Sometimes Even I'm at a Loss for Words

It would seem that life was continuing at home. After three weeks we headed back to Iowa City to get Parker's stitches out. Complete dejavu. This was at the time over a month ago that we took Parker to his surgery follow-up appointment to then only be immediately admitted the following day for three weeks. To say I was nervous about this appointment is an understatement. 

The day before our appointment Parker projectile vomited, everywhere. This also added to my level of anxiety regarding him getting sick again. I told the doctor, "So, Parker projectile vomited everywhere. I fear this is the start of something bad. This is exactly what happened last time." 

She looks at me and nods. Says nothing. Absolutely nothing. 

You know those awkward times when you are waiting for a response, but you just get a stare? That was this situation. Then, I ask, "Sooo I guess we have to just sit here and wait? You can't do anything?" 

"Yes," she replied. "I understand why you are scared and nervous, but he doesn't have a fever," she adds. 

So, we took Parker home and continued to try to find a new definition of what our lives would be. Not going to lie, I was looking for the vomiting and fever to commence at any moment. It never did. No matter how hard it is, you have to continue living and just find a way to be normal. At this moment I still have no clue what normal is for us. I have become quite the helicopter parent, hovering over everything Parker does. I examine his diapers, monitor his food intake, take his temp several times a day and check his entire body for strange rashes. I can safely say that I drive both Casey and Parker absolutely crazy with my hovering antics. Sometimes they need to put me in time out. 

While we've been home we have known about a couple of our closest friends who were planning on giving Parker two benefits. This entry is a day after our first benefit. Some of our dearest friends and family pulled off a very successful event in honor of our sweet angel baby. 

When you find out that someone is giving you not one, but two benefits, you are just at a loss for words. That is hard to admit, because frankly, I am RARELY at a loss for words. The love and support people have for our family just overwhelms me - in a very good way of course. 

I mean there are t-shirts out there worn by hundreds of people for my son! How freaking awesome is that!?! Talk about Hydrocephalus awareness! You can bet a ton of people at Wal-Mart check-out lines will be Googling Hydrocephalus, now. 

As Casey and I were preparing for the benefit a lot went on in our little family that people are unaware of. Most of the attendees were unaware that Parker still wakes up every hour at night and I had slammed three AdvoCare Spark drinks, having only had less than 3 hours of sleep. We try everything to keep him comfortable because his incisions are still healing and he suffers terrible headaches in warm weather. The day of  the benefit, Parker spit up every single bottle, which is very much not normal for him. His temp was slightly elevated and there was one point in the afternoon where I decided I wasn't going to attend the benefit because I was so worried about him. 

When he spit up yet another bottle I sat on my couch and sobbed to my mom,who was all set to babysit him for a couple hours so Casey and I could attend the benefit together. I was literally crying my eyes out because I continue to fight blinding anxiety over my son's illness and when he will get sick again. I am in constant fear of losing my baby. My mom just sat there and listened to me. She listened to all of my fears and anxieties. When I was finally done sobbing she decided to speak. 

"Cait you can't always worry about him. Babies spit up. Babies cry. Babies get fevers-especially teething babies," she said. 

I reply, "Yeah mom, but those babies do not have a stupid brain disease. Those parents don't live every single day on edge." 

"Those moms don't huge their babies not knowing if that's the last hug they will get in a while. I NEVER know when he will be taken away from me again," I add. 

Her eyes fill with tears too. It pains her to see her daughter fight so hard to have a normal family. She continues on that my basket-caseness (exact words God love her) rubs off on Parker. He can sense my anxiety and when I'm a mess, he's a mess. Basically she told me to buck up and leave. She raised two children and they were fine. 

Okay. I get it. There isn't anything I can do to stop an infection or malfunction. If it's happening, it's happening. Sometimes you have to let the cards play out. It's just...hard! 

I was an absolute nervous wreck for this benefit. Being the center of attention is definitely not at the top of my list and if we weren't bringing Parker I'd say some of the attention was deferred to me. We took Parker in the morning to send the golfers off. When I opened the door to greet everyone, baby in hand, I couldn't believe it. I saw so many people who haven't even seen him. I have an almost 6 month old baby that people haven't been able to see because he has spent almost half of his little life in a hospital. These people not only include close friends, but family as well. 

My husband was nominated to say a few words, because Lord knows, I could not handle it. I can write and hide behind the computer screen, but to get up in front of people and speak about Parker in such an emotional state, noooo way. He definitely did it and was amazing. Actually he wrote much of the speech himself only asking me for a little input. During his "Thank You" speech  at dinner I started crying, shocker. I just never pictured myself, here. Who would? I know. No one would. But to be here and living this life. It was just a lot of "heavy" going on in that moment. When he was done I excused myself and sat in the bathroom to regain composure. 

"How did we get here? How is this my life? How is this MY benefit?" 

