Another difficult night

So, last night I stayed on the couch till 1am. Went to bed and laid there playing on my phone till 2:30, at this time I fell into a restless sleep. Tossing and turning till 6:45-ish am. Then I refused to get out of bed till 9:30, when I had to drag my butt out of bed to make some coffee for my seriously sleep deprived brain to function. Drank a large cup, then left to have lunch with Will at SH. While there he told me he still liked being there, had a rough night and it was because he hadn't known what to expect at bedtime but he was all good now.

I called SH just a little while ago. He had a great day for the school part but then struggled of and on. Including bedtime. Where he refused to settle again, went to quiet room, started getting aggressive with staff. Had to leave quiet room as someone else needed it so he went in the sensory room and fell asleep there.

So it was still a rough day/night but it was better than night #1. So, even though I know he wants to be there, and things were better at bedtime, why do I find myself exhausted at 12:10am unable to shut my mind off and sleep? I have had way too many nights like this leading up to SH. Weds and last night were the worst. Hopefully it will get better for me too?

Mom and I are going to visit tomorrow morning. I know she's anxious to see him and his environment too.

But what to do the rest of the day? A good friend has invited me out tomorrow night, but I really am not up to a group of strangers, or anyone right now.

I did go to a friends house today for a few hours so that's good right?

Here's hoping for sleep tonight. For me and Will.

Long night

After going to bed at 2 in the morning and tossing and turning till 6:45. I gave up the fight and I'm actually awake for the day. I really NEED coffee right now, but seeing as 3hrs have gone by and I refuse to get out of bed, it may have to wait.

Our amazing case manager just called me. We agreed that Wills hard night at SH is a good thing. (even though it breaks my heart.) it means that he's not giving them a honeymoon period and they can see what's going on all the more quickly and start helping him.

That's good right? Thinking I need to get out of bed and get dressed so I can drink some coffee before seeing him for lunch. {They won't let you bring ANYTHING in the hospital. You have to lock up everything, even your keys --but they let you bring the locker key with you? How does that work and/or make sense?}

Breaking my heart

I just called Spring Harbor to see how Wills first day and bedtime went. I kind of wish I hadn't.

He had a rough patch at dinner time. I believe he was upset because he had to eat on the ward and not in the cafeteria. This is standard with new patients I guess. He settled down and ate in his room.

Bedtime did not go so well, he is still awake and screaming. He is on locked seclusion for the moment because he kept going after staff and trying to bite and hit staff.

I know he's where he needs to be, but I just want to hold him and lay with him till he falls asleep. I want to hug him and tell him I understand and everything will get better, but I can't. Cause he's there and I'm here, without him.

Breathe

So, here I am 6 hours and way too much junk food later. My heart is racing, it's hard to breathe occasionally, and I'm lost without my heart. I'm ok when stuffing my face and/or watching mindless tv, but as soon as the commercials come on is when it's hard to breathe and my heart races even more.

I look around my house and its so quiet, and he's not here. This does get easier right?

Is it sad that I'm counting the minutes until lunch tomorrow with Will?

I'm assuming that this will get easier as time goes on, but right now this REALLY, REALLY sucks!

Don't mind my rant, this is the best thing for Will. I know that. I do. It's just an adjustment period I'm sure.

For now I will just breathe........

Spring Harbor

I dreaded telling Will about the hospital. I didn't know how or when, so I gave it up to God to decide the when and how. When the time came he was all for it as long as they helped him to not hurt all the time. He's actually been bugging me about when.

We got the call Monday that today was the day. Will could barely sleep last night he was so excited. He helped pack his bag last night. He can take only a limited amount of stuff, but he didn't mind.

I let Will sleep with me last night. (Pretty sure it was more for me than him). It took forever for him to fall asleep, then I spent the night cuddling and listening to him breathe (and snore). We played this morning then left the house. We went to Dunkin Donuts for breakfast with his dad. (thought Will might enjoy it, even though I'm having a hard time being around "dad" lately). I know Will has a tendency to eat fast, but wow! He inhaled that donut and chocolate milk! Then wiped his mouth on the bag!

I spent 4+ hours being bombarded with questioned by the team at the hospital so they can start his behavioral plan. After I went in search of my son, he was hanging in the sensory room having fun. He gave me a hug and told me he loved me and sent me on my way.

I was quite proud of myself. I was upbeat and smiling and joking before and during the meeting. Walking out the door is when I started falling apart. I am now home, and have been for 1&1/2 hrs now. I don't want to be here! I don't want to be anywhere. I want my son back with me.

I guess it's easier knowing he wants to be there, and is getting the help he needs. I can't imagine how I'd feel if he didn't want to be there. So now it's dealing with my own feelings on the matter, however, I'm not real good with that. Guess I better get better at it huh?

That's it for now, I'm going to hibernate for a while, visit Will tomorrow and breathe, just breathe........

The time is fast approaching.

I know I told you about our Christmas vacation, but did I tell you why we spent such a quiet week?

Well, I know I've told you we have been discussing having Will go to Spring Harbor after the new year. Guess what? The new year has come and gone. I have been panicking since Christmas about this day.

