Recovering at home

Yes, we are home now, antibiotics are doing it's thing, and Hudson is resting comfortably this morning in his own bed. When awake he is coughing up a ton of junk, all that stuff that has been sitting in his lungs. So grateful for his strong cough....Lots and lots of suctioning in the days ahead.
Thank to all who have been praying for him.

Deb

One sick kid

For those of you not connected to me on Facebook...Hudson has been admitted into the hospital today. He has pneumonia and partial collapsed lung with his heart being pushed over.

Prayers are appreciated.

In a month...

Wow...a month has passed since I have updated. I am sorry to those who actually read my blog and have wondered how Hudson is doing...I really didn't mean to leave you hanging ( and I say that literally to the one person who may actually stop here and read.... as I am not even sure if anyone reads this blog anymore!)
Hudson is holding steady...his last hospitalization was on the heels of my mom's 4 week vacation on a cruise around the world....okay, not around the world, although it feels like she has been gone that long, but an amazing vacation she so incredibly deserves! Hudson just knew there was no margin for error once Nana was on the high seas, so he made sure to get his hospitalization in prior! Way to go Hudson! He got all the good juices he needed to keep him going while she has been gone....today, he is his regular gunky self, some days are better than others. This has actually been a pretty great week for him. Minimal seizures, sleeping well, not a ton of suctioning....praise God for a good week! We deserve them and will gladly take them!!! I should rephrase...HUDSON deserves them...he deserves far beyond "good" days....but we take what we we can get, and praise Jesus for the "good" ones.

I had a ton of anxiety with my mom heading out of town. I rely so much on her.
Honestly? It completely sucks to be my age and admit you need your mom....but I do. She takes over with Hunter and Hailey when Hudson needs medical attention, she is my best friend, she is my wine drinking partner, she is my confidant, she makes me laugh and sometimes frustrates me, BUT I adore her...and I right now I really miss her. I have some truly great friends....I am so blessed. Friends that knew it would be rough on me with my mom gone...after all, the past 10 months my mom and Fred have not left my side, they have been there at every moment...as I go through this process of trying to heal, and come to grips with all that has happened....they have never left my side. I encouraged them to go on this amazing cruise out of Hawaii, ending in Australia. I reassured them I would be just fine, the kids were great, Hudson would do well....and we are. In the meantime, those wonderful friends I mentioned have stepped in and filled my weekends. Girls nights out, dinner at friends, pumpkin carving and pizza night....they just let me know I am not alone. I am blessed.

What I have found, is when I stop worrying and let God do the work in my life...the work to figure out the small details that sometimes I just don't want to look at, He shows up and shows me He is working it all out for my good. I am grateful to know this. To know it is not all up to me.

So, all in all, things are good. The kids are doing really well in school...they have the absolute BEST teachers. Even the best "past" teachers....I got an email from Hunter's teacher from last year. Get this....he wanted to know if he could just spend some time with Hunter, as Hunter holds a special place in his heart and so they will hang out after school one day a week....shooting hoops, hitting the tennis ball, playing games, working on homework, etc. Like I said....God just shows up.
I am so proud of my kids...they have been through alot....they both are straight A students, and continue to give their all in everything they do. They are so faithful, and loving...I am so proud of who they are in spite of all our trials. I pray for them constantly...I rely on God as a father to my kids...and He shows up....He is a dad that is always there for his kids, he doesn't disappoint...
 It is beautiful.

I am doing pretty okay myself. I have good and not so good days, but God shows up for me too....after all, I am one of His kids too! The week my mom left, Hudson's caretaker became my full time caretaker. She was only giving me 1-3 hours a couple days a week. The week my mom left her full time family of 4 years parted ways with her....their loss has been my gain. She is here pretty much 5 days a week, either from 10-3, or 9-2. At first I felt guilty spending so much time away from little Hudson, but I know in 5 years I have been there 24/7 with no help. I have always put  myself on the back burner and taken care of everyone elses needs. Not anymore. I workout a minimum of 5 days a week. Hardcore cardio....where I am dripping and disgusting...it feels AMAZING! I throw my head phones on and listen to worship music or a sermon I missed and sweat! I feel the best I have felt in years....I am taking care of ME! It is truly the best therapy....good for the mind, body and soul. I started this process back in April with the help of my mom and Christina. I was worried with my mom being gone, my gym days would be far and few between....having her full time once my mom left was Gods way of once again taking care of those fine details.

