Category Archives: Life

Moments that Matter

While taking a study break from my finals a friend shared this video clip with me.

A short while into it I was crying quite a bit.  The hardest part of school for me is being away from my children, especially while studying for finals but I have to remember that I’m sacrificing right now for them so that our future may be a bit brighter.

I was touched to be able to remember all the moments that matter most to me with my family.  We tend to treasure many moments more dearly because of adversity.  Autism, epilepsy and mommy having cardiomyopathy have all taught us to cling to those memories.  To laugh together and treasure the moments that sparkle.  To unplug and just be.

Be with each other, be attentive, be responsive, be loving.  I know we share these moments that matter the most, and because of that my heart is full of joy as I approach this hellish week of finals.

Next week it will just be us.  Our family, sharing even more moments that matter thanks to a help from our Fairy Godmother.  Even if it weren’t a trip to Disneyland I’d be so excited to be able to spend the entire week with Jeremy and the kids with no homework, or work hanging over our heads.

Here are a few pics from April that I haven’t had time to put on here from some of our moments that matter the most.

Deeds actually LET Gwen sit with him on the ride.

Captured moment with Deeds talking to Magpie.

Daddy helping the kids dress up at the museum.

The kids laughing and actually playing together!

I love the constant reminder my children give me to stop and smell the flowers.

Unbridled joy at conquering the toy at the garden.

Deeds teaching Gwen how to smell the tulips. It had me almost in tears it was so sweet.


Nightmares

The past couple of weeks I find myself being woken up with fear gripping every bit of me.  At first when I would waken I couldn’t remember what would have me so terrified but the past few times it’s become more clear.

I’m having nightmares about Deeds burn.

It’s been almost exactly a year since it happened and while the nightmares are exaggerating it and adding new terrifying elements I’m realizing now how hard it was as a mother to have him go through that and have to watch him be in so much pain and subject him to the cleanings.

For those of you that might not know what I’m talking about here is a short version of the story.

On Deeds 3rd birthday he hadn’t eaten much so when he asked for some maccaroni and cheese Jeremy willingly went upstairs with him to make some.  A short while later I heard Jeremy frantically yelling for me.  I went upstairs and saw Deeds screaming with hot water and maccaroni noodles everywhere.

He was standing next to his dad watching the food cook.  When Jeremy told him it was time to go sit down Deeds shirt caught the spoon on the pot and it pulled the entire contents of boiling water and noodles onto his head.

We rushed him into the bathroom and started using room temp water to ease the skin (thank goodness for that first aid course) but we got to his face and hands last since his abdomen and legs looked the worse at first.  A long night at two hospitals involving an emergency ambulance transfer later our little guy ended up at the burn unit at the University of Utah.  He woke up a few days later at home screaming with his eyes swollen shut.  We had chosen to have him discharged when the doctors explained that with his special needs and resistance to the unfamiliar that he might heal better at home.  If only we had known how bad the next couple days would be.  Granted they were right, he was NOT sleeping or eating anything at the hospital, but the stress it put on Jeremy and I to take care of him has obviously taken its toll on me, even a year later.  It was then and literally is now one of our worst nightmares.

With the burn we would have to pin him down two times a day and practically scrub the wounded areas.  I pray to never hear my son screaming like that again… and we had to do it twice a day for weeks.  It was horrifying when a full week after the burn we went to buzz his hair to make the cleaning easier and found an entire area of his scalp that hadn’t been treated that was burnt (and still doesn’t grow hair the same because of scar tissue).   We were all covered in bruises and emotionally battered by the time things started to heal but it was all worth it when Deeds has healed so well thanks to the cleanings.

Here are a few before and after shots.  The first two of the burn were from when his eyes were swollen shut before he could really open them again.

The healing really is amazing considering how bad it was.  You would never know.  Sometimes when he gets upset he will get bright red on only the side of his face that was burnt but we have been diligent about keeping the fresh skin out of the sun this past year.  I look at him often and think about what a miracle he is.  In so many ways we are blessed to see miracles happen when we feel like we have hit bottom.