I went to a meeting at Spring Harbor on the 11th. Our case manager Jen and I put in the referral that day. 5 days later we were told he was accepted and put on the wait list. Well, we just got the call Friday saying that while we don't have the exact date, it will be the week of the 30th.

I can't convey the feelings going through me any more. I'm hopeful, worried, terrified, and have a hole in my heart that's so large I can't explain it. I feel like I've failed my child. I can't fix this for him!!! That's my job. I'm supposed to fix it for him.

Now, I don't need anyone to tell me it's not true. Intellectually I know this. But whether it's a "mom" thing or just the impossibly high standards I have set for myself, I still feel like a failure.

The panic is setting in as the time draws closer. What do I do when I'm all alone in my house? No one to come home to and cuddle in bed with. I know I can visit him, but they made it quite clear they don't want me to visit too much. I've never been away from Will for more than less than 48 hours. How do I make it for up to 2 months? How do I keep from falling apart when I do see him? When I drop him off?

I guess it helps that when I brought up the subject he got excited and told me he wants to go. Now I don't have to worry about how he'll react when he goes, although I'm pretty sure it won't be what he thinks it will be.

As much as I wish I could wave a magic wand and fix everything for Will, I know it's not within my ability. This is why as painful as it is I decided this is where he needs to be for now.

When your child watches a commercial for St Jude's hospital and tells you he wouldn't mind having cancer because he wants to die anyway, what else can you do but go to the extreme.

But what do I do if they can't help him either? Where will I go then to keep him safe and give him the happy childhood he so deserves. I know, I know. I'm getting ahead of myself. I need to think positively. I need to believe they can help because the alternative is too scary to contemplate.

If anyone is actually read this..... Please pray for my child. He needs everything everyone can give him. He deserves so much more than I have been able to do for him. I want him to want to live. Cause if ANYTHING were to happen to this miracle of mine I'm not sure I'd be strong enough to carry on. So please pray.

I'm trying to stay positive, but it's been hard lately and will only be getting harder for a while. The light at the end of the tunnel is that this will help and put us on track.

What I did on Christmas vacation

Well, for starters, I worked.  I did not get to take the week off just because Will had it off.  I did however get Christmas day off as my clients had gone home for the holiday.  Yeah!  So, other than work what did I do?  I spent that time with Will and/or reading.  That's right, no computer time for me.  No TV (ok, well maybe an hour or 2 of TV for the week, but for me that's saying a lot!)

I spent Christmas eve at my parents home with Will, my parents, and my brother and his wife Meg.  We had a great time.  Will got a trampoline and many other gifts.  We had a great meal and lots of family time until it was time for Will and I to go home.

Will at dinner wearing his crown from the Christmas popper

Joshua and Meg wearing their crowns

Mom and Dad wearing their crowns and dad holding up some lobster meat from the stew.  Not sure why that had to make it in the shot......

So, we got home, I let Will play with some of his new toys before bed.  He didn't realize that the present from Josh and Meg was a trampoline till I put it together.  He's spent more time on that than I can tell.  Thanks uncle Lazer and aunt Meg.... (don't ask about the name, Joshua won't recognize Will calling for him unless he's called uncle Lazer.)

Lots of bouncing.....

Had to make him stop to get a picture that wasn't blurry...

So, off to bed to wait for Santa........problem was he couldn't fall asleep.  I have never seen him this excited about Santa before.  He kept calling down asking if he'd been yet.  I had to keep going upstairs and laying with him till he fell asleep, but he kept waking up.  Thank goodness his presents were already wrapped.  All I had to do was put them under the tree and do the stocking.  I ended up with him "sleeping" in my bed. (tossing and turning and constantly waking up to ask if he could go down and check if Santa had been yet.)  Needless to say, no sleep for mommy.

Christmas morning saw us up and down stairs (more or less awake) at 5am.  What a morning that was.  He even asked if Santa brought me any presents, he seemed a little sad that I didn't get anything under the tree- but soon lost himself to the excitement and wonder of too many toys and games. :-)

The smiles are such a wonderful thing to see.

STAY AWAY FROM THE TOYS!

The rest of the time we spent playing and just being with each other.  We played all of his games.  Scrabble, Battleship, Mencala, Cranium, I spy, and our favorite by a mile........Sequence.  Now, we already had Scrabble, but this was different, it had 6 boards, so we could play it 6 ways.  It was a lot of fun.
Of course, there was also a lot of wii.  As he got 3 new games for that, as well as some for his Nintendo DS.  Way too much time on electronics, but it was vacation so he had a little (LOT) of leeway.  We also did some crafts and other activities:

made a hedgehog, raccoon, and a bone out of some model magic type stuff.

He was looking for gems and minerals in this clay brick.  There are 13 in there.  We will get back to digging as soon as I get him some more comfortable goggles.  I tried these and he's right.  They hurt!

And lots of drawing and paper crafts.  He is very imaginative and thanks to his Grampy, he has all the paper he could want to make his computers, games etc.....

 Vacation was such a nice time with Will and I already miss it.  I spent a lot of the time not talking to anyone else and jealously hoarding all my time with Will.  I guess it's time to start coming out of my hibernation and joining the world again.  Although, I don't think I'll spend as much time with computers and TV as I used to.  I definitely enjoyed not being a slave to them this past week.

Hope your vacation was great as well.