My brother sent me an email with this song he wanted me to hear.
He sent it to me March 8...I just opened it today. He kept asking if I had listened to it and I kept telling him "not yet."
Not yet...because I didn't want to cry, feel sad and emotional...I have plenty of that on a daily basis, don't need to add to that daily dose.
For some reason this evening I finally opened the email and clicked on the link and it was absolutely beautiful...like he told me it was.
Not sure when this came out, or if this is one of those that is passed along and well known in the bloggy world BUT it was new for me and very touching and sadly, the lyrics hit too close to home for my little Hudson.
Below the lyrics is a short background on the story behind the song.
This little girl never got a diagnosis but it really looks like, in my opinion, a strong possibility of Mito disease...I wonder.
The Lyrics;
She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me
I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me
I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me
Collin’s Story:
“She’s With Me” is a tribute to my granddaughter, Haley, very, very special - and very ill with a neurological condition that no one’s been able to diagnose, and it’s regressive … for six years, I’ve been having this in my heart. It’s very hard to write about things like this, because nothing is ever good enough for her, and it’s hard to put into words how you feel.
The idea of “She’s With Me” struck me about a year or so ago. Thinking in this life she can’t do anything for herself. She comes and goes because she’s with me, and then I related it to the after life thinking, well, if I’m lucky enough to ever be standing in front of the Lord or St. Peter … maybe, she’ll be standing there and say, “Well, it’s okay, because he’s with me.”
Collin has been a tireless advocate for Haley and realizes the extraordinary toll that a child’s medical condition and the resulting expenses can place on a family - especially in such a terrible economy. That is why he has joined with OK to raise funds for organizations helping these children and families to be able to get treatment, transportation and housing dictated by often long, expensive hospital stays.
A link for further info and support page.
Saturday, April 10, 2010
Thursday, April 8, 2010
As I sit here...
Hudson sounds like a gurgle-mix master. I just can't believe this never completely goes away.
I know...I have been told he will probably always sound "junky" because of his muscle tone, and the secretions just pool in the back of his throat. I hate hearing it, I hate that he can't breathe simply....and yet his sats never really go down much in the hospital so I know he is getting enough oxygen BUT it is just coming to grips knowing this is his normal...and it is far from normal!
I pleaded my case many times while we sat in the hospital this last go around. I just threw it out there...because nobody has ever come to me with it.....
Could his formula be a part of the problem? Is it possible? Can it hurt to try a simpler formula and see if it helps?
The dieiticaian came in our room minutes before discharge...so I quickly ranted about how I would like to *try* a formula that would be easier on his system...etc, etc. So she gave me a few days worth of a new formula and said try it and see if you notice anything. I wanted to get Hudson as much to a baseline as possible before trying this....I finally decided to try last weekend...and I think it may have helped...but I am not certain....I start questioning...
was I seeing the bubbling around his mouth?
did he sound THIS junky?
was I suctioning as much?
So I called this week and requested more...
because can you really even be certain there is a change after 3 days of trying a new formula?
Right now I think the new formula was helping. I hope when I get the 10 day supply, I will have a better idea.
We are trying Peptamin Jr.(sp?) It is suppose to be pre-digested, easier on the system....really could use some prayer that this gives some relief to the never ending junky battle of Hudson vs. mucuos!
I am also now certain about his sporadic bouts of vomiting. I am convinced it is 100% seizure related. It is always after a very hard tonic...but not after every hard tonic. His breathing gets very weird and his mouth gets stiff...I can't even get the suction catheter in his mouth to try and help with the gurgles...his tongue is in battle as I try to help. If he has this type of seizure and hasn't been fed recently he doesn't vomit, he just goes through the motions. Which leads me to the next.....
wonderful tweak that I made in his daily routine.....
Hudson gets 24 oz. a day...which would consisted of 6-4oz. bottles. A few months ago I was blogging about having to give his last feed around 11:30 and then waiting til sometimes 1 a.m. to make sure he doesn't vomit in his crib...exhausting! Well, I changed it up and it has been heavenly! Now he gets 4- 5oz bottles and 1-4oz. bottle around 8:30-9, and then an hour late I just give him his last 3 meds with water. It has been so nice to eliminate that worry...I sleep knowing he is not going to throw up in his or my sleep. Why didn't I think of this sooner? Oh well...one problem resolved!
