Too Young to Remember

This year for our daughter's 3rd birthday we asked ourselves the big question: "Should we do Disney or is it too soon?"  It's so common for people to decide that such trips aren't worth it because children that young won't remember the experience. It was also what my parents had said when I was little, that we would go once we got a little older. Then life happened and with the 7 year age gap between me and my oldest sibling there was never a great time to go. By the time I was old enough, my sister was a teenager with a job, band, tennis, and a hectic schedule that went with it. I would turn 33 this year and still had never been to Disney.

My point is, does it really matter? Why is so much emphasis put on whether or not a child can remember when as adults we struggle to remember what we did last week. I'm so glad we didn't let that be a reason to wait. Things in life change so fast and anymore I try to seize the day and life in general whenever I can. We go overboard sometimes, sure. There's always our memory of being told she might not live to reach her first birthday. So we usually opt for going all out. Last year it was a circus party.

 

This year we just skipped an at-home party and headed to Disney. So what if she doesn't remember?!! She had a wonderful time, and I will never forget how happy she was. When she gets older, she might not be so excited about seeing Tigger or Cinderella or getting her autograph book signed. 

 

 

No regrets here. Yeah, Disney can be pricey. Parties are pricey too! But much like those sappy credit card commercials say---the smile on my girl's face was priceless.

#fedupwithhashtags

Before I get up on my soapbox, I will note here that I've been told before that I have an old soul. That fact is increasingly apparent. While I'm still a 30-something, I sometimes feel like a dinosaur. "Back in the ole days...", I remember when cell phones came in a rather large bag of their own or had an antennae so large you had to unscrew it in order to fit it in a large purse. I could giggle as I'm writing these very words. No, we did not have cell phones as teenagers-not most of us anyways. While I was guilty of hogging our home phone for hours to chat with an admirer or giggling with a friend--I still didn't have a phone attached to my person at all times. I might be outside and busy. We could drive to a store or restaurant and be unavailable until we returned home and checked for any messages. That's a common example of how we got on with life. We weren't always reachable and that was acceptable. I don't enjoy the expectation that we should have a phone on our hip 24/7. Sometimes I enjoy just living life and not checking for missed calls and voicemails. I was also one of the late bloomers when it came to texting. I hate all that clicking. I don't mind a convenient question here or there (or a lovely photo), but I despise having to type an entire conversation. It seems like you have to text and "check-in" to make sure that it is a convenient time to place a phone call. While most people have a phone within 2 feet of them at all times we don't want to use it to talk anymore.

 

The hard thing for a detail-oriented individual like myself is...words of a text or e-mail lack emotion. Without hearing the tone of a person's voice, some things can sound sarcastic or just different from how they were intended. We miss a true connection. Of course FaceTime and Skype are options, but most people I know rarely use them. Maybe we meant to, but we'd have to first schedule it or send a text to make sure it's okay.

I try to keep up. I did the Myspace thing until everyone left and went to Facebook. I was like, "It took me hours to set all that up and now I've gotta do a whole new site, username, and password?!! Am I gonna have to check-in to multiple sites like this now?!!" But alas, I followed the crowd. I do enjoy connecting with friends as far away as Alaska, seeing a photo of a cousin I wouldn't normally see, and laughing at silly e-cards and cartoons. I am a social gal and I like to be in the know. Which is also why I long ago caved in after at least 2 years of refusing to text. I don't enjoy it as much as actually talking, but it's that or nothing most days. I do crave making the connections although I find it increasingly difficult. As I became a Mom, so did a lot of other people I know. We all protect our family time with a wall of unavailability. I am guilty of neglecting return calls, but not out of spite. I seem to lack the discipline of time management and remembering what time is best for others. It feels so less invasive to send a Facebook message or text-that this is the proper etiquette now.

Now it's also become a thing to use hashtags, which by the way was created for use on Twitter. They serve no real purpose on Facebook (in my opinion) other than a way to look trendy and use more internet slang. I noticed this past week about 5 people used #TBT in a status update. By the 5th time I was so annoyingly curious about what it meant that I googled it on my handy dandy smartphone-which of course was in my pocket at all times in the event of such a need. Apparently it can be used to mean ThrowBack Thursday along with some old photo, or less commonly can mean "Truth Be Told". Okay, well that's fun. I admit it. But why are we too lazy to use the whole phrase? Are we so busy that we can't type 3 words? LOL, ROFL, DD, DS...why don't I just type random letters and see if you can read my mind? HTAA! It's so silly there was a skit about what we would sound like if we talked like this in person. ((WARNING: includes an edited profanity at the end))

 

While I probably sound like Andy Rooney (google it) to some of you right about now, I will say that I recognize the importance in joining the crowd to some extent. It's keep up or be left behind and I certainly don't want that. I don't miss the days of looking up things in our red encyclopedia set. I use my smartphone and love it. I Facebook and enjoy it. I text these days. If you want to see pictures or know about a person it is your responsibility to be the one to make the effort. So instead of waiting around I plug in, log-in, and so on. I just wonder if all our smart technology has hurt us in other ways. I've lost touch with some friends altogether because they were worried they might wake the baby if they tried to call. Eventually, we just lost touch. I moved out of state and lack a friend that I can drive and go see. Most of my immediate family is in another time zone. So, communication is more important than ever.