When i excited the bathroom, I realized that everyone was in such amazing spirits during the golf outing and dinner. I had a really hard time not crying through it to be completely honest. I wanted to cry, mostly happy tears, but sad tears too. Sad tears for my sweet baby. This was a reminder of what he has and will continue to endure with his illness. It's such a heartwarming experience to have so many people who care about you and your family, all in one room. I did not know most of the attendees, which only added to the warmth my heart was feeling. They haven't even met Parker, but their heart and prayers go out to him. People offered me words of encouragement. 

"Keep on keepin' on!" 

"You, my dear, are amazing. I do not know how you do it." 

"I pray for your son every single night." 

I mean the list goes on and on. They've never met me, but for some reason, our story has made it's way to them and touched their hearts.  So much that they purchased dinner tickets, bid on silent auction items and introduced themselves to me to show their support. I still cannot believe it. 

By time the night was over I literally went from feeling like the most unlucky mom to the luckiest mom in the room. All of these people. All of these smiles! The energy and optimism they had was exactly what we needed. Even if the monetary donations weren't involved, having people there to show their support was more than enough. We weren't alone in fighting this battle. 

Casey and I cannot even think of a way to thank everyone. I mean, as I've said before, I am at a loss for words. We woke up today a little groggy and speechless. Parker was of course an angel for his Nana, having not spit up AT ALL after I left him. He woke up working on his fitness in his crib, entertaining himself so much that we didn't even know he was up. We had a heart attack at 6:45AM without his wake-up call. 

Someday I will share these stories with Parker. I will let him read my blogs, certainly when he's old enough to understand, and express to him how much he is loved not only by his parents, but by so many others. I will stress how lucky he was to have the opportunity to grow up in such an amazing community. A community that acknowledges the hard times and celebrates the good. A community that saw him through high school graduation and continued to lift him up, when he was down. A community that prayed for him every single night. A community that shared in the tears his mother shed and helped wipe them away. Lastly, a community that showed his parents what love and support could mean. 

We are forever grateful to the planning committee and participants in the benefit. You have given us so much love and support and it is our hope that this is the beginning of something very good for our little family. 

Blessings and love to you all! 

Assessments, Molds, Bubbles and Home

After Poop-a-Palooza 2014 I was able to regain a little more self-control. Parker was on his little back for weeks. If you remember we weren't able to pick him up or move him around without a lot of effort from the nursing staff. Because of this he has a pretty bad flat spot. I think I described it before as a cliff.

At the time of hospitalization we were celebrating Parker's "4 Month Birthday". At this point babies should be holding up their heads. Parker was not holding up his head. He was practically a newborn baby. You can't blame the kid. He has a HUGE head. I swear his head is the size of some 3 year old's head. It's a cute hydro head, but a big one for sure.

So, after a little pushing, the Physician Assistant agreed for the physical therapy consult. "He isn't moving around because he just had surgery," she said.

"He's not moving around because his head is the size of a 10 year old. Let's be real. It has nothing to do with surgery and everything to do with his Hydrocephalus," I reply.

She looks at me blankly. Commence stare down.

Why I had to push for this is beyond me. Hello. He is 4 months old and cannot hold up his head. Having just spent three weeks on his back and coming off of a surgery a little over a month ago, the kid doesn't have a chance. I guess I didn't see what the big deal was. Just call the Physical Therapist and have her see Parker. It's our bill. Hello.

My absolute favorite Physical Therapist in Iowa City stopped by. She assessed Parker Hydro Journey #1 and was sad to see him again. She said, "Well he's not doing some things he should be doing, but let me teach you some tricks."

Yes! Thank you! I am a first time mom and I have a child with "different" needs. I know this. The Physical Therapist and I had a long discussion about Parker's future developmentally. She told me about some programs we can get plugged into back home. I agreed that we should definitely look into it. We had a nice discussion about how parents of kids who need a little more attention sometimes act on giving more attention or pretend like they are "normal" and wing it.

I am not a gambler. I don't "wing it". Especially when it comes to my son. Casey and I definitely went through phases of grief when our son was diagnosed. Like I've said before, he has an incurable illness. We can do our best to treat him and control it, but we can't take it away. Parker will live a lifetime of worry and headache pain. It's an absolutely heart breaking reality as a parent. No control over your child's pain. So, when I'm offered some control and when someone finally says "this is what you can do to help him" you better believe I'm going to do it.

"Some parents just don't think their child needs extra help or attention. They just see how it goes as they get older. It's definitely been my experience that the wait and see approach isn't always the most beneficial when they are this little," she said.

I reply, "I am not doing him any favors by pretending he's like he's on track. The idea that he isn't definitely broke my heart. I am done complaining about it. I've asked doctors for months what I can do to help my son and they've all said, wait and see, and love him."

She nods.