It is all about Gods great providence....
life happens, tragedy happens, sadness ensues, the unexpected swallows you whole.....where do you go? Who do you turn to?
I have allowed my trials and tragedies to deepen my faith, to rely on God, to trust He who is in control...I am a work in progress...I don't always do it well or right....but I have a great God who makes it all well and right, even through all my screw ups! I am blessed....HE just shows up for me.


I leave you with our trip to the pumpkin patch last weekend, in our efforts to pick the perfect pumpkin!

The season isn't here.....

And we are in the E.R.
Hudson has some type of viral infection but being admitted for what it is doing to him metabolically .
High ammonia levels, high heart rate, dehydrated, horrific gripping seizures.
I think he is all about making a statement during Mitochondrial Awareness Week.....

Facing my Fears means Trusting

I have had my share of fear facing in one life time.
As a parent, I can't think of anything worse than finding out your child is not only sick, but suffers at the hands of an incurable disease. It is the most helpless feeling not being able to help your child, communicate with your child, mend what ails them....and honestly, with time it doesn't get any easier, it is just a painful reality daily.

 The more I want to and tend to hold on to Hudson with white knuckles, is when I realize I really have to lay him at the feet of Jesus... over and over again....
I must trust He who created him...and pray Hudson's time here on earth is carved out longer than this disease allows him to live.  That had not been an easy place to come to and I am not sure I am fully there....but the fear of having a sick child and the fear of outliving your child, can be paralyzing. I choose not to be paralyzed with fear...I think for much of Hudson's time here so far I have been numb with fear....fear of how I can care for him as he grows, fear of what pains him, fear of loosing him one day...fear creeps in often, and the enemy can and will pounce on vulnerability....
I choose Jesus, not fear.

So much of Hudson's life is out of my control....
I choose to replace my fears with trust...
I am going to trust God has a plan with Hudson, I am going to trust that His love for Hudson surpasses all the love I have for him, I choose to trust in the plan God has for today and will  not worry about tomorrow.
Many days I have to repeat these thoughts in my head...because it is so easy to find myself worried, and blanketed in fear. I have to remind myself how big God is and how perfect His plan is and how imperfect mine are.

The state of WA has a huge Whooping Cough outbreak. I am not sure if other states are experiencing what we are, but it is bad here. I probably wouldn't be paying much attention to the epidemic if it weren't for Hudson. It has been seeded in the back of my head for some time now...none of my kids are vaccinated (worry) What happens if Hudson gets this? (worry) Do I need to vaccinate? (worry)

More worry...whooping cough has hit 2 of my best friends...
I found out a friend of mine who lives in Eastern WA, who was here for a visit, both her kids were confirmed whooping cough cases at the beginning of summer. Then just a week ago my neighbor and good friend got it....now she thinks her husband may have it. I know it is hard on a healthy person to endure....what happens to Hudson if he gets it????(worry, worry, worry)

So, the nagging at me lead me to call the mito nurse. She confirmed it is imperative Hudson, Hailey, and Hunter get the vaccination. Anybody who is in contact with him should be newly vaccinated. There is the belief that those who were vaccinated years ago, the vaccine may not have been strong enough, which is why it is spreading.
Yesterday we all got vaccinated, my mom and Kate did as well. I am asking anyone who we are in contact with often to get vaccinated. The kids will go back to school soon and it will be a whole new set of worries and exposure. Hudson has to have a series of vaccines because of his age, so he is not fully protected right now.
Whooping cough attacks the respiratory system. Hudson has many strikes against him, and as I was reminded, this virus kills healthy babies.

What more can I do?

I trust...
I will pray that God will blanket Hudson in protection, that His plan is greater than mine. That any fear will subside knowing God is in control, and He will bring me peace.

I remind myself how God is in control and has shown me time and time again of this...