Here's an revolutionary idea: scroll to one of your contacts and dial the number. Hear a person's voice. Re-connect. Hear their laughter or share their tears because you can't get typically get that on their Facebook page. Drive to see a loved one and share a cup of tea. You might make their day and yours. Also, you might refine a really important relationship.

Precious Memories

About 3 weeks ago it was my husband's birthday. Just like a lot of other years, we don't do much to celebrate. Once you pass 21, it seems that the important milestones have already been reached. While we acknowledge adult birthdays, we're lucky to receive a few cards and a little cake. We save our money for other more important things-like the computer that just crashed and needed replacing. So we were going about as usual checking off items on our To-Do list. I sent Brian to pick up our old computer from the Geek Squad. They were going to wipe it clean of viruses and transfer files to our shiny new computer that we are learning how to operate. We didn't have a lot on there, we just wanted "My Documents" and our pictures.

I went about cleaning and tidying laundry. I thought it was taking a while, but then again I did send him to an electronics store by himself. I imagined he was staring at all the big screens and other items we can't afford. He finally returned and I noticed he had bloodshot eyes and his lower lip was trembling. I instantly thought the worst. Had someone died? Had he totaled our only car? It's scary how many horrible things you can think up in a few seconds. He blubbered out, "Honey, we've lost all our pictures of our girl!!!".  I knew then why he was crying. Back when we left the NICU with Amelia, we were given a pretty grim diagnosis. We were given all these statistics about children with Alagille Syndrome. So-Yay a diagnosis, but-wait...you mean she might not live to reach the age of 2?!!! We make a big deal about savoring every precious moment. What Brian was really thinking about is that if we ever lose our girl (which we pray about often)-we wouldn't be able to look back upon her sweet little face.

Ohh-kay. I pulled up www.shutterfly.com, logged in, and showed off all the pictures we'd ever taken of our Amelia. (Big sigh of relief!) One trip of a lifetime to Greece and every picture of our lovely girl were all there online organized neatly into folders. Thank God for a little place where I had managed to save them all.  While I had lacked the discipline to upload all of our pictures, we had the most important ones. Brian had yelled his lungs out and had security called on him for nothing. I felt so bad that his birthday felt ruined and while the pictures were indeed safe, he was still shaken for the rest of the day.

After we had calmed down, I began to wonder which pictures we had lost. Our first 12 years of marriage??? I dreaded how many pictures of my nieces were gone, but beyond that had no idea what I was missing. I began the search and found a few SD chips that had all our daughter's precious milestones-the same ones I had uploaded. It was good to know I was so thorough. I do tend to obsess over pictures. It's my Mom's fault. She is like a Photo Encyclopedia. She takes pictures of every birthday cake, reunion, church event, newborn baby, and/or special outing. I've even known her to take pictures of different headstones at local cemeteries-for family history she says. We joke about it and even get a little frustrated sometimes at her demands for photo ops and printed copies. Of course we all know why it's important, even if she does enjoy her hobby a bit too much for our taste. Her sentiment is because all of her possessions including her baby pictures burned to the ground in a house fire when she was a child. The smell of smoke, even from a candle, scares her to this day. I've never experienced it firsthand but I have had nightmares of snatching up all my picture albums before running out of a housefire.

Anyways, turns out I was even more OCD than I remembered. We've now found an old external hard drive we both forgot about. Brian says I used to nag him about backups all the time. So tonight I was able to upload over 5,000 images to my new computer. Here in our home we consider it a miracle. What would I have lost? Vivid memories of:



My first nephew's baby shower,






Or this favorite Christmas photo where my Dad tried our tea,



From my first cake class...

to my best culinary creation (800 handmade violets),

 



the simple beauties found on an old family farm,



and several good reminders of what we looked like before we entered Parenthood.

Of course we also would have lost vivid memories of our nieces, nephew, many Christmases, Halloween costumes, weddings, dear friends and much more. Please find a promising way to store your precious memories, AKA family photos before it's too late.

