Category Archives: Life

Leaps and Bounds

As I sat last month and watched JD perform with his kindergarten class I couldn’t help but think once again about how much he has progressed.  I filmed his little show, zoomed in on his fidgeting and spinning, thinking it would be so fun to show all of you how well he is doing.  When I came home to put it online I somehow accidentally deleted all the video and was so darn upset about it I didn’t post anything at all.

With my nursing program starting at the university it hasn’t left much time for blogging.  I really do like to spend all my extra time with the kids.  Lets face it, if I don’t even do the laundry or clean house when I’m in school then things like blogging are really not going to get done.  I decided however that since we are halfway through the school year and our little guy turns 6 next week it is time to dust off the old blog page and post a quick update.  I can’t believe it’s almost been 3 years since that horrible burn but oh baby how we’ve grown since then.

Here’s the skinny on Deeds and Magpie:

Deeds is now as tall as some of his cousins were when they were almost 8 years old.  The sweet boy is really a gentle giant just like his daddy and I’m sure will one day tower over his mommy (and it’s not like I’m a small fry).  He has been liking LOVING kindergarten and academically he’s doing amazing.  A far cry from being told he probably wouldn’t be able to speak, now we can’t get him to stop and we love it.  He is an amazing big brother and while he still has some very autistic moments that little sister doesn’t understand they get along quite well and love to play games together.

Our latest bit of fun combines my love of Disney and his love of video games.  They got the Disney Infinity play set recently and Deeds loves to ask me to play with him.  It’s so fun to connect with him on a new and unexpected level.  It is really something I look forward too.  Even on days like today when I could only play for 10 minutes with him.

Magpie is still feisty as ever and such a good girl.   Since Deeds has been seizure free for a couple of months I think she was getting bored.  That is until I did respite for a family who had a special needs son and we had him at our house for a few days over the holiday break.  Magpie LOVED IT!  She followed his wheelchair around, responded to his seizures and was on her best service dog behavior the entire time.  It was fun to see her snap back into things.  She is quite the fixture at church and everyone is so used to her now she gets told hello as much as the rest of us do.  Lately we have seen quite a few dogs in public places that aren’t service dogs and it has caught her off guard when another dog barks in a store or something but she’s such a pro at this point it’s usually no biggie.  Sure she still has her teenager days, but most of the time she is her spunky self.

I hope it isn’t as long between updates next time, but with the fun of Nursing school I’ve learned that my life isn’t always my own right now.  Hope you enjoy the pic’s and know we still love and think of all of you often!  You helped our guy and changed his life, it’s something that won’t ever be forgotten by us.

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Going for a spin

A few years ago we installed some hanging rings, cocoon swing and a mini trampoline in our family room.  We saw a dramatic improvement in the meltdowns when we gave Deeds a physical outlet to utilize at home.  When we moved into our current home two years ago we decided to reclaim the family room and install the equipment in Deeds room.  The trampoline still lived in our family room for quite some time but I’ve never messed with the rings or swing since we moved in.

Yesterday when the kids were playing on the rings I noticed that they really needed to be raised quite a bit.  Thankfully they are adjustable, I’d just never thought to do it.  Funny how much kids grow.  😉

Today I fixed them and they haven’t left Deeds room since.  The laughter coming from their room made me go investigate and this is what I found.  Love these two.

Gwen Spin for Blog

JD swing for blog

I love how during the video of Deeds he stops to talk to Gwen after she says that he is strong like Hercules and says, “Hercules is stronger, I can’t carry the things he can carry.”

 

 

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