I was told if Hudson got Swine Flu, he could die....lots of fear...and he did get it, and clearly survived....and actually got through it fairly easy...praise God!

A few months back he got RSV....another one that can be life threatening, especially for children like Hudson...he survived....praise God!

Yes, God has a plan for my super hero....I know Hudson is here to serve Him, to encompass Gods love and goodness and to spread that here on earth...
I thank God for him, for his mission, for giving me such an angel boy who is teaching me life lessons....I will pray for his mission to be a long one, that no whooping cough epidemic will touch my boy....I pray, I do my best to protect, and I trust. God is in control.

Be Strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.
Deuteronomy 31:6

A sigh of relief...

After 2 nights of nursing Hudson and staying awake suctioning,etc , I am happy to report he did not need hospitalization. He rebounded quite well actually...he still is coughing and bringing up alot of mucous, but he is sleeping peacefully through the night...and now so am I too.

Many thanks to all of you who faithfully pray for our family.

little H is not fine...

he is sick :(

I thought it might be fatigue, due to our 1 day heat wave which was yesterday as it hit the 90's and I don't have an air conditioned house....
but my mom does, and Hudson made a go of it there, but at 2 a.m. he had never quite fallen asleep and was struggling significantly.
I took him home, cranked the O2 with the mask and suctioned him all night. He hit the mid 70's at his lowest O2 levels. Finally at 6a.m. he fell asleep, and now he has been steadily sleeping and sating in the mid 90's.
There is a all time high rate of whooping cough in our state...that weighed heavily on my mind as he was coughing and choking on thick mucous through the night.

Oh the joys of being a single mom and juggling it all...the fragility of one, and the "can't dissapoint" of the other two....
(thankfully my mom is always here to help!)

Praying this does not end up in the hospital...
both my kids are at day camp all week, and I need to be home for them. I won't know how serious this is until Hudson wakes....

I am desperate for prayer for my angel.

Anxiety over big H....little H is fine

I woke at 2a.m. tossing and turning....
I would never want Hunter to know I am as anxious about him leaving for scout camp as he is.
This is a kid who loves to sleep...loves his mommy...and loves his home. He is not a fan of sleepovers with friends...he is sort of an "old soul" in many ways.

Last night I prayed over him, and for his week ahead. He had tears in his eyes as I kissed him goodnight, and he said "I am going to miss you so much mommy"

I got weepy too, but held it back. I told him he will have a blast, and reminded him it is 5 days out of his entire life....5 days!

He has never been away from home, without family for 5 days. He did a campout over night with the scouts....1 night, and he was exhausted and so happy to be home....all I could think and wonder is how in the world will he handle 5 days???

So yeah...I am a bit anxious about 5 days without my boy....
they have a schedule, and he has his buddies, and they will be super busy earning badges, and getting dirty, and swimming and just being boys....
He obviously couldnt take his cell phone, but his leader is well aware of our situation, and that Hunter lost his daddy 7 months ago, and that their is anxiety about being away from home. He made it clear Hunter would be able to call me if he needed me for any reason.

So this morning, he is off....
and no tears were shed when we said goodbye...he was with his friends and he was so excited to begin his adventure...

and of course the mom I am...I was the last one standing there, waiting for them to load in the cars, to say my goodbyes....


Friday night camp ends with dinner and ceremonies...however I will be picking Hunter up early, after breakfast, and then bring him home to shower and get clean clothes, and then I have to meet my brother and his fiance, where they are taking Hunter and Hailey to Sunnyside WA, to hang on the farm and lake for the weekend.....

So it is just me and little H next weekend...

and my good friend from Lake Chelan may trek up here to hang out with me for a girls weekend. Although I am a little worried....I have trouble keeping up with that girl! :)

Hudson.....sweet Hudson is holding his own. We make no progress, but we are sort of just in this holding pattern. I won't complain. We have managed to stay out of the hospital for 2 months now, which is a wonderful thing. His seizures remain daily...some days are worse than others, but he is having far less than he was a year ago. He remains gunky, and I still go nowhere without his suctioning equipment.
He has ESY this summer for P.T. so he goes in clinic once a week and then his school PT comes to the house once a week.
He is such a trooper...
I have been really insanely busy with house stuff...making changes that really disrupt life....Hudson gets pushed aside often as I get wrapped up in things around here. He is always so good...not demanding....such an angel....I am truly blessed. I know he could be way more difficlut, and needy....and he is just not. Being a single parent to 3, and one sick child....I could go out of my mind....but my kids are pretty amazing,and I feel very lucky.