Looks like I will be heading to Vegas next week.......
everything is done and the closing is next Thursday. So we are very soon to be owners of a
"vacation home".....
I wish it was as good as it sounds....like we did this by choice....cuz life is just good like that....HA!
I am grateful we are able to purchase this...as we hope regardless of where Paul is working in the future...it will be a *vacation home* some day...for all of us..... and a good investment as well. Again...just stinks that he is "vacationing" there a lot more than we are!
I am probably going to have to leave Wed. night as the closing is set for 11:15 a.m. on Thursday. Paul would really like me to stay until Sunday.
I would too....just really can't expect anyone to watch my kids that long....
even if it is my mom and Fred...I think I will feel to guilty.....sun...palm trees...husband...no kids....
yes I am certain I will feel guilty and feel the need to run back home to my babies so no one feels overwhelmed....
it didn't help that at my mom's, on Easter, Hudson's G-tube button popped right out of his tummy and had to be replaced. I think the new meds are eating away at the balloon...it had several holes, we have never had that happen to a balloon before! There was a bit of panic, and I know it freaked my mom a bit, thinking if this happened while she was alone taking care of him ...I understand...I would never be doing what I am doing, mindlessly, if it weren't for Hudson...did I ever mention I used to be medically challenged?
anyways...back to Vegas and my kids....
I am sure my kids wouldn't mind though....Nanna and Mr. Fred spoils them good....they would probably not be missing me! Not sure how any of this will work...BUT ....I do know I have to go down to sign papers and Paul would really like me to be there and show me our new place.
All I have seen are pics and specs....it is 1600 sq. ft. 3 bedroom plus a loft with a fireplace, 2.5 bath, built in 2007....We think it was the model cuz it has many upgrades such as granite, tile, etc.
Prayers for our week ahead would be greatly appreciated....mainly for Hudson's new formula to make a positive change...and if you feel inclined....prayers that I get some good, relaxing time with my husband!
** I added a mito video on the bottom of my blog...I found it on another blog of a mito mom and it made me cry a river...too many kids suffering like my baby....check it out...not that I want you crying too or anything!**
I know...I have been told he will probably always sound "junky" because of his muscle tone, and the secretions just pool in the back of his throat. I hate hearing it, I hate that he can't breathe simply....and yet his sats never really go down much in the hospital so I know he is getting enough oxygen BUT it is just coming to grips knowing this is his normal...and it is far from normal!
I pleaded my case many times while we sat in the hospital this last go around. I just threw it out there...because nobody has ever come to me with it.....
Could his formula be a part of the problem? Is it possible? Can it hurt to try a simpler formula and see if it helps?
The dieiticaian came in our room minutes before discharge...so I quickly ranted about how I would like to *try* a formula that would be easier on his system...etc, etc. So she gave me a few days worth of a new formula and said try it and see if you notice anything. I wanted to get Hudson as much to a baseline as possible before trying this....I finally decided to try last weekend...and I think it may have helped...but I am not certain....I start questioning...
was I seeing the bubbling around his mouth?
did he sound THIS junky?
was I suctioning as much?
So I called this week and requested more...
because can you really even be certain there is a change after 3 days of trying a new formula?
Right now I think the new formula was helping. I hope when I get the 10 day supply, I will have a better idea.
We are trying Peptamin Jr.(sp?) It is suppose to be pre-digested, easier on the system....really could use some prayer that this gives some relief to the never ending junky battle of Hudson vs. mucuos!
I am also now certain about his sporadic bouts of vomiting. I am convinced it is 100% seizure related. It is always after a very hard tonic...but not after every hard tonic. His breathing gets very weird and his mouth gets stiff...I can't even get the suction catheter in his mouth to try and help with the gurgles...his tongue is in battle as I try to help. If he has this type of seizure and hasn't been fed recently he doesn't vomit, he just goes through the motions. Which leads me to the next.....
wonderful tweak that I made in his daily routine.....
Hudson gets 24 oz. a day...which would consisted of 6-4oz. bottles. A few months ago I was blogging about having to give his last feed around 11:30 and then waiting til sometimes 1 a.m. to make sure he doesn't vomit in his crib...exhausting! Well, I changed it up and it has been heavenly! Now he gets 4- 5oz bottles and 1-4oz. bottle around 8:30-9, and then an hour late I just give him his last 3 meds with water. It has been so nice to eliminate that worry...I sleep knowing he is not going to throw up in his or my sleep. Why didn't I think of this sooner? Oh well...one problem resolved!
