An Exhausting Read

People ask me all the time how I am doing.  My only real answer to this is that "I'm upright".  I can't begin to explain what life is like or how I really feel, I don't think I even know.  I think that I live life in a surreal bubble of just living hour to hour for the most part.  I have two lives that I have to live, one at home with the boys and one at the hospital.  The two lives don't actually cross that much right now because it is increasingly stressful to pair them together.

Take today:
Braeden had a really rough night the night before and couldn't settle therefore I had a rough night of not being able to settle.  I call the hospital a few times a night (when I wake or get up to pump generally) and he was just miserable last night.  It is times like that that I really struggle, wanting to comfort him and knowing that I can't be in two places at once.  I'm no good to T and Ry when I've got no sleep because I've stayed at the hospital all night only to come home in time for Michael to go to work for 6am.  Braeden has a bad night, I have a bad night.  Braeden has a good night, sometimes I have a good night (it's not a true science after all).  I knew that Mr.B would crash today being as he had a rough night so I had a house clean day and spent time with the boys.  Now keep in mind the constant guilt that I feel that I am never in the right place.  Throughout my day I feel guilt that I'm not at the hospital (yet I know that when I call he is settled and asleep) and Torin was bugging me through the day to take them to the hospital.  Now you'd think, awww, he wants to see his brother.  No, that is really not the case, it isn't that he doesn't WANT to see Braeden, it is just that he wants to see the elevators more.  Now if you don't know my kids (or any child with Autism) you might find that 'odd' but T isn't odd at all, just focused like any other kid on what makes him happy and spending time in the elevators at the hospital (or anywhere else he know where they are), makes him happy.  So I finish cleaning up and we all set off as Michael is at work and I have to drag my Mother along because it is not a task that I can do alone (pretty self explanatory to follow). 

Our arrival at the hospital goes like this:
I start to park and instantly have an upset 7 yr old because I've not remembered to park on the right level, we can't (or don't need to) take an elevator on the floor I parked on.  Oops, pull out, tour the parkade to get to the appropriate level (keeping in mind my stress that I've not seen B all day yet).  I've already pre-explained to T that we will have to see Braeden first THEN elevators.  He's not happy with that but will relent because it is his only choice.  We get to the NICU and the Ry gets upset because he wants to see Braeden but hates having to scrub his hands and arms for two minutes.  Getting past that, taking Torin back out to the bathroom and re-washing hands, we get into Braeden's room.  The nurse had Braeden up in his swing and he was fast asleep so I didn't want to disturb him.  Pretty much from the moment that we set eyes on Braeden Torin knew he could now go see the elevator because he'd now 'seen' Braeden.  We sat for a minute so Ry could get to see B and he really wanted to touch his feet (his little piggy toes were sticking out of the blanket).  Rylan really wanted to see Braeden as they've not been into his room since Christmas day due to them being sick, me being sick and just timing. 

I pulled Braeden out of the swing to hold him and Rylan then had a major pout that he couldn't be the one to hold him.  How is it one can begin to explain to a five year old that if he moves his brother the wrong way he'll stop breathing?  I tried (in vain) to explain to Ry that Braeden isn't like other babies he sees and he can't hold him just yet that he is still far too fragile with all of his wires and ventilation.  So picture Rylan sitting beside me refusing to talk and having tears in his eyes while Torin is at the door "when can we go see the elevators??".  The wonderful part is that Braeden chose that moment to wake up and was really peaceful, he just opened his eyes and stared at Rylan.  He didn't focus on me at all, just Rylie.  I explained to Ry that B wanted to meet him, as he was looking at him and Rylan was somewhat reluctant but happy about that.  My Mom snapped some pictures (while Ry was in tears because we didn't take the RIGHT pictures, try again) and Torin got increasingly agitated.  I asked my Mom to take Torin out to see the elevators but she told him she couldn't ride in them with him as it makes her sea sick.  I explained that I would be out in five minutes and I would ride with him, he was somewhat okay with that.  I wanted to wait until B was asleep again before transferring him (and also felt a huge pang of guilt knowing that I wasn't going to get to spend much time with him at all today). 