I had some workers in my home last week, and when they were done with their job, they left saying that they are in many homes, and see many kids, and they thought my kids were the most well behaved, well mannered kids they had seen. What a compliment!!!
For the most part they are....but they do have their moments, especially the sibling bickering....
but I was pretty proud to hear such an observation....I guess I am doing something right! :)



Many times I second guess how I am doing, given all the trials and circumstances...I feel spread so thin...I am pulled in so many directions...I worry I don't give the kids enough of my time, I worry about Hudson getting pushed aside, or the other 2 getting pushed aside because of Hudsons needs. It is all such a balancing act, and at times can feel like too much for one person to have to balance...

but when someone compliments my kids, especially strangers....it boosts my mom confidence a bit.
Love my kids, I pray for them, and pray God directs me on how to mother well.

I will take prayers for this upcoming week....that Hunter has a blast at camp, and my worries and fears subside...I am trusting in the Lord to bring me peace.



***************

It's 10:30ish, and a sobbing Hunter just called me and says he can't bare the thought of spending another night away from home, which means i will pick him up tomorrow. I should have known not to attemp this...but had to let him try.
My heart breaks for my boy tonight....bless his heart.

Closing out June

It has been a really busy month, as it is for most.

School Ended....

Kids last day of school

Goodbye's to wondeful teachers....

And I have to brag, I am one proud mamma...
In spite of a very diffcult past 6 months, Hunter made Honor Roll all 4 quarters, and Hailey had straight A's all year. (There is no "honor roll" in 2nd grade)
They both worked hard, and both teachers told me how kind they are and what good friends they are to their peers. They too were impressed how well they have adjusted in spite of what life brought us.

Life long friends

We upheld our tradition, and celebrated the end of the year out to lunch with friends.

This month also brought three birthdays....

sending our ballons and birthday cards to heaven

Katelyn and Fred share the same birthday, but this was an extra special birthday because Kate turned the big 2-1!!!!!!

In this pic...Hailey, Katelyn, Sandi (mom), Fred, Adrianne (Fred's daughter) Isac (Adrianne's boyfriend) Me, Hunter, and Hudson in stroller.

It was alot of fun to see Kate have a glass of red wine...I had one with her :)


The highlight of June was a rare day in the making...totally not planned, but everything aligned perfectly and 3 of my very closest friends in the world came together on a Saturday evening to hang with me, and give cheers to Kate turning 21, and another great friend, who happens to be my friends husband, had a birthday too ....YOWZERS...did we have some fun!

BF, BF's husband,me, Fred, BF, Kate

I felt like the luckiest girl in the world having all 3 with me in one night.....

My 2 local bf's starting the evening with me

Then my 3rd bf strolled in..coming from the Chelan area

We were having some serious FUN!

This tavern is the best place in our own little town of Gig Harbor....so fun!


We end this month, crossing the mountains and heading out of town, for a week long stay in Lake Chelan. We planned it right before school got out and it was a big suprise for the kids the last day of school....

How was the month for Hudson????

He managed to stay out of the hospital in spite of catching his brother and sisters cold...

Every day we do lots of suctioning, and coughing, and seizures are there....but about the best they could be for little H....

His May birthday

He had his first botox injection in his salivary glands...I think we need to try a bigger dose and sedate him for the next round.

I am hopeful that the dry, Eastern WA heat will dry him out....we are all in need of some sun!

Looking forward to our getaway as we head out tomorrow...ready to create some fun, new memories with my family.....a happy early 4th of July to all!

How God simply amazes me...

I am completely in awe how God always knows what I need and when....

Today is a very difficult day...today is my husbands birthday.

I had no intention of coming here and writing...I had and have no intention of sharing anything that is so painful and hard...BUT, I can't help but share how Gods providence, how his unfailing love touches me, how he know what I need in the exact moment....it is so beautiful how He works.

