He RADIATES

 It's hard to put into words how grateful we are to see Jett reach his 2nd birthday...and reach it BOLDLY, might we add!  He is one healthy and strong boy right now.  This past year has been so much fun with him. We can actually say that now and MEAN what we say!  He really is so much fun. Our first year with Jett was scary and full of hospital visits and the unknown.  We weren't sure he would even make it past his first birthday.  In fact, at times, we prayed that Heavenly Father would do what He needed to do to ensure Jett's comfort...whatever that may be.  However, Jett's strong will to live took over and he stayed with us!  The second year started out rough for a bit (with sickness and such), but from March until now, Jett has been the happiest and healthiest boy!  We couldn't be more happy with our little guy.

Daddy was able to come to Jett's PT appointment last week.

Jett cuddling with Grandma Sherrie

Cody and I talk a lot about what exactly it is about Jett that draws people to him.  There's something about him that just melts your heart and makes you smile.  For the longest time, we couldn't figure out what it was and then, just last night, I was reading a passage out of a book and the answer became very clear.  Currently, I'm reading a book that my mother-in-law gave me called One Tattered Angel by Blaine M. Yorgason.  It is a true story about a family that adopts a little girl with severe disabilities.  She was born missing a large portion of her brain (much like Jett) and was expected to only live a few months.  Well, I'm not finished with the book yet, but I do know that the little girl lived until she was 8-years-old and greatly impacted the lives of those around her.  Below is the passage that I read last night.  It starts out with the father speaking to his wife about their daughter, Charity.

Passage from One Tattered Angel:

"That little girl touches me in ways I have never been touched, " I told Kathy one day. "I absolutely love and adore her, but I'm also in awe of her; I cry with joy when she smiles at me; I can hardly keep myself from smothering her with hugs and kisses; I find myself constantly singing to her; I feel guilty when I'm around her because I don't know how to care for her the way you do, and yet I know with every fiber of my being that she loves me unconditionally; and I don't think I will ever in this life stop wondering who she really is.  Yet if I were asked what Charity does to affect me like that, I don't know if I could give a sensible answer."  (The last statement is exactly what Cody and I talk about all the time!)

Continuing on:

"Sure you could," Kathy responded.  "She may never talk or sing or run or jump or play like other little girls, which are the things we always talk about when we describe our children, but she does do something.  She RADIATES.  She is like a lamp with a bulb that seems to grow brighter the older she gets, radiating love and joy and peace to any who come near and want to feel it."
                                                                                                   -Blaine M. Yorgason

I couldn't have said it more perfectly myself.  Jett isn't able to do much physically, but what he does for us emotionally and mentally far outweighs any of that.  He simply RADIATES.  When I hold him, I literally feel all of the stresses in my life melt away...and he IS my biggest stress! I don't get it.  I really don't, but I'm grateful for the blessing that he is in my life.

Happy 2nd Birthday to our little Fighter Jett!!  Keep fighting the good fight little man.  We love you so much and look forward to many more years with you.

One of Jett's nurses did this fun Christmas craft with him.  Jett's hands and feet were painted and stamped onto the canvas to create the pictures.  Too cute!  It immediately made it's place on our wall.

Boseman Family Reunion Nebraska Style

Our family must really, really like us.  Do you want to know why?  They all agreed upon Nebraska (aka Omaha) as our family vacation destination this year.  They could have gone to Hawaii.  They could have gone to Disney World.  Nope. They really wanted to come to Nebraska instead annnnndddd they all wanted to drive over 16 hours to get here.  Okay, okay…maybe they didn't necessarily want to come to Nebraska, but awhile back, Cody and I made the decision that we're not putting Jett on a plane anytime soon.  He gets sick way too easily.  Usually we're not the over-cautious parent, but when a simple sickness can land your kid in the hospital, you learn to take some precautions!  Anyway, Cody's family is amazing and didn't want to leave us out so they packed up their cars and buses (if you're Peter) and headed out to Nebraska!

Cody and I called it our "stay"cation.  We were able to feel like we were on vacation, yet we could come home each night and hand Jett off to a nurse.  Cody's parents rented a cabin that is located about 15 minutes north of Omaha.  It was surrounded by horses and a small lake. Who knew that Nebraska had such beautiful countryside?  Since moving to Omaha, I was always looking for that picturesque image in my mind of what Nebraska is supposed to be.  You know…windmills, cornfields, horses, cows, tractors, crop dusting airplanes…that kind of thing.  Well, if you've ever been to Omaha, it doesn't really offer much…just a bunch of freeways and trains.  However, travel 15 minutes north of Omaha and you are in beautiful cornfield country.

We had a blast with Cody's family.  Jett loved hanging out with all of his cousins and was able to spend some quality time with Grandma, Grandpa, Aunt Amy, and Uncle Peter.  They showered him with cuddles and kisses.  He even got to participate in the "golden ticket" challenges that Cody and Amy planned for the kids.  Prepare for a picture overload below.

Jett helped WIN a golden ticket challenge…go Jett!