Looks like I will be heading to Vegas next week.......
everything is done and the closing is next Thursday. So we are very soon to be owners of a
"vacation home".....
I wish it was as good as it sounds....like we did this by choice....cuz life is just good like that....HA!
I am grateful we are able to purchase this...as we hope regardless of where Paul is working in the future...it will be a *vacation home* some day...for all of us..... and a good investment as well. Again...just stinks that he is "vacationing" there a lot more than we are!
I am probably going to have to leave Wed. night as the closing is set for 11:15 a.m. on Thursday. Paul would really like me to stay until Sunday.
I would too....just really can't expect anyone to watch my kids that long....
even if it is my mom and Fred...I think I will feel to guilty.....sun...palm trees...husband...no kids....
yes I am certain I will feel guilty and feel the need to run back home to my babies so no one feels overwhelmed....
it didn't help that at my mom's, on Easter, Hudson's G-tube button popped right out of his tummy and had to be replaced. I think the new meds are eating away at the balloon...it had several holes, we have never had that happen to a balloon before! There was a bit of panic, and I know it freaked my mom a bit, thinking if this happened while she was alone taking care of him ...I understand...I would never be doing what I am doing, mindlessly, if it weren't for Hudson...did I ever mention I used to be medically challenged?
anyways...back to Vegas and my kids....
I am sure my kids wouldn't mind though....Nanna and Mr. Fred spoils them good....they would probably not be missing me! Not sure how any of this will work...BUT ....I do know I have to go down to sign papers and Paul would really like me to be there and show me our new place.
All I have seen are pics and specs....it is 1600 sq. ft. 3 bedroom plus a loft with a fireplace, 2.5 bath, built in 2007....We think it was the model cuz it has many upgrades such as granite, tile, etc.
Prayers for our week ahead would be greatly appreciated....mainly for Hudson's new formula to make a positive change...and if you feel inclined....prayers that I get some good, relaxing time with my husband!
** I added a mito video on the bottom of my blog...I found it on another blog of a mito mom and it made me cry a river...too many kids suffering like my baby....check it out...not that I want you crying too or anything!**
Monday, April 5, 2010
One day isn't enough!
I didn't think a "quick" visit would be that hard...
but...
it was hard on ALL of us.
I almost think it would have been easier to not see my husband come home for Easter.
I sorta get in a groove when he is not here after a while....
and I am o.k.
until something happens...
like the garage spring springing off it's hinges....
(that is unless Fred comes by to save the day!)
or like tonight....
when I am making a "cute snack" for Hailey's K-class
(I notice at 7 p.m. as Hailey hands me her "friday" folder, which I didn't get before spring break and today is now MONDAY not FRIDAY and I see Austin on the calendar for a "cUte" (long U week) snack!)
Avoiding having to go to the grocery store I grab a cake box and make mini cupcakes with sprinkles and frosting.
As we grab the baking stuff the kitchen cabinet falls off the hinges!
I hate being in this house...alone...when things like this happen.
I got the screwdriver, tried calling my husband...no answer. My mom (?) ...no clue....
I think I said a few choice words under my breath as I was trying to screw the hings back...not happening!
Thankfully my brother rolled into town tonight, and came to my rescue.
I am not a man and I certainly do not operate man tools....period! I am simply no good at it!
I didn't get married to be alone...sometimes it just really blows to be in this situation!
Paul's plane got home an hour late Friday night....bringing him in at 10ish.
By the time we got home it was 11ish and we were all wiped!
Saturday was the token day.
But it wasn't enough!
I just got used to having his arm around me.
Having his hand to hold.
His hand to help :)
A kiss here and there.
His warmth.
snuggle.
My partner.
I am a wife...
besides a mom 24/7....
when he is gone....
I miss being a wife.
Never thought certain things would hit me as they have through the past 2 months.
But I have been his wife for almost 14 years....and we have been together 18.....
and that is almost half my life! (ok...I am 37!)
There were many tears shed at 4ish on Sunday.
I talked to my husband today and we agreed...
no more 1 day-ers....too hard on all of us!
The quickest will be coming home on Thursday night and leaving Monday morning.
That is more bearable.
On another note....
Hudson had his Saneto apt.
Pretty uneventful as I had thought it would be.
An increase in Lamictal over 2 weeks.