You see...I left it up to the kids how they would want to honor their dad today. They decided to make cards and write letters to him when they got home from school...of course it made me cry reading there words to their daddy. We decided we would attach these letters to a balloon and send them up to heaven. Both kids said it is too painful to go to the cemetery, so we will do it here, in our backyard.


I too wrote some words to my husband on what would have been his 45th birthday today.
When I finished I sat at and cried (just minutes ago)
As my tears fell, I decided to delete a bunch of emails that were starring at me as my inbox was way too full.
Many emails I will delete without even opening...I was hitting the check mark one after another to be deleted. I had checked the following email that was delivered in my inbox today,on his birthday, and then I decided to uncheck it and open it up and read it, and this is what it said.....



Blessed are those who mourn, for they
will be comforted.
( Matthew 5:4 *NIV )
Dear Debbie,
When you lose someone that you love, take comfort in
knowing that those who were saved are now with God. For
it is written that when we die; The dust returns to the
ground it came from, and the spirit returns to
God who gave it. ( Ecclesiastes 12:7 )

Therefore; Brothers, we do not want you
to be ignorant about those who fall asleep, or
to grieve like the rest of men, who have no
hope. We believe that Jesus died and rose again
and so we believe that God will bring with Jesus
those who have fallen asleep in Him, at the end
time. ( 1 Thessalonians 4:13-14 )

So Debbie, take comfort in knowing you will see them
again, for it isn't the end of them but only the beginning! The
beginning of a much better life where; He will wipe
every tear from their eyes. There will be no
more death or mourning or crying or pain,
for the old order of things has passed away."
( Revelation 21:4 )

Now I would like to share something with you that has
helped many who have lost someone. It is called "Safely
Home." I pray that it will minister to those of you who
have lost a dear one.

SAFELY HOME

I am home in Heaven, dear ones;
Oh, so happy and so bright!
There is perfect joy and beauty
In this everlasting light.

All the pain and grief is over,
Every restless tossing passed;
I an now at peace forever,
Safely home in Heaven at last.

Did you wonder I so calmly
Trod the valley of the shade?
Oh! But Jesus' love illumined
Every dark and fearful glade.

And He came Himself to meet me
In that way so hard to tread;
And with Jesus' arm to lean on,
Could I have one doubt or dread?

Then you must not grieve so sorely,
For I love you dearly still:
Try to look beyond earth's shadows,
Pray to trust our Father's Will.

There is work still waiting for you,
So you must not idly stand;
Do it now, while life remaineth--
You shall rest in Jesus' land.

When that work is all completed,
He will gently call you Home;
Oh, the pleasure of that meeting,
Oh, the joy to see you come!

*TEARS*
Isn't God an awesome, comforting, loving God?

This has brough me peace tonight...thank you Jesus!



************************

Prayer warriors....please keep H in your prayers....he is sick again, and I am not sure how long I can avoid the hospital. I am doing my best to treat him here as tomorrow is Hunter and Hailey's last day of school and I have things planned for them....please lift Hudson in your prayers to get through this illness without hospitalization...

A Birthday Letter

Dear Hudson,
Wow buddy...five years we have shared together...in some ways it has flown by, and in other ways it has feels like we have been together forever!

You have taught me so much...about myself, love, strength in the midst of weakness, God's grace...you have opened my eyes to the things that truly matter, and have made me realize each day is a gift.

I could have never imagined when I found out you were so sick, that there would be a day I would be able to sleep again, not be consumed with worry, not cry, not feel anxious, not question everything and mourn for all that was no longer....if I had to rely on myself and my strength to travel through this with you, I would have never survived this. I would never survive the hospital stays, the meds, the pokes, the tube feeds, all the cries that I can't fix....
YOU have taught me to rely completely on God...to lay my fears, my anxieties, the sadness and place at his feet....to trust, to be stripped away from all the dreams I had for you and come to a place where I know Gods plans are so much greater than mine.
You are a teacher, you are on mission...you preach to others in your silence, in your determination and fight.... in your  faith....Yes, you are the most faithful little boy I know....you never take your own path, you never wander...
your always living your life in the light of Jesus, you are breathing and it gives Him glory...how amazing you are...

