Trepidation

The U-haul is sitting in the driveway waiting to be loaded.  I wouldn't let Sam put anything inside it last night out of fear of losing my visual guidance of the items I packed.  I just finished the last of Sonzee's boxes, but those are the last things to get loaded since Sam will have to take the majority of them out each night due to temperature parameters.  I remember the first time we traveled as a family of 3 with Sonzee's oldest sister.  We had so many bags and so many items all for this one little baby.  Now I look at Sonzee's section of the garage pile-which extends into the main area of our house so those items stay cool and I wonder how one person can require so much.

This year marks the 4th summer we will be going to NY with Sonzee.  The only summer of her life we missed was the first year she was born because we were so afraid she would start having infantile spasms and we would be in the middle of nowhere.  Every year since her doctors wish us well and send us on our way, reminding us before we go how proud they are for us not stopping our lives, how great it is that we still go, and how we can reach them at any time if we need to.  Every year we pack up and go more excited than apprehensive, however, this year I am filled with more anxiety than excitement.

This will be the first time we will have traveled out of state with Sonzee since she had her central line placed in December.  This will be the first time she will be on TPN/Lipids and we will not be within a familiar hospital's nurse's reach if she has an emergency or needs emergency labs.  The closest hospital is a regional center that we have visited once and she was out of their comfort zone and all we needed was basic abdomen x-ray.  I am so beyond fearful of a fever.  I am scared out of my mind for a central line infection.  Will she require air flight if that occurs since the children's hospital (that her amazing GI told us to use because she knows the doctors and will coordinate her care once we tell her we are on the way) is over 2 hours away?!  I want to plan and prepare, I do not even know how, and I want it to be a complete waste of time and worry.

Snowfall

We were able to get away this weekend and have a much needed and anticipated break.  I use the term "break" lightly because really no matter where we go, or how much of a relaxing environment we find ourselves in, or how beautiful the scenery, we really cannot just "take a break" from having a child who is complete 24/7 care.  The distraction of being in a different location sort of helps to redirect our attention, but there is no forgetting or really even pausing of the life we are living.  It does, however, give our family a different experience and allows for other opportunities for us all to bond and for our kids to maybe feel that their lives are not just about their sister.

I really did my best to be entirely in the moment the whole time we were away.  There, of course, was the relocation of our home mini hospital, alarm reminders for medications, time spent making and starting/stopping her j-feeds, TPN preparation and infusion, machines beeping, daily seizures, middle of the night seizures, and naturally, middle of the night alarms ringing.  These parts of our life don't just get to be put on hold because we want to venture to the snow, but they are a small price to pay for being able to do just that with Sonzee.  The memories we made will stay with all of us forever, and we all had the "best time ever".

I have not lived in snowy conditions for 29.5 years and maybe I am crazy, but being out in the snow brought such a level of happiness to my soul.  Maybe it is because I was only a child when we moved that the thought of being in the snow brings me utter excitement?  I don't have negative memories of shoveling snow or scraping away ice on a car windshield.  I don't remember if there were struggles getting in and out of the car in snow gear.  I remember weekend ski trips and having fun with shovels in the front yard of our house.  Maybe it is because I was just a young child with no cares in the world and winter was my happy place that I have this pull and desire to spend as much time as possible in a winter wonderland?

There is this beauty in the fact that white flakes fall from a darkened sky and erase any evidence of what happened the day before.  The ground after even only a few hours creates a fresh canvas, allowing something brand new to unfold; a new story to be told.  The view is always beautiful and breathtaking.  The perfect picture painting of the contrast of life that is so apparent.  Mountains covered by clouds, but with green pine trees visible holding the weight of pounds of white snow.  House roofs covered in even sheets of white, dirt ground hidden, wildlife easily visible if they are out.  It really is just a miraculous thing to see.  While the outside imagery doesn't do much if anything to change what goes on behind the windows you may be viewing from, it gives you the opportunity to take a moment to reflect on the potential that could be, even if its brief, and even if its quickly erased, because you never know if something even more beautiful will present itself tomorrow.