An Introduction

This is my Amelia, and this was the day my life changed forever. After nearly 12 years of marriage we were finally able to become Mom & Dad. Nothing will ever mean more to me than that day. However, it started out so much scarier than most. She was immediately rushed away to the NICU. After a few days we followed behind her ambulance to a nearby Children's Hospital. We stayed there until she was 1 month old, when she was diagnosed with Alagille Syndrome. It is a complex and rare genetic disorder. (You can read about it here: http://www.chop.edu/service/alagille-syndrome-clinical-care-program/about-alagille-syndrome/ )

We read so many books and took the necessary classes during pregnancy. Most of which did not prepare us for the road ahead. Life was not going to include all of the typical experiences of motherhood. Instead I became the Mom of a special needs child. As I watched my daughter struggle I didn't know whether to be angry at God, cry hysterically, or just crash. It took me a long while to rebuild my faith and get a grip on this type of parenting.

 I find it difficult to share my story. There are so many things I keep to myself for one reason or another. Mainly, I don't want my daughter to ever feel she burdened me. It's not like that. I always wanted to be a stay-at-home Mom, which worked out to be so important for this level of care. Also, this may be difficult to understand to Moms of healthy children, but....I no longer wish that she had been born healthy. It is a funny thing that expecting parents say that they "don't care if it's a girl or boy so long as it's healthy". Well when your child isn't healthy then what??? I have learned my daughter wouldn't be the strong feisty character she is had she not endured this battle. She was sent here just as she is to be loved and cared for by my husband and myself. I don't believe it was because we exhibit some special type of superhuman ability to deal with sleep deprivation better than other parents. (I'm referring to that dreadful line about God knowing what parents to give special children to.) She was a gift to us and not the other way around, and I certainly don't deserve any award for just maintaining her health needs. I do believe that God is showing me new reasons to share both the good and bad of it all, and that I can serve him in that way and be of some greater use.

So here's 3 things I never shared on Facebook:
1. The extent of the sleep deprivation.

Amelia had horrendous crying spells her first year. I remember one in particular lasted 4 hours that I held her, walked with her, laid with her, sang to her, rocked her, Baby Bjorned her, etc. and still could not calm her. Now I can say without a doubt that it wasn't cholic and it wasn't kidney pain but it was her itching. Her itching, also known as pruritus, is internal and is similar to feeling like you have mosquito bites all over your body. She takes multiple medications to try to maintain this. For the first 11 months however, most nights I was fortunate if I could get more than 2 hours of sleep-and that is not an exaggeration. I also had nights I sat in the floor by the IV pole that held her feeding pump. It didn't always work right and the tiniest air bubble could beep a loud alarm every minute and a half and need resetting. When Amelia managed to sleep better (which meant only getting up 5x instead of 20) I battled insomnia for over a year. It's better now, but still similar to caring for any young infant in the night. It's still common to have to get out of bed and coax her back to sleep multiple times in the night. I've lost the ability to sympathize with someone who has a few bad nights or even weeks of sleepless nights. I know it shouldn't be a contest. But the zombie in me says, Oh Yeah???

2. I don't know if I'll ever get date night again.

This one is difficult for most people to understand. My daughter has multiple medications and is fed by feeding tube. It would take weeks to teach someone how to do it, and without medical training there are still other risk factors. One of those is the possibility that Amelia could yank her feeding tube out. It is called a Mic-Key button and is a small device in her abdomen. She has and can pull it out. When she does, she needs to go to the emergency room and have it replaced in a small window of time or it can close up and require surgery.

Anyways, I don't know what it is to "get away". I pretend a nice bath is a personal vacation when the hubby is able to watch Amelia for me. I welcome most any adult conversation because I am never without my toddler, unless it is that occasional uninterrupted bath time. I've had many people tell us how important "me time" or date nights are-but that's easier said than done.

3. All.the.appointments.

Most special needs children see multiple specialists. Our Amelia has the following doctors:  a gastroenterologist, a cardiologist, an endocrinologist, a urologist, an ENT, a surgeon (for anything related to feeding tube), and a genetics doctor in addition to her nutritionist, a pediatrician and a pediatric dentist. She had also been to a nephrologist and continues to maintain appointments with Audiology. She has had over 20 different ultrasounds, radiology scans/procedures, and x-rays. She has also received feeding therapy, physical therapy, and developmental therapy which are all maintained with an Early Intervention case manager. All of the above require appointments obviously. Many of those had required an hour drive one-way. It was common to make the drive twice in one week. Therapy appointments were in-home weekly or twice weekly, but have since become more manageable. I don't talk about all of the appointments, because it sounds so dramatic. People expect some definite result and most of the time there isn't a lot of information to relay. It's just a slow ongoing process. Thus we tend to not bring it up. Also, we try not to draw attention to her medical needs. We hope that you'll notice her smile instead of her jaundice. We hope you'll let her participate because she really is able. We hope you'll want to love her just the way she is because we sure do.