A blood draw to bank his DNA....
for some mito-thingy that is in the works and may help with pin-pointing a gene.
I really didn't ask a whole lot of questions....
only 1..........
Do you have miracle in the works for us????
We are waiting.
Which comes on the heels of Hailey's most recent question.....
"Mommy....I have been praying for Jesus to heal Hudson for sooooo long....
why hasn't he answered my prayer?"
I hate for her faith to be or feel questionable.
I ask the same.
I told her that sometimes our prayers don't get answered the way we think they should.
Sometimes God has other plans.
Sometimes we just have to be patient.
Sometimes we need to realize we may not get the answer we want....
sometimes the answer is "No"
Tough stuff.
Why I was chosen for this...
I will never know.
I feel so on the brink of loosing.....
my patience
my mind
my smile
my joy
I told Pam and Dr. Saneto today....
that this life Hudson is living is not living at all.
I feel like he simply exists...
and it kills me...
because I know there is a little boy in there...
I almost imagine himself walking out of his broken body...
stepping out of the seizures...
stepping out of the fog of meds...
I can hear him calling...
"hear I am...this is me"
It is as if he wears a mask..
and he can't slip it off...
not today anyways.
Thankfully we have a busy week ahead.
My brother is here until Thursday.
My mom's birthday is Wednesday.
But right now...
today...
I really miss my husband.
but...
it was hard on ALL of us.
I almost think it would have been easier to not see my husband come home for Easter.
I sorta get in a groove when he is not here after a while....
and I am o.k.
until something happens...
like the garage spring springing off it's hinges....
(that is unless Fred comes by to save the day!)
or like tonight....
when I am making a "cute snack" for Hailey's K-class
(I notice at 7 p.m. as Hailey hands me her "friday" folder, which I didn't get before spring break and today is now MONDAY not FRIDAY and I see Austin on the calendar for a "cUte" (long U week) snack!)
Avoiding having to go to the grocery store I grab a cake box and make mini cupcakes with sprinkles and frosting.
As we grab the baking stuff the kitchen cabinet falls off the hinges!
I hate being in this house...alone...when things like this happen.
I got the screwdriver, tried calling my husband...no answer. My mom (?) ...no clue....
I think I said a few choice words under my breath as I was trying to screw the hings back...not happening!
Thankfully my brother rolled into town tonight, and came to my rescue.
I am not a man and I certainly do not operate man tools....period! I am simply no good at it!
I didn't get married to be alone...sometimes it just really blows to be in this situation!
Paul's plane got home an hour late Friday night....bringing him in at 10ish.
By the time we got home it was 11ish and we were all wiped!
Saturday was the token day.
But it wasn't enough!
I just got used to having his arm around me.
Having his hand to hold.
His hand to help :)
A kiss here and there.
His warmth.
snuggle.
My partner.
I am a wife...
besides a mom 24/7....
when he is gone....
I miss being a wife.
Never thought certain things would hit me as they have through the past 2 months.
But I have been his wife for almost 14 years....and we have been together 18.....
and that is almost half my life! (ok...I am 37!)
There were many tears shed at 4ish on Sunday.
I talked to my husband today and we agreed...
no more 1 day-ers....too hard on all of us!
The quickest will be coming home on Thursday night and leaving Monday morning.
That is more bearable.
On another note....
Hudson had his Saneto apt.
Pretty uneventful as I had thought it would be.
An increase in Lamictal over 2 weeks.
A blood draw to bank his DNA....
for some mito-thingy that is in the works and may help with pin-pointing a gene.
I really didn't ask a whole lot of questions....
only 1..........
Do you have miracle in the works for us????
We are waiting.
Which comes on the heels of Hailey's most recent question.....
"Mommy....I have been praying for Jesus to heal Hudson for sooooo long....
why hasn't he answered my prayer?"
I hate for her faith to be or feel questionable.
I ask the same.
I told her that sometimes our prayers don't get answered the way we think they should.
Sometimes God has other plans.
Sometimes we just have to be patient.
Sometimes we need to realize we may not get the answer we want....
sometimes the answer is "No"
Tough stuff.
Why I was chosen for this...
I will never know.
I feel so on the brink of loosing.....
my patience
my mind
my smile
my joy
I told Pam and Dr. Saneto today....
that this life Hudson is living is not living at all.
I feel like he simply exists...
and it kills me...
because I know there is a little boy in there...