I don’t know why I am all of a sudden having these nightmares.  I guess it is to serve as a reminder to me as we approach the first anniversary of his burn that even the most cautious parents have bad things happen.  The handle was turned, daddy was standing next to him…bad things still happened.

As a mother I wish I could have taken away all his pain.  I wish he hadn’t had to go through that.  While he still mentions it from time to time I pray it doesn’t haunt him like it does me.

Hopefully these nightmares will pass, I’m hoping that getting all this off my chest will help them to go away.

Love your babies.  Hug them if they will let you.  ALWAYS tell them you love them.  They grow so fast and it’s the good memories you hope they take with them.  Long after I’m gone I hope Deeds doesn’t look back and remember the pain from us taking care of him.  I hope he remembers all the things we did that made him happy.  I hope he remembers how much I love him.  How much his daddy and I strive daily to help him grow and reach his full potential.  How much he means to us.  I guess that’s why I’m trying to make sure his Angry Birds birthday is a wonderful one.  It will be good replace the memory of last year’s birthday, if not for him…. than for his dad and I.

We love you Jacob Diedrich.  You will always be our miracle boy.

 

 


Sometimes there is Silence

I am sorry for those of you that were getting used to my daily blog posts for Deeds.  We are being blessed with a lot of challenges and hard trials right now and rather than blog about them and cry I have kept quiet.  Sometimes silence is the best option.  Last post was such a positive one I thought I’d leave it up for a while.  I got an email from someone who reads the blog asking how school was going for Deeds so I thought I’d better suck it up and update for you all.

Deeds loved his first week in school.  We went for a parent training last night and got to meet his teacher and some of the aids in the class and they all adore him.  There is something about our little man.  He just melts people’s hearts.  I am so blessed to be his mom and I know his dad feels the same way.  Does it hurt when mommy could sure use a hug and he yells at me, yes… but I adore him all the same for the times he will let me hug him.

He is adjusting to no more naps and being gone all day fairly well.  Tonight was the first big meltdown we have had this week and it lasted quite a while.  At one point he was screaming so loud even Gwen was crying because it scared her and Magpie wouldn’t go near him.  I’m sure it was hurting her ears.  I know it was killing mine.  Jeremy and I traded off taking care of him and Gwen.  Finally after trying everything (including having to hold him down for a second because I was afraid he would hurt himself) I told him we could color in a new alphabet book I had for him if he calmed down.  It worked like MAGIC.  The book is one I got for the airplane that he had no interest in at the time.  It is just a preschool workbook and tonight we sat together and worked in it for two hours!  It’s now back away waiting for the next time we need to stop a meltdown.

I am so happy he is going to this school.  The opportunity for us to go learn last night and him to be with such wonderful people when he isn’t with us is a tremendous blessing right now and sometimes you need to look for and cherish blessings.

To every thing there is a season, and a time to every purpose under the heaven…a time to rend, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time of war, and a time of peace. ~Ecclesiastes

 


Thank you from this mama

Every once in a while I get an overwhelming need to tell everyone who helped make it possible for us to get Magpie thank you.  As I sit and type this Deeds is watching a movie while laying his head on his best pal Magpie.  She is truly a miracle for him and it chokes me up every time I see him bond so quickly with her.  It makes me a little jealous sometimes because the bond with me, his own mother, took 3 years to build but I am just so excited he is growing so much.

With the recent news story Fox 13 did we have gotten a lot of people stopping us in public and with one exception everyone has been very supportive and caring.  Deeds really is an amazing kid and I’m blessed to be his mom.  He is our little miracle boy and I cry often when I ponder how lucky we are to have him and his sister in our lives.

Magpie has truly become a part of our family and I am so thankful to everyone who blogged, tweeted, donated, shared his story and spread his story last year to help us with the fundraising.  Thank you for the many of you that rallied around us during his burn ten months ago.  You cried with us and helped us through that difficult time.  We will always carry all of you with us in our hearts and every time we look at this four-legged wonder.

