Yea....it's kinda like that

Welcome to Holland

by

Emily Perl Kingsley 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you just learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland. 

Home

Well if the past two days weren’t a test of patience and perseverance, I don’t know what would be! Here are the basics, 30 hours at the hospital for a 24 hour test where T was required to have constant supervision and minimal movement. He’s one and a half…you can just imagine how much fun that was! But this isn’t a post about the hospital, or the test, or the incredible family support throughout the whole thing (although all those things are certainly noteworthy) this is a post about being home.

When we left the hospital T and I were both exhausted. On the way home, he kept dozing off and just looked completely out of it. The second we walked through that door though..complete 180. He got the biggest, goofiest grin on his face and practically jumped out of my arms to get to his toys! He went into every room and couldn’t stop rolling around on the floor and scooting from place to place. The look on his face was pure joy and his energy was intoxicating. We played and read a few books then he fell asleep with me on the couch for a good four hours and when we woke up it’s like we hadn’t even been gone. We instinctively fell right back into our dinner, after dinner, and bed time routines.

The funny thing about T is he is completely contagious; when he’s grumpy or uncomfortable, I find myself very irritable but when he’s happy, I’m so happy! He has such a sweet spirit and there was nothing better than the smile on his face when he got to go to bed in his bed tonight. Sometimes we forget about those little things and I find these reminders to be a huge blessing.

Backspace Sunday

It's one of those writing moments; I'm sitting at my laptop trying to think of something intelligent and deep to share with the world and all I've been able to come up with so far are a couple cliche lines about how sometimes only time can heal and how we are all flawed. Real deep, I know. I type out a couple sentences but none of it is really what I want to say so I hold down that backspace button until I'm left with an empty canvas again.

I guess all I really want to say is, I'm happy. My sweet boy is playing with his reflection in the mirror, my house is clean, and my new Pandora play list is totally bad ass. In the midst of all the chaos Titus and I have created this little sanctuary for ourselves where there is peace and comfort and hope. Titus hasn't stopped smiling all week and its completely addicting and contagious! Hes been sleeping well and has not stopped moving even for a minute. It's as if with every scoot, every coo, every smile, every touch he's saying, 'It's ok mom, we're strong, I'm strong, and we'll be ok.' I am so blessed to be this little boy's mommy. I've said it before but until recently I never realized what a precious gift Heavenly Father was trusting me with. He's my sweet boy and I'm absolutely thrilled to see all that he will accomplish and who he will become. 

Sweet Smiles

Had such a fun weekend with my sweet boy! We ran errands with Papa yesterday, brave little man had his blood drawn again, and we ended the night at aunt Cole's graduation party. Then we went to grandma and grandpa Woods' house for breakfast this morning with aunt Cole, uncle Joe-Joe, and uncle Bug and after that we went to the 8th street market to soak up some sunshine. This poor boy has been so sick over the past couple months and finally started feeling better earlier this week; it's so nice to see his sweet smile again and to hear him laugh and see him play! Hopefully we're on the up now.
Happy blogging!

Spring Time

I feel like most my posts start out with the same line; it's been another busy month. And boy it certainly has. Titus is doing great; I see improvement each and every day and his newest little venture is eating solid foods. He likes bananas and cheese and absolutely loves graham crackers! He's also very interested in feeding himself with his spoon, needless to say every night has turned into bath night. He is seeing two occupation therapists, one to help with development; eating, learning, problem solving, the other to help  with physical things; 

sitting, crawling, walking. They usually alternate every other week, so he gets to see one of them every Friday afternoon. They come to our house which is so nice and usually spend about 45 minutes with him. He's always exhausted after but he also tries to keep going and try some of the exercises without any help, it's fun to see. He's become so much more aware over the past couple of months, he laughs more and engages with people. He smiles whenever he sees a familiar face and looks a little puzzled when he meets someone new, after a couple minutes of deep concentration he usually will lunge for them and smile or turn his back to them and hang on to me ever tighter. It's fun seeing his little personality come through more and more. He definitely has his mommy's attitude!

Other than helping the little man develop and grow, I have also started getting out of the house a lot more. On a typical night I used to come home and just play with Titus until he went to bed, then I would go to bed, we were quite the little hermits and I liked that, but lately I have been trying to be more active. Titus and I have started going on walks every night to the park, around a couple times, then back home.  Or some nights we walk over to papa's house for dinner then uncle bug rides back home with us on his long board. We were able to spend the afternoon with grandma and grandpa Woods last weekend and we have just been spending more time hanging out with friends and family in general. It's nice getting out with the little man, even if it takes up a lot more of my energy.

Well, not much else is new. Hopefully everyone is enjoying the spring weather! Until next time, happy blogging. 

Getting There

Well, we are half way to a full recovery at this point and I think things are finally starting to look up for the little man. He has had a pretty miserable week, he pretty much cries and chokes the entire time he is awake and coughs throughout the night, waking himself up multiple times each night. He's had a really rough time figuring out how to swallow again and has had the worst runny nose. But I have seen a lot of the progress in the past 24 hours. He slept great last night, took a long nap today, and hasn't seemed to be struggling as much with eating. He was all smiles and laughs when I picked him up from day care today and I was happy to see my little boy happy again. Hopefully it just gets better over the next couple weeks and we can move onto the next steps...literal ones! Hope all is well with everyone and you all enjoyed a lovely Valentine's Day. Happy Blogging.

Home At Last

Titus was released from the hospital late Tuesday night and he is doing better with each passing day. I found it slightly funny that last year on January 29th he was released from the NICU and this year on January 29th he was released from the PICU. We had a long chat when we got home, I told him no more ICU visits, he's met his quota and I'm tired of uncomfortable hospital 'beds' and bad food. Hopefully he'll keep that in mind next year! But in all seriousness, I am so happy to be home and feel so blessed that we were finally able to figure out what was holding the little man back and that it was something we could fix somewhat easily. Wednesday was a bit of a rough day but by Thursday night I could tell Titus was feeling much better. He is still a little overzealous and tries to eat too fast which causes him to choke and spit up a little more than normal and I can tell by his cough and cry that his throat is pretty sore but for the most part he is back to my happy little boy. He's playing and laughing again and even sleeping almost all the way through the night again!

I really couldn't have survived the week without my wonderful family. Eric was sweet enough to stay with us those first few nights home which was incredibly helpful and watched Titus for me today so I could go in to work and catch up a bit. Adele has been constantly texting me, asking how Titus is and encouraging me by telling me exactly what I need to hear in those moments when I'm mentally and physically exhausted. And between mom, dad, grandma, Cole, and Joey I was hardly alone at the hospital and never hungry; they each came with gifts of grilled cheese sandwiches, fries, or much needed caffeine! Nichole even came and cleaned my very embarrassing apartment for me this week so I could get a couple hours of sleep.

Thank you for the constant love and prayers and kind words. All the comments, texts, and phone calls meant so much to me and really helped keep my spirits up during this very tiring week. Now we all get to sit back and watch as Titus grows and blossoms! I can't wait to see the little boy he will become over the next few years. I am so blessed that Heavenly Father chose me to be this very special boy's mommy, I really couldn't ask for more.