I almost imagine himself walking out of his broken body...
stepping out of the seizures...
stepping out of the fog of meds...
I can hear him calling...
"hear I am...this is me"
It is as if he wears a mask..
and he can't slip it off...
not today anyways.
Thankfully we have a busy week ahead.
My brother is here until Thursday.
My mom's birthday is Wednesday.
But right now...
today...
I really miss my husband.
OUR EASTER.....
(Hudsie...the easter egg!)
The Hunt is on!
Thursday, April 1, 2010
Spring WHAT?
Spring Break is certainly not the term I would use for my week. The kids? yeah, it's their spring break, but we have done pretty much nothing...for many reasons!
I don't want to sit here and complain, but it has been one of those weeks...and no BREAK for me!
Love my kids dearly but having all three home 24/7 and no Daddy walking through the door at 6 p.m....well you get the picture...haven't had a glass of wine since last week, but broke down and bought a bottle today....looks like a glass of vino will be the only break I get in this spring break!
So...
my first gripe is the weather! We have been stuck inside, at home, day after day watching it rain cats and dogs, hail, wind.
Wouldn't be so bad if I could spend money...BUT if all goes through and we get this 2nd home, we have to conservatively watch every dollar we spend...NOT fun! Especially when it is pouring and you've got 3 kids!
The fact the week started with me feeling irritable and edgy, well pretty much snapping and getting irritated with everything and everyone, which is pretty much my kids, cuz we haven't gone anywhere with anyone and haven't done anything with anyone....my poor kids....thank goodness that has passed, if you know what I mean ;)
We thought we would go to Portland...to visit my brother, but it didn't happen. Didn't want to spend the money on gas...yes..... that conservative!
My dear hubby comes home tomorrow.....NIGHT....and leaves Sunday at 6:50 p.m.
so it leaves one (1) full-family day together, Saturday.
For me...it is almost harder...to see him come and go that quickly.
For him...it would be unbearable not to come home for Easter...I understand that....just stinks that I have to deliver him back to the airport Easter Sunday.
This is our life.
Our outings and happening have been few....
I took Hunter to a new *indoor* skatepark that opened up practically across the street from us (but we had to drive because of the rain and hail!)
$ 5.00 for 3 hours of skate boarding! This place was bare bones....no heat, a few chairs and folding tables, and packed with 30+ kids!
(Pardon my blackberry camera quality pics)
The nice thing is they have 2 sections...one for 13 and younger and the other side open to all. The 13 and younger was packed! When we went in, the guy that showed us around was pretty young...in fact they, in my estimation, all seemed like 19 and younger. Anyways, I asked about razors, because Hailey has a 3 wheeled raczor, but she doesn't skateboard, but they only allow boards...but this young guy informs me I am welcome to just drop him off. So I am putting the math together....3 hours for $5....that's cheap babysitting! But I couldn't do it....and anyone who knows me isn't surprised that I was the only parent, sitting there, with a 6 year old and a stroller baby as my son skated for 21/2 hours....among 30+ kids.... I was the only parent!!!!
Most of the kids were 13 and younger ....left!
It was tempting... but no way....no one was manning the door, I saw many characters walk in and out....no way did I feel remotely o.k. leaving my 8 year old for 3 hours...so I froze(brrrrrr..), Hailey colored, Hudson stared....
Hunter was happy!
Other happenings....Fred had day surgery on Wed. so I made a big pot of homemade chicken soup, and Hailey made cards and we made chocolate chip cookies. My mom delivered.
Felt good to finally do something for Fred.
My escape.....this is bad....but I blame my brother.....
I noticed a few days ago we had a "free-view" of showtime and my brother for months has been talking about Dexter. So it was free and I watched.....
the whole 4th season....that's 12 episodes in like 4 days. I put it on when the kids are tuckered out, watching a movie, and I stay up until 1 a.m. watching this sick, twisted, demented show...and I am hooked! (thanks Marc!) So envision the highlight of my gawd-awful spring break watching this twisted show and texting back and forth as my brother and I are watching episode after episode in sync....yes, I admit, I have no life!!!! I am hooked though and not happy about it! Please, somebody out there, tell me your hooked too!?!?!? I am staying up until 1 a.m. people...this is bad! When Hunter said he hasn't spent any time with me because I am always watching Dexter at night, I told him "who is with you ALL day?" thinking.....is it too much too watch a adult show, by myself at 9 p.m., with out kids???? Hunter knows how to get to me, I guess it is good we don't subscribe to showtime!