For all those of you that may be new to our crazy piece of the universe.  Welcome, we know you’ll love our little man and his black doggie as much as we do.


Adjustments

Today has been a busy day, and yet we never left the house once.  The kids and I are still fighting off the cold we caught while in Ohio and add in a 2 hour time change and daylight savings we all seem a bit off.

We have a ball just for Deeds when he plays with Magpie.  It is a way to help them bond.  This morning when we tried to get him to play with her Deeds wanted nothing to do with it.  We decided on setting a timer for 10 minutes.  I went into his room and shut the door with Magpie and the ball.  I sat and watched him giggle and play with her for a log time.  The timer went off and he kept telling me to “set it again”.

Our best hopes that Daisy, the dog we already have, and Magpie would become best friends are just not working out yet.  Daisy is thrown off with us being gone so long and NOT a fan of Magpie at all.  It’s new territory for us since even when we dog sit for other people she’s always been okay.  I’m really hoping that in a few weeks things with them will settle down.  Magpie just wants to play with her so badly but Daisy will apparently take some time warming up to the idea.

Gwen is THRILLED to be home with Daisy.  She has followed her around all day hugging her and calling her name.

Tonight we worked on obedience with Magpie and Daisy wanted treats too so we tried some things with her as well.  Apparently you can teach an old dog new tricks.  Tomorrow we plan on getting Magpie used to our area by heading to the store and running a few errands.  I’ll be honest, I’m nervous and hoping the public will take to her well.  I haven’t run into many service dogs at all in our area, really only twice that I can think of.  I’m guessing it’s going to take a little getting used to for everyone.


Internet

Today we finally unpacked all the rooms and got internet set up, so I have a quick second to write a post for Deeds.

Moving is rough, for anyone moving is a challenge.  Moving with a child who is a creature of habit is a nightmare.  We only moved about 10 minutes from where we were living before.  A couple of weeks before the move we started to take Deeds over and get him used to the new place (a blessing that we know our landlord well).  He LOVED moving day, I thought all the chaos and other kids would drive him bonkers but he seemed to really enjoy it all.

Deeds this past weekend

 

We moved his room first, but that first night here was still a disaster.  I couldn’t find his “kitty cat” light that he uses as a night-light, so he refused to go to sleep.  Once we finally got him to fall asleep, a train came by and woke him up.  We aren’t that close to the train tracks, but where the house is we can hear them echo from pretty far away.  I think we got about 2 hours of sleep that first night.

Night number two it took a long time to get him to go down again.  He kept telling Jeremy he was scared of the noises.  His other room was a quiet one in the basement so I’m guessing he doesn’t like all the new sounds.  Then he figured out how to get out of his bedroom.  When that first train went by he was in our room, and stayed there most of the night.  He doesn’t sleep well so neither did Daddy and I.  Finally last night he went to bed late but stayed in bed and we all got to sleep through the entire night!  It was spectacular and much-needed with all the stress of unpacking and moving.

We have a ton of things for a yard sale now that the move is over, and I think we’ll put the money towards Deeds custodial account.  I never was able to sell all those Krispy Kreme cards and since they had to be paid for first the garage sale should cover the difference we lost.

 

 


Little Big Planet

A few months ago Bobbie and I decided that it would be ok to show JD how to play the PlayStation. We figured he was coordinated enough to play Little Big Planet. It is a fairly basic game in concept but he is not able to do all the combination. It took him a little while to use the left joystick with his left hand and use the ‘x’ button to jump with his right hand. Before he would use one hand for both actions.

He can now do that but the few other combos he still can not do on his own. So, he usually asks to play the game, but that entails myself playing for him while he watches and directs me in sometimes a frantic manner by yelling, “GO BACK!” or “GET THE COINS!!” The best part of the game is when he complete a level to what JD calls the giant tv — which is a screen within the game that shows your score after each level — and he takes the control from me and say “dance little man dance.” Since the controller is motion sensitive he can tilt it and the character moves as JD use the joystick to make the character bounce around.