"Thank you for giving me something to do to help. It might not be much, but to help him develop and gain strength is amazing," I said.

Tears sting my eyes. I couldn't help it. As I type this tears form again thinking about our conversation. As a mother I feel so helpless. At times I feel like a failure. I was telling my husband just a week ago how much of a failure I feel like sometimes. God created a woman to be able to bear children and bring them into this world happy and healthy. What an amazing gift! Obviously my "mother mold" broke somewhere and something went wrong... I know a lot of people close to me would disagree with that, but its how I feel. Like I've said before, no matter what anyone says, I will always blame myself. I cannot help the way I feel.

I had ONE job. Gosh!!!!

Reflecting on where my mold broke I also realize other unique gifts God gives to unconventional mothers. Some women can't conceive or carry their own babies. I am sure they feel the same way. God gives those mothers the gift of patience, which undoubtedly, makes them amazing mothers when they finally get those little angels in their arms. So, he definitely makes up for areas in which we feel defeated.

I guess what I'm trying to say is though I feel like my mold broke, I also realize that I was given other attributes at a higher scale that enable me to cope. My husband said God gave me humor, strength and perseverance above everything else. He said that's what gets our son through this.

He's right. Now, where do I sign!

Parker is high risk for a lot not only because of his Hydrocephalus, but because he had a Grade IV  brain bleed at birth. In fact he qualifies for a lot of assistance developmentally because of his brain bleed, not his Hydrocephalus ironically. My biggest fear is Cerebral Palsy, or CP. The reality of it keeps me up at night. As if having Hydrocephalus and the possibility of brain damage isn't enough, let's give the kid CP. I've been told that CP can be diagnosed anytime from months to a couple years old. It's like holding your breath every time he is examined.

After our Physical Therapy assessment we were ready to go home. Parker would be quarantined for a bit at home. At the end of the day, if he were to get Staph, the damage would be done during surgery. We were just trying to keep his immune system "clean" from outside germ exposure. The doctor did not send us home with antibiotics. We were in charge of keeping his incisions clean and dry. Sounds easy enough. Yeah right.

Did I mention the surgeon who put in his ventric or external shunt did not shave his hair in that area? Quite fun ripping that band-aid off to clean his incision. SUPER fun time at our house. Every little clean turned into a mini wax session for poor Parker. I often wanted to shave it myself, but decided against it because I am a chicken and fear the razor would cut him, thus giving him an infection. Paranoid much?

My last question to our Neurosurgeon before we left was, "Now where can I buy that bubble for Parker to live in?"

He laughed.

"Oh. You thought I was kidding? Nice try," I reply.

So we head home with a baby a month older, three brand new incisions, an adorable quilt of the solar system courtesy  of the Dance Marathon Team, and a whole new set of emotions and nerves. We also leave with new wipes, ointments, band-aids, formula and diapers. Do not forget the diapers! You open up one pack and they are yours! Boo-yah! Clean house, man! Every time we leave the hospital I feel like I just took a trip to the baby aisle at Wal-Mart. Love it.

Walking out of the hospital is always a relief, but at the same time the most terrifying experience. I feel like a normal family in the confines of the hospital. When we walk out of the secured hallway with the rest of the public I realize that we aren't the normal family. People stare at my son. They look at me with that all too familiar sympathetic smile. They question how something like this can happen to a child so small. Been there done that!

The drive home is usually quick and the first night at home is absolutely horrible. I am always a nervous wreck and camp out in the nursery. Without the heart monitors and 24/7 nursing staff I feel beyond terrified. I remember escaping to Wal-Mart for groceries when we were home that first week. It felt like a vacation.

Casey asked me, "Are you sure you remember how to drive?"

"Very funny. Yes I remember how to drive," I reply. To myself I thought, do I? It has been a month! I made it to my car feeling like I left something at home. Oh yeah, my baby. My little precious angel who I had been with every single day. It was strange to not have him with me.  I had a heavy heart leaving him at home. When I was alone I was thinking how different he was. He was sooo different. He wasn't eating, laughing, or sleeping. I thought that this was the time I "lost" a piece of my son. Every time he goes into surgery I am terrified of what will happen or who he will be when he comes out.

I remember crying to a friend on the phone telling her how different he was. I was absolutely terrified. It was honestly like he wasn't even here with me. It took several days for him to come back to me. I think he was "homesick" for the hospital! As crazy as that sounds he has spent so much time there with all that attention, he was out of sorts! He adjusted eventually, but it was a very scary time.

I am grateful for each day I have with him at home. Every single day is a battle. Every spit-up, higher temperature, sleepless night, headache, etc.. scares the holy heck out of me. I never take a second, minute or day for granted. Truth is, I never know when he will be taken out of my arms again. It is my constant reality and unfortunately the odds are not in my favor.

Hydrocephalus sucks.