Oh ya know…just working on a BOONDOGGLE keychain.  Back in my day, I was the queen of boondoggle.  You can pretty much call me Deb (from Napolean Dynamite)

At the Air and Space Museum, Jett looked like such a big boy in a real stroller.  He loved looking at all of the planes (obviously)…well, shoot, he IS sleeping in this picture.

I found my next winter coat at the Air and Space Museum.  How do you like it?

Boating DAY!  Even Grandma got a turn on the tube.

Little Henry Wyatt (our nephew) was not a fan of the tube.  He shrieked in terror the entire time, yet when he came back in the boat, he screamed out, "I did it mommy, I did it!"

Jett loved the water and it was a good thing that he did.  It was a HOT day!

Our niece, Addie wakeboarding for the first time.  She's already better than I am.

My older nieces (and sister-in-law, Amy) gave me this cute hat for my birthday!

Jett and Daddy doing their "A-Okay" sign

Jett and I roasting, literally roasting, on the beach.  The sun kept moving so we had to keep moving spots.  

The entire Boseman clan (minus Chad's family) sporting our awesome reunion shirts that Cody made.

We loved hanging out at the ranch…Kusaba especially.  He would leave and go on his own adventures and then come back hours later with horse poop all over him.  He was in heaven.

We LOVE our Boseman family! Come on back now, ya hear?

Kissing Booth

I am one broke mama this Valentine's Day...

but those kisses are worth it!

XOXO

A Special Connection

Without going into much detail, there could have been MANY reasons for Cody and I to skip church today. Everything was going against us, it seemed, but we rushed to get there regardless.  We arrived just in time for the Christmas program to begin.  The choir began to sing and the spirit immediately filled the room.

Jett loves music.  At first, he was quite restless, but once the music began, he became still and content.  Cody draped Jett over his shoulder as we listened to the beautiful music and he drifted off into sleep.  As the choir began to sing, "Away In A Manger", I felt a tap on my shoulder.  I turned around to find an older woman standing there.  She was about 50 years old and had Down Syndrome. She was frail and you could tell that she was recovering from cancer treatment.  The woman quietly said, "Oh you have a special baby" as she touched Jett's little head with shaky hands.  "He's so special," she repeatedly said.  I put out Jett's hand for her to hold and she stood there through the entire song stroking his fingers.

Cody and I looked at each other in amazement and we couldn't help but smile.   Reason being...we have some good friends who, too, have a child with special needs.  About a year ago, they had this SAME exact experience at church.  What an honor to have seen that sweet exchange between two of Heavenly Father's choicest children.  I think they know a lot more than we do about how this world works; or, at least, how it should work.  If we only knew what they know, this world would be a different place.

Needless to say, I had to leave the meeting for a minute because I was so overwhelmed with emotion.  What a special gift we received today.  I am so grateful for that woman and for the unconditional love she displayed.

Jett's SWAG

We are constantly amazed and grateful for the generosity and thoughtfulness of others.

Jett is one lucky guy.  He receives packages in the mail on a weekly basis from wonderful friends around the world (but mostly Utah...whoop whoop!)  In these pictures above, Jett is decked out in some running gear from Run Disney, a koala bear and boomerang from Australia, a cute football outfit, and some autographed pictures from all of the Disney characters.  Seriously? So cool. 

I have always known that there are good people in the world, but since having Jett and finding out his diagnosis, this level of "good" people has reached a whole new level.  I am extremely humbled by this opportunity to raise a child with special needs.  At times, it is difficult, but never once have I thought about giving up.  First off, I CAN'T, and second off, there are people in my life (and Cody's) who continually show their support in numerous ways.  

We feel YOUR love and we feel God's love constantly.

Thank you for always thinking of us and Jett! 

Coincidence? I think not.

Do you think it's any coincidence that BOTH sets of grandparents booked a trip out to Omaha 

after seeing this video?

Yeah, me either.

 

Jett is getting his two bottom teeth AND his top tooth (which I just barely noticed). 

 He has been one ornery camper, but you can't tell in this video. 

Cute, little stinker!

On a side note:  Yes, BOTH sets of grandparents are coming out for Jett's first birthday in December. 

We are so excited!!

Interaction

After Jett's bath tonight I put him on my bed and lay down next to him.  He was giving me some cute smiles after I would kiss his chin.  It was so nice to see him relaxed and alert. Those two things don't usually coincide...he's either relaxed and ASLEEP or alert and MAD.

After some time doing this, I went to the other side of the bed and called his name to see what he would do.  It took a couple seconds, but he slowly turned his head toward me like, "Yes, mommy?"

Cutest thing ever.  I may have cried.

Sometimes I wonder if he knows who we are, but tonight, he told me himself. 

Special Kiddos

The chance of having a child with Pontocerebellar Hypoplasia is one in a million, if not more.  Thanks to technology, I have been incredibly lucky to find other parents around the world who know A LOT about the condition.  They, too, have children who were born with PCH.