He can do a few of the really basic levels so those get set up if I have to step away for a moment. Oh also, Bobbie gets out of this activity by saying that only dad can play the game, but it works so that he does not play it all the time.

This morning we did play before school for about 20 minutes, but before that happened he woke up and started talking about getting the key and unlocking the doors and to get the cats out. It took me a few minutes to realize he was referring to one of the levels we have played only once and I believe it was on Sunday, what a memory.

The latest issue we had with JD was when he was with Bobbie at Costco and he got away for 20 minutes, so we are still counting down until we can get the dog for him. Since JD has such a great memory we got the idea to take him to the airport the week before to get used to waiting inline, meeting the front desk agents, seeing security and the bag claim area. We are hoping that will help him be calm when he goes to the airport and that he will ask to go back.

We also are so close to reaching our goal and we thank everyone for that, but if you are feeling generous you can still help us out by just donating on the site or do some shopping on Amazon through this link here and we get a small percentage of that.


We are stylin

We received a blogging award.  Deeds was quite excited when I told him till he realized there was no candy involved.   Apparently I first have to tell you seven things about me and then I have to give this pretty award to ten other bloggers. I hope I can think of 10 other bloggers to give it to that haven’t gotten it yet.  I can’t think of 10 things about Deeds that I haven’t already blogged about so I guess you get to find out about Mommy a little.  Make sure you read the rules at the bottom!!

1. I worked for Walt Disney World for 5 years.  I still cry at the opening of almost every Disney movie when they show the castle.

2. I have 14 nieces and nephews, and 3 siblings.

3. I spent 4 months on bed rest with Gwendolyn.  Not as much fun as it might sound…I PROMISE!

4. I went into heart failure when I was pregnant with Deeds and have never been able to get the function back to normal.  Gwen was a big surprise, doctors said NO MORE, Gwen said WHATEVER!  :-)

5. I have lived in California, North Carolina, Florida and now we live in Utah.

6. I am a Massage Therapist at a nice spa in Park City 2 days a week.

7. Jeremy and I met online!  My sister and sister-in-law picked him out and sent him the first message or two because I refused to date after a nasty divorce I had many years ago.  They picked a winner.  We’ve been married for 5 years now.

So here are the rules:

1.You have to thank and link back to the person who sent you this award.

Thank you Autism Super Mom (you really are super)

2. Share seven things about yourself

3. Share this award with 10 other people and let them know.

Here is who I picked.  I know there isn’t 10, but I couldn’t think of 10 people who haven’t gotten the award already!

Katy

Natasha (I miss you so much)
Trish

 


That’s a first

Tonight I kept thinking to myself.  Wow, that’s a first.  Here is the rundown.

  • 6:00pm Gwen shoved half a purple fruit loop up her nose.
  • 6:15pm I think I got it all out of her little 16 month old nostril.
  • 7:00pm bathtime (down hill from here).
  • 7:05pm purple boogers from fruit loop remnants I missed.
  • 7:06pm Deeds starts freaking out about said boogers.
  • 7:08pm Deeds continues to freak out so I attempt to calm him down which sends him into a full-blown meltdown while still IN the bathtub (NIGHTMARE)
  • 7:10pm The entire bathroom is soaked, including the new roll of toilet paper I just replaced.
  • 7:11pm Mommy is drenched from head to toe and now Gwen is screaming too.
  • 7:15pm I decide enough is enough and go to grab Deeds out of the tub just in time to have Gwen throw up all over us. Deeds freaks out even more and hits his head on the tub.  I didn’t think he could yell any louder but I was wrong.
  • 7:45pm we finally get everyone cleaned off and washed up.  Tears are now flowing from all parties involved.
  • 8:00pm BED TIME!  Better late than never.

Good news, we all survived.  Better news, kids are now asleep.  Best news, I have a good book I am now going to get lost in.


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