Hudson, if I could take this disease away I would....if I could spare you the suffering, I would. If any child on this earth deserves a miracle of healing, you would be in the front of the line. But who am I to argue with Gods plans??? 
I am so, so proud to be called your mom. To care for you, and feel your unconditional love for me. Thank you for always fighting the good fight...for mustering up unbelievable strength in your weakest of days. You deserve a big red cape, with a large S...you are my superhero.

I pray that your fifth year of life brings some really great things for you...I hope you know how much your family loves you and how much I personally admire you. It is an honor to be called your mom...i absolutely adore you!

Tonight when we close our eyes and blow out your candles together, my greatest wish for you will be the same wish I have wished every year....
 I will never stop believing in miracles...and then I will just sit and be thankful that we have had this time together, and pray for a great year ahead.

I love you my sweet baby boy...always keep your eyes on Jesus as you glorify Him in this life.

All my love,
Mommy

Home sweet home

We flew the coup on Sunday... It felt like THE longest hospital stay!

Hudson is doing ok... I cancelled both therapists today because I firmly believe sleep is so crucial in his healing and he gets very little inpatient, as they constantly wake him for ctp, blood draws, vitals, etc.
Bless that little boys heart... he slept all night and woke at 12p.m this afternoon....tell me he doesn't know when he is home and in his bed!

I have this need to not want to go anywhere with him...I think if I could keep him in a bubble, I would! I don't think I can stand to see him catch anything else, I don't think I could stand to be in that hospital one more time... I need him to get back to baseline... I feel like I don't even know what that is anymore! (((sigh)))

I am happy to report that we will go forward with the Botox on Thursday.
I seriously need this to work... He just works much too hard handling all these secretions. If this works it would be huge!

Thanks my faithful friends who never stop praying for my little H, who lift me up daily, thank you for walking through all this with us!


xoxo Deb and H

A MUST SEE or HEAR video

http://vimeo.com/35936679

(copy and paste to browser)

If you have ever questioned Gods goodness, if you have ever asked "why my child? Why me?'
If you ever wondered why God would allow His children to suffer...If your faith has been rocked by such trials as haven been given a sick/SN child....

You need to watch this video...find the time...you can listen or watch...just do it!

For me personally....
To hear this story....
That of a pastor and his wfe in eastern WA, who have been given the trial of not just 1, but 2 children with the same affliction...the honest account of all the emotions one goes through as you learn your life will never be the same... the fist shaking and questioning of God...he spoke to his church family after getting the devestating news on ultra sound in Dec. 2011. Last week his baby was born, and Thursday his first surgery was performed, here at Seattle Children's.

Normally it would have been difficult to find the time to watch this, but with all the sit time in the hospital, I was up until midnight watching, relating, crying.
All I can say, is apart from Gods grace poured out on me daily, apart from Him guiding me through the storms... I would have crumbled long ago. I could not and can not do what I do apart from Jesus.

Enough of me... PLEASE listen, or watch this... and be sure to grab some tissue...I am certain many of my SN mom friends will be able to relate to this dads account...and then join me in adding another beautiful child and his family to your prayers.

Journaling my thoughts

Being I am sitting in the hospital for almost a week now, I have an opportunity to lay my thoughts out.

It amazes me how this journey never gets easier, how seeing Hudson struggle day after day, year after year, for almost 5 years now...and it is still so incredibly painful to witness. We have been in the hospital so much in his little life...with every blood draw, every I.v., every time a nurse or doctor manipulate him to do something he doesn't want to...the cries and screams are so unbearable... I see his body flailing about, fighting...I catch a glimpse of his little feet, that still look like that of a baby, kicking and pushing through whatever is being done to him.

There is nothing I can do to save him, there is nothing I can do to soothe him... they are trying to help him....but he has no way of understanding that...he is scared, he is hurting, and there is nothing I can do to take the pain away from my helpless child.
It never gets easier.