There are maybe 50 children (just a guess) around the world who suffer from this heartbreaking condition.  Through our special Facebook page, we, as parents, have become close friends.  At a time when we could feel so alone in the world, we have an outlet where we can vent, ask questions, and share stories about our special children.  This support system is priceless because they KNOW what you are going through and can empathize on a deeper level.

I am a big fan of Jett's doctors.  However, PCH is such a rare condition, that many doctors haven't heard of it.  They have to do a fair amount of research to be able to prescribe the right medications and such.  When I have any questions related to the condition, rather than go to the doctors, I go to my Facebook friends first.  Their advice is so helpful.  I don't know what I would do without them!  Even the doctors ask ME a lot of questions about the condition so that they can learn more about it.  

We are all learning and growing together.

With the permission of the parents, I wanted to share some pictures with you of these beautiful children.  A couple of them have passed on, but many are still with us today.  Some live in the United States and others live in Europe and Australia.  Severity of the condition can differ for each child.  Some experience seizures, others do not.  The oldest child with PCH is 15 years old right now (not pictured), but the average life span of a PCH child is around 4 or 5 years of age.  

It can be a sad world to live in knowing that you are going to outlive your child.  However, through this support system, we are able to get through life's struggles together.  

I have a true love for these children and I feel like I know them.  They are such strong spirits and put up a courageous fight every day of their lives.  

Enjoy!!

We've come a long way

I was just deleting some stuff on my computer and ran into some old pictures.  Although we still aren't in the clear, have many hurdles yet to come, and still have many daily reality checks, I realized for the first time how much our little Jett really has grown.

He hasn't put on much weight in 9 months of life but who cares (we were so concerned with this for a long time) He has accomplished so much in his inspired short life so far. Here is what he has accomplished so far:

-He dealt with us as 1st time parents, and not knowing his specific needs the first 8 weeks of life before we knew that he had some special things that we needed to do for him.
-Against all odds (PCH and cleft lip/palate) he learned how to eat out of a bottle for the first 2 months of life (he was never supposed to be able to do this)
-He dealt with a nasal feeding tube and an oxygen tube for 2.5 months
-He has taught doctors, nurses, techs, parents and pretty much anyone that encounters him, that size is NO indicator of strength… He is one strong little guy
-He is the first Boseman to EVER have an 8 pack, and the youngest Boseman to grow a mustache (loved his stache)
-He experienced his first of many surgeries by having his cleft lip repaired by an amazing surgeon (Dr. Morales) (although the lip repair was incredible, this is what ultimately ruined his mustache...)
-2 weeks after his 1st surgery he had his feeding tube installed into his tummy
-He made his 1st cross country move, and had the opportunity to go on his first airplane ride (thanks to some amazing friends)
-He endured a doctor making a stupid mistake, so he had his tummy button installed 2 times instead of 1.
-He has doubled in size and now weighs in at 13 pounds
-He has traveled the world (see his blog for all those details)
-He visited with his buddy Glenn Beck
-He has inspired many people world wide.  We have heard many of the inspiring stories but I know there are many I haven't heard. Secondarily to this, we have learned that there are really some incredible people out there that are filled with compassion.
-He has taught us about the world of raising a special needs child, and introduced us to some equally amazing angel babies.
-He has solidified the fact that prayers are heard and answered

-He has grown, fought, inspired, and learned with such an amazing little attitude over the last few months.  We are so proud of him.

Here are a couple pics I just found from when he was younger:

And here are some more recent ones.  Growing up:

If you have any more accomplishments that I didn't cover, Please feel free to remind us of them!  Thanks

Lovin' on Mr. Caterpillar

Jett has been lovin' on this cute caterpillar toy lately (thank you, Devin!).  This is the first time EVER that he will grab something (well, we have to place it in his arms) and hold it close to him.  He likes the fuzziness touching his face and likes to give it "kisses".  We spent the night at the ER on Saturday night and so Jett has been needing the extra cuddling.  By the way, I hate ear infections...especially double ear infections, and I'm pretty sure that Jett does too.

On a better note, our private duty nursing has begun!  We are so grateful to have qualified for nursing in our home.  From here on out, a nurse will come to our home every night from 11 p.m. to 7 a.m. so that Cody and I can get some good sleep. This will happen Sunday through Thursday.  The word that comes to my mind...MAGICAL and words can't even describe how excited I was to go to sleep last night.  Cody was trying to talk to me and I was like, "Shhhh...you are wasting my sleep time." Jett had a pretty good night and only woke up once for the nurse.  She gave him his middle-of-the-night meds and rocked him back to sleep.  I am so incredibly grateful that he is being cared for so closely throughout the night.  Sometimes I worry that even though his video monitor is right next to me while I sleep, that I won't hear him.  This definitely gives me peace of mind and will help me care for him better during the day.

This is kind of a random thought, but even though we are experiencing one of the biggest challenges we will ever face, we have been blessed to meet some really wonderful and genuine people along the way.  Not only are we surrounded by amazing friends and neighbors, but the doctors and nurses have also become our close friends.  You can tell that they truly care for Jett and want the best for him and us.