and I was able to ride with sweet Parker to the university hospital. He came to in the ambulance and the look on his face was priceless. He looked over at me like what the ...? Where am I?
That strong, brave boy did not cry ONE time in that ambulance. Not one! His oxygen was a little low when we took off, but after about an hour it got better. Parker appeared to be stable. Thank you Lord! Once we arrived at the hospital the staff immediately started the shunt checks.
X-Rays.
MRI.
Neuro Exam.
He passed all of them. His shunt was fine. That meant no brain surgery. So what the heck?
Parker has quite the extensive neurological medical history going on. You move past one hurdle and you kind of put it in the back of your brain, never revisiting the horrible memory. I suppose this was a crucial mistake because we later found out that his extensive neurological issues were causing the seizures. I didn't even think this was a possibility.
Parker has neonatal seizures at birth. They were stemming from damage on the front lobe of the left side of his brain. The area of the brain that regulates breathing. So at birth, his oxygen and heart rate dropped and that is exactly what happened this time. Turns out, he more than likely wasn't breathing the way he should have been. The Neurologist thought it was because the blood goes to support vital organs during a seizure and his Neurosurgeon is contributing it to the source of the seizure and comparison to his neonatal seizures. Parker has doctors who disagree? NO! <insert sarcasm>
He said to us, "I have a lab and I study the effects of these types of seizures. They can be fatal so you really have to stay on top of the medication and you may have to perform CPR to jump start him."
Talk about a punch to the gut. At the end of the day there is NO way to know for sure what type of seizure it was, but we have to prepare for the worst. Hell, he may never even have another one. Unfortunately both of the doctors did agree that this was more than likely not an isolated incident. This was a new reality for him, for us, for our family.
It just feels so unfair that we are always preparing for the worst. For three and a half years it's always been something. Our hearts and minds hurt right now. We've been here before, different circumstances of course, but still with our son and still with his darn brain. It feels like everything we've done the past couple years weren't good enough. We keep up with all of his appointments, therapies, etc. It felt like none of that mattered because we could not protect him or prevent this.
Parker had follow-up appointments/tests the Friday following his seizure. He had to endure the Neurosurgeon's office and an EEG. EEG's are not fun, for an adult, let alone a busy and CRANKY 3 year old. Did I mention his medication has a side effect of "moodiness". Well, it's legit. He is moody. The poor child cried as I had to pull the glue off of his head last night. I seriously gave him three baths, refilling the tub with clean, warm water, because he enjoys the water so much. Then you know what has to happen again? I have to go at his scalp and forehead again to try to get the glue off. Even though it's silly, you know the removing of glue, it's still hard to watch him go through pain again this week. IV's, blood draws, MRI's, X-Rays...it's just too much.
Parker should be starting school with none of these worries. Casey and I should be sleeping through the night (well as much as one can with a new baby) without worrying about our son not waking up in the morning. Instead we are praying, praying so hard, that this doesn't happen again and if it does, it doesn't take our sweet boy away from us permanently like it's apparently capable of doing.
This bump in the road is actually more like a hill in the road. I know we've been here before. We've had to learn about a new diagnosis and it's adjustments to life. That's exactly what this is. I will get there and wrap my brain around it. Right now I'm worried sick, angry and grieving over yet another diagnosis for our sweet boy. I sit and watch him in the video monitor breathing and moving. I count my blessings because as always the outcome could have been so much worse.
We will adjust and plan. We will update our CPR certifications. We will always remember his seizure medication. We will time his seizures. We will keep his appointments. We will accommodate.
We will do all of this because that's what we do in this house. Life has never been any different for us. NOTHING in this world is more important than that little boy. He has been and will always be the light of our life. He continues to show us undeniable strength at such a tiny, tender age. Parker has endured more hardships in his short life than five adults combined. This serves as a reminder to not cry over spilt milk or crushed up Doritos on the floor after I just vacuumed it. <insert eye roll>
He is a special boy with extraordinary circumstances, who happens to be obsessed with Doritos. Needless to say Parker is going to get as many Doritos as his little body can handle ALL WEEKEND!
In the mean time, I will be counting the additional gray hairs that have magically appeared on my head this week, all while enjoying a nice glass of Chardonnay.
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