Going away

Since I have become a mom I have never gone away from the kids for long periods of time.  We have gone a night here or there and I think our longest get away was maybe 36 hours.  Since Sonzee has been born leaving all the kids under the care of one person for overnights has happened one time for Sam's 35th birthday.  I get so nervous leaving her with all of her needs that the only comfortable way I can even entertain leaving Sonzee and going away is if she is able to get into the Ryan House.  I have to be on my game as far as preparations for this to work out, so when we knew our long time babysitter was getting married this upcoming weekend, I called Ryan House 6 months ago to book her stay.  Despite calling when booking opened, the soonest I could get her in was Sunday afternoon...we are scheduled to leave Saturday night.

These last few weeks I have been a nervous wreck with everything going on with Sonzee and the thought of going away.  I was nervous about her night at home Saturday night even though we found an amazing day time nurse who was willing to do the night shift.  I was nervous about her drop off going smoothly on Sunday and what if I forgot to tell my sister something important and it was never mentioned to the nurses at Ryan House?  I was so worried over everyone forgetting to pack all of her medications after they gave them to her and I didn't like that I would have no control.  The last couple of days I have been so anxious about going away, I have spoken with Ryan House literally every day asking if someone had cancelled.  Yesterday morning my prayers were answered when they told me we could bring her in today.

It is one thing to leave typical kids with grandparents and aunts/uncles, although even that isn't exactly worry free.  However, when it comes to leaving a special needs child, it is an entirely different situation.  I know everyone who would have watched her would have done it amazingly, but I feel so much better being the one to drop her off and set up her room.  I will be able to give the last minute reminders, discuss all of her medications, make sure they set up the smaller camera over her bed to ensure they don't miss any seizures, and show them all the various seizure types she is having (although she will undoubtedly start a new one while she is there).  I still have the nagging feeling over the thought of going away and leaving the kids at home, but at least I know they are all in great hands.

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Packing

Over the past two days the townhouse we have been renting has been filled with half filled plastic bins, boxes, and suitcases.  The last loads of laundry are being completed, counters wiped down, and floors swept.  I have been putting off packing until the absolute last minute because I am not exactly ready to leave.  My mind knows that I cannot stay here forever, but there is something about this place that has my heart, I think it is the combination of mountain air and the most amazing friends we have continued to make and strengthen bonds with over the years.  So today we will walk down the steps of TH49 and drive down Town House Road one final time for 2018, and yes there will most likely be some choking back of tears.  This day every year is always bitter sweet as it marks the end of our summer retreat but paves the way for the next 10 months. 

I am always amazed at how quickly 6 weeks passes by.  Sonzee made it another summer with minimal interventions required.  She got to spend time in the pool, outside, bouncing in her bouncy seat, and relaxing.  I will be honest, she did minimal therapeutic activities and minimal work.  We can just pretend that her eyes were patched daily and that she worked on weight bearing after the 2nd week.  She did get 40 nights of sisterly snuggles, naps in the arms of Sam and myself, and a multitude of conversations with so many people who care about her.  She went to a new amusement park, returned to familiar places, witnesses a couple family lip sync contests and dance offs, and got to meet new people.  Her GI issues earned her a visit to the local hospital ER, but luckily she was not given a tour of the actual inpatient rooms.

Overall, in my eyes, I know her summer was a success.  This is small town in New York has turned into our safe zone, the place where reality is muted and life adjusts to a calmer, slower, and serene way.  So today we will pack up our bags and memories from summer 2018 and hope that google photos and my mind will do them justice and carry us through the tougher times that will inevitably come our way. 