My garage spring busted today....great! Called Fred.
Speaking of which, Fred has surgery Wed. and plans to come here tomorrow to take my kids out for some spring break fun, and give me time alone with Hudson and go do whatever! I told him not to, but he says he will take them to Chuk E Cheese or bowling...whatever they want...his gift for Easter, or spring break or just to make me sane again! Good ole' Fred!
Hudson....
Well, I thought we had turned a corner Sunday...but really? He STILL sounds junky, I am STILL suctioning, and I wonder if he will ever sound gunk-less! This is never ending.
I am definitely not getting much out of his nose when I deep suction that way...that has cleared up alot, but he just gunks up in the back of his throat so quickly. He is not coughing as much and not spitting out as much, but it is still there, just not as bad.
I also realize I should keep my mouth shut, with any praises and Hudson. I mentioned to someone that Hudson never has those crying sprees he used to have, and what happens? 2 days in a row of hours of crying...loosing my mind kind of crying...the attacker just waiting to get me while I am down...seriously...so I say nothing. Seizures got better, now bad again...really bad....gggrrrrr.
Pam called me.....she called me....I am always calling her....but she called me, to check on Hudson. I told her pulmonary called and scheduled an appointment for Dr. Carter and Dr. Saneto and our apt. wasn't until May 26, and guess what......that was pushed up to Monday, April 4....THIS Monday! Amazing when you work with the source, huh? I pretty much know what will happen this next appointment, but prayers are always appreciated in our upcoming visit.
Lastly....
Wishing all a glorious Easter....I won't be blogging til next week...... I will be soaking up my husband and my kids enjoying their Daddy....and praising God.....Jesus is so awesome....so life- giving......
tomorrow I will go with my kids, before picking up Paul, and reflect on how my sins nailed Jesus to the cross...
and Sunday will celebrate a living, loving, God ....who transforms and gives new life.
HAPPY EASTER!
Love...Deb
******************
HELP....
so I post on how I don't want Hailey to grow up and guess what Hunter discovers?
STARS...2 of them...on our espresso leather sectional!!!!
HAILEY!!!!!!
She denied doing it...but we all know it was her...because she recently discovered how to make a star and there are all of these sticky notes around the house with stars on them...by artist Hailey...so...
does anyone know what to use to get ink out of leather? I googled it and tried toothpaste and vinegar and didn't work....anyone have any suggestions??????
I don't want to sit here and complain, but it has been one of those weeks...and no BREAK for me!
Love my kids dearly but having all three home 24/7 and no Daddy walking through the door at 6 p.m....well you get the picture...haven't had a glass of wine since last week, but broke down and bought a bottle today....looks like a glass of vino will be the only break I get in this spring break!
So...
my first gripe is the weather! We have been stuck inside, at home, day after day watching it rain cats and dogs, hail, wind.
Wouldn't be so bad if I could spend money...BUT if all goes through and we get this 2nd home, we have to conservatively watch every dollar we spend...NOT fun! Especially when it is pouring and you've got 3 kids!
The fact the week started with me feeling irritable and edgy, well pretty much snapping and getting irritated with everything and everyone, which is pretty much my kids, cuz we haven't gone anywhere with anyone and haven't done anything with anyone....my poor kids....thank goodness that has passed, if you know what I mean ;)
We thought we would go to Portland...to visit my brother, but it didn't happen. Didn't want to spend the money on gas...yes..... that conservative!
My dear hubby comes home tomorrow.....NIGHT....and leaves Sunday at 6:50 p.m.
so it leaves one (1) full-family day together, Saturday.
For me...it is almost harder...to see him come and go that quickly.
For him...it would be unbearable not to come home for Easter...I understand that....just stinks that I have to deliver him back to the airport Easter Sunday.
This is our life.
Our outings and happening have been few....
I took Hunter to a new *indoor* skatepark that opened up practically across the street from us (but we had to drive because of the rain and hail!)
$ 5.00 for 3 hours of skate boarding! This place was bare bones....no heat, a few chairs and folding tables, and packed with 30+ kids!