I asked the nurse to help me transfer him and she asked if I could please hold him just a bit longer so they could do his blood work while he was calm in my arms.  This was after a few comments were made that I should just stay the rest of the day holding him because he was calm and happy...already feeling guilty thanks.  So I'm holding him waiting, watching the clock knowing that my Mom is dealing with T being upset that he can't actually go IN the elevator and Ry is charming the other nurses into keeping him occupied.  They come in and do the blood gasses (B was a champ) but then his heel wouldn't stop bleeding so I had to sit there holding onto that (tick tick tick).  While I am doing this the nurse turns on the TV for Ry to Treehouse (um, number one rule in parenting, don't turn on a tv show unless you are prepared for the child to watch the show...).  I explained to the nurse (again) that I had to go because my Mom and Torin were waiting for me and I hated to have to explain WHY it was important for me to chose to go to one child over holding the other.  Start to transfer Braeden back to the swing while all hell breaks loose in his room because all the sudden they are trying to move furniture around and are wheeling in a new roommate for him.  Gak!  Give baby to nurse (thank goodness he didn't start to freak out) while she comments that she is a poor substitute for Mom (I KNOW that these comments aren't meant to upset me and I'm sure she doesn't realize she is saying them but still...there are just some nurses that you'd prefer to have all the time, hence choosing a primary nurse for care).  I then apologize profusely to Rylan for 1) pushing his chair out of the way now that there are a ton of people in the room trying to get the new roommate in and 2) for turning off the tv when he just got to have it on.  Again, thank goodness Ry was begrudgingly accommodating and we went in search of Mom and T.  (exhausted yet??) 

We find T and I explain to Ry that he can either come in the elevators with T and myself OR he can go play for five minutes in the play area.  Ry to the play area, T to the elevators.  Elevator up, elevator down, elevator up, elevator down...repeat.  Out on the main floor to meet up with a crying Rylan because he is now wishing he'd chosen to leave with Grandma and Torin when they left the room because he's not had time to play.  Leave the hospital with Rylan pouting, down the elevator, up the elevator to the proper parkade floor and out to the van.  Get kids settled into the van, call Michael to turn on the potatoes for dinner (the meatballs I made before the hospital and are in the crock pot)  and we are off with Torin now in tears because I said that I wouldn't bring them back tomorrow.  We then drove home to Torin crying pretty much non-stop because he wants an elevator of his own and wants to know when exactly he'll get to see one next and why it can't be every day.  Did I also mention when the boys are tired and one of them cries inevitably the other ones cries because the first one is crying??  Home, leave Mike to talk to a still crying Torin now in his room, dinner (enter bailey's and hot chocolate), jammies, teeth, bedtime story x2 (because I am a super Mom) and shut the door.  SIGH.  Get myself ready for bed as I am suddenly exhausted, Torin is now up because he needs to use the washroom again, and finally back to bed.  Two hours sleep for me where I wake in a bit of a panic (not to worry this is my normal), and up to call the hospital to check on B (enter guilt that I'm not there to comfort him) and here I am.  Wide awake at midnight.

It's all really quite exhausting.  The sad part?  This only accounted for four hours of my actual day!  (Keeping in mind it wasn't a typical day in which I meet with Dr's or having to get kids to school and such)  Having a new baby at home would certainly be exhausting as well, but there would be at least things I could do while holding Braeden, like a puzzle with Rylan on the floor etc.  Like I said, I feel as though I live two lives.  I'm never really happy in one life or the other right now because there is a constant need from one child or the other and I can't in any way accommodate all three boys at once, it's not physically possible.  I've tried so hard to keep Torin and Rylan's lives as unaffected by all of this as possible but that only goes so far.  Sooner or later my Mom will need to go home again, she does have her own life and it's not like she signed up to help raise my kids too.  There is just no end in sight for Braeden's hospital life yet, it could still be several months of this dual lives and I'm not sure how much longer I can pull it all off.  I am certainly feeling stretched to the limit most days and my edges are certainly unravelling here and there.  It is also increasingly difficult knowing that Braeden knows when I'm there and can certainly be miserable when I am not, babies need and want comfort after all. He'll be 11 weeks old on Monday and so far he is being cared for by more people than I can even count, not his Mom.

I think one of the biggests things that I struggle with is that I feel somehow ripped off with Braeden.  I know he is our last child and I wanted to enjoy the pregnancy (didn't happen), and really enjoy watching him grow.  I don't get to have that transition when they are just new and you all (the whole family) change and grow around the baby.  I want to have him on the carpet kicking his feet and cooing at me not hooked up to a thousand machines that constantly beep.  Alas, that is the selfish side of me.  I really need to focus on the fact that I need to be so very appreciative that he is still here with us and I can at least love him albeit from afar some days.

The easiest explanation to how am I doing? I'm upright.