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8 days

Our summer in NY comes to a close in just 8 short days.  I am wondering how some days feel so long but time continues to pass me by with record breaking speed.  By the end of this week Sonzee's oldest brother will have turned 7 years old and her youngest brother 8 months.  I would pray for time to stand still except for the fact that for the next 8 days I can confidently say that Sonzee will be uncomfortable and in some sort of pain, and so each day is one day closer to being able to address her needs in a more suitable environment.

I wish I could say that once we return home her issues will be remedied, but I am more realistic, and we have danced this dance a time or two.  In the recesses of my mind there is hope that our next solution will be successful, but it will not come without a hefty price tag of potential yet guaranteed challenges.  While Sam and I are finally on the same page, the pit in my stomach, weight on my chest, fear in my mind, and pain in my heart are all too much to handle. 

This summer as usual has provided the support I have needed to rest and recharge so I am able to tackle what inevitably lays ahead.  It has allowed me on a certain level to ignore life and choose what we want to focus on.  Being away has kept me from emailing doctors daily, kept us out of inpatient stays, and allowed us to provide some semblance of stability for Sonzee's siblings while keeping Sonzee as comfortable as best we could.  We have 8 more days to live in our version of fantasy, to go on our 3rd annual trip to Hershey Park that Sonzee's siblings have spent a year anticipating, and to continue creating family memories.  So while the next 8 days will be filled with bitter sweet moments we will do our best to highlight the sweet ones and overcome the bitter ones.


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No longer a baby...

We got up and went to the airport yesterday like we have done many times with Sonzee in tow.  We even managed to get there early (yes, even we are capable of doing that on occasion- we just try not to make a habit of it).  We got through security in our usual amount of time with the typical pat-down and analysis of all the supplies we bring for her.  TSA at Phoenix Sky Harbor is always amazing to deal with and we never have any problems, things just take time.  The truth is, no matter how prepared we are, how accommodating everyone is, or how smoothly the process goes, traeveling with a medically complex child is still extremely hard.

Yesterday was the first time we flew with Sonzee in her convertible carseat, in the past she has been in the infant carseat, so of course, there will be a new learning curve.  We were the third in line for preboarding (Sam and the kids came with us) and we were the reason the plane was four minutes late departing.  I will let that sink in with you for a bit.  It took us the entire time of the boarding process to get her carseat installed correctly and we ended up having to forward face her because the distance between the seats would not allow for the proper recline with her seat facing rear.  Yes, Sonzee's one famous skill is her head/neck control, but it is nowhere near what a typical two year old's ability is or should be.  No matter the various supports I tried, her poor neck was flopping forward.  This was not ideal.

When we finally got her situated, the plane pulled back from the gate.  During the chaos of boarding, the pilot (who actually helped carry our bags onto the plane) placed Sonzee's medical bag in the overhead bin while we organized to make things easier and I never had a chance to grab her VNS magnets in all the chaos.  Naturally, it made sense that during our exact pull back from the gate she would have a seizure and her magnets would be out of my reach.  Again, thankful for being with amazing care, we pressed the call button and the flight attendant more than happily grabbed her magnets and checked up on us multiple times within the 6 minutes it took for us to get to the runway to ask if we were okay to take off.

Thank G-d for the amazing staff at Southwest who never once said anything negative, did anything to insinuate we had to rush and were overwhelmingly supportive during our entire experience.  Like I mentioned previously, this all helps, but the fact is this traveling gig is not what pleasant dreams are made of.  We have medical bags complete with essentially a portable hospital; a pulse oximeter, portable oxygen concentrator, feeding pump and supplies, medications and supplemental supplies that go along with her VNS, not to mention the various other supplies that come with having a toddler who is essentially still a baby.

I guess I had not really considered that traveling on a plane as she got older would be significantly more challenging.  Even with her being in the 2% for weight and height I didn't even bother changing her in the small little fold out table in the bathroom because she is too long.  I think the reality is setting in that we are no longer traveling with a baby, we are traveling with a child who has special needs.


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