(Pardon my blackberry camera quality pics)
The nice thing is they have 2 sections...one for 13 and younger and the other side open to all. The 13 and younger was packed! When we went in, the guy that showed us around was pretty young...in fact they, in my estimation, all seemed like 19 and younger. Anyways, I asked about razors, because Hailey has a 3 wheeled raczor, but she doesn't skateboard, but they only allow boards...but this young guy informs me I am welcome to just drop him off. So I am putting the math together....3 hours for $5....that's cheap babysitting! But I couldn't do it....and anyone who knows me isn't surprised that I was the only parent, sitting there, with a 6 year old and a stroller baby as my son skated for 21/2 hours....among 30+ kids.... I was the only parent!!!!
Most of the kids were 13 and younger ....left!
It was tempting... but no way....no one was manning the door, I saw many characters walk in and out....no way did I feel remotely o.k. leaving my 8 year old for 3 hours...so I froze(brrrrrr..), Hailey colored, Hudson stared....
Hunter was happy!
Other happenings....Fred had day surgery on Wed. so I made a big pot of homemade chicken soup, and Hailey made cards and we made chocolate chip cookies. My mom delivered.
Felt good to finally do something for Fred.
My escape.....this is bad....but I blame my brother.....
I noticed a few days ago we had a "free-view" of showtime and my brother for months has been talking about Dexter. So it was free and I watched.....
the whole 4th season....that's 12 episodes in like 4 days. I put it on when the kids are tuckered out, watching a movie, and I stay up until 1 a.m. watching this sick, twisted, demented show...and I am hooked! (thanks Marc!) So envision the highlight of my gawd-awful spring break watching this twisted show and texting back and forth as my brother and I are watching episode after episode in sync....yes, I admit, I have no life!!!! I am hooked though and not happy about it! Please, somebody out there, tell me your hooked too!?!?!? I am staying up until 1 a.m. people...this is bad! When Hunter said he hasn't spent any time with me because I am always watching Dexter at night, I told him "who is with you ALL day?" thinking.....is it too much too watch a adult show, by myself at 9 p.m., with out kids???? Hunter knows how to get to me, I guess it is good we don't subscribe to showtime!
My garage spring busted today....great! Called Fred.
Speaking of which, Fred has surgery Wed. and plans to come here tomorrow to take my kids out for some spring break fun, and give me time alone with Hudson and go do whatever! I told him not to, but he says he will take them to Chuk E Cheese or bowling...whatever they want...his gift for Easter, or spring break or just to make me sane again! Good ole' Fred!
Hudson....
Well, I thought we had turned a corner Sunday...but really? He STILL sounds junky, I am STILL suctioning, and I wonder if he will ever sound gunk-less! This is never ending.
I am definitely not getting much out of his nose when I deep suction that way...that has cleared up alot, but he just gunks up in the back of his throat so quickly. He is not coughing as much and not spitting out as much, but it is still there, just not as bad.
I also realize I should keep my mouth shut, with any praises and Hudson. I mentioned to someone that Hudson never has those crying sprees he used to have, and what happens? 2 days in a row of hours of crying...loosing my mind kind of crying...the attacker just waiting to get me while I am down...seriously...so I say nothing. Seizures got better, now bad again...really bad....gggrrrrr.
Pam called me.....she called me....I am always calling her....but she called me, to check on Hudson. I told her pulmonary called and scheduled an appointment for Dr. Carter and Dr. Saneto and our apt. wasn't until May 26, and guess what......that was pushed up to Monday, April 4....THIS Monday! Amazing when you work with the source, huh? I pretty much know what will happen this next appointment, but prayers are always appreciated in our upcoming visit.
Lastly....
Wishing all a glorious Easter....I won't be blogging til next week...... I will be soaking up my husband and my kids enjoying their Daddy....and praising God.....Jesus is so awesome....so life- giving......
tomorrow I will go with my kids, before picking up Paul, and reflect on how my sins nailed Jesus to the cross...
and Sunday will celebrate a living, loving, God ....who transforms and gives new life.
HAPPY EASTER!
Love...Deb
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HELP....
so I post on how I don't want Hailey to grow up and guess what Hunter discovers?
STARS...2 of them...on our espresso leather sectional!!!!
HAILEY!!!!!!
She denied doing it...but we all know it was her...because she recently discovered how to make a star and there are all of these sticky notes around the house with stars on them...by artist Hailey...so...
does anyone know what to use to get ink out of leather? I googled it and tried toothpaste and vinegar and didn't work....anyone have any suggestions??????
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Hudson Tyler
Our sweet angel!