I wonder why I have had to endure so much...I wonder when I will feel true peace...sometimes it simply feels like too much, like I am at the end of my rope...
I look at Hudson, and fear the future. I can't imagine more loss in my life, or for my kids.
Hudson not living a full life is eminent, and I hate that. I hate that I seem to think about that more than I ever used to. As my anthem for this year is "taking it one day at a time" I know that I have to treasure each day I am given...with Hudson, and really with all those I love. There are no guarantees for tomorrow.... only in the present moment.
I am seeing an amazing Christian counselor who has been helping me sort through all my feelings. I know fearing loss is normal in the wake of loosing my husband. I know trusting God and His timing is where I have to lay my fears. Some days that is harder than others. Especially days when I sit in a hospital and hear Hudson in misery crying and hurting...struggling to breathe, coughing up blood and mucous, bruises all over from blood draws and i.v's...meanwhile, Hunter and Hailey want to know when their baby brother will come home, and their mommy. When I do go home, exhaustion sets in... I am short fused, I have to catch up on house stuff, mail,homework and school stuff...the list goes on and on, and some days it is too much for one person. I know life isn't fair... My life is proof of that...loosing my dad at 3, having a sick child with an incurable disease, loosing my husband, knowing I will likely outlive my 4 year old...
Really too much for one to have to endure...but this is the cross I have been given...and I am doing my best only by His grace. These trials are my stepping stones to draw me closer to Jesus...to rely better, to trust more, to love wholly, to give selflessly...I choose to lift my eyes and hands to Him, no matter how hard this life gets...this life is a blip on the map, it's a moment in time, eternity is forever...my tears will be wiped, my son won't hurt, I will know true peace, and I pray I will stand before Jesus and hear Him say "well done, my good and faithful servant"

On May 14th, Hudson will turn 5. I remember when I found out Hudson was having infantile spasms at 4 months, and read about all the devestating things I.S. meant. I didn't even know his seizures would actually be a symptom of a progressive, terminal disease, which would cause more devestation. I wondered what he would be like at age 5...I wondered if we would defy the odds of this seizure disorder I had never heard of...
I never would imagine we would be that worst statistic...a beautiful baby boy stuck in a body that seized endlessly , a body that doesn't walk,talk...has never giggled...he will never eat his birthday cake, blow out his candles, open a present, or give a kiss...he will never fully understand how my heart breaks for him on a daily basis, and that I would lay my life down in exchange to give him life here.
5 years later, I still mourn all the things he is unable to do...
but I also celebrate 5 years later, he is here. He fights so hard to live, and I know it is because God has great purpose in his life... Hudson is on His mission, and his life is giving glory to God.

Slow boat to recovery

We are still in the hospital. Hudson ran a fever of almost 103 the first day, was very dehydrated with low output, and seizures were off the charts.

Yesterday was a day of sleep... He just was exhausted from the day before. He woke in the afternoon and was coughing a ton, with lots of thick mucous. His saturations took him from cannula to mask.

This morning we put him back on the cannula, and he continues to cough up some nasty stuff, he is no longer running a fever.
He was put on prednisone again, so I am preparing myself for Mr. Prednisone Cranky Pants...last time in March, with each passing day on prednisone he became more and more irritable and whiny. It's some nasty stuff.

Hudson is doing better from the day I brought him in, but it's super slow and I think we will be lucky if we get out Friday. My hope is we get out Friday... It is no fun spending the weekend in the hospital, and I hate being apart from the other two. Of course, Hudson is right where he needs to be... but 2 hospital stays in 2 months, and doing this alone... It's exhausting.


Philippians 4:6,7, says: Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Another sleepless night.....

trying to manage Hudson in respiratory distress....

Leads to another run to the ER... and admission for rhinovirus. Prayers are appreciated.

Botox anyone?

As my "big birthday" approaches, this post could very well be about me...because I'd be a liar if I said I have never considered filling the squinty lines between my eyes or my forehead with a syringe or two... BUT this is a Hudson post....and I could use a little feedback.
We saw ENT yesterday and decided Hudson's adenoids are not large enough that removal would make a significant difference. The risk of putting him under and surgery is....risky!
This dr. did agree Hudson sounds like he is drowning in his secretions, and so we decided our next step would be trying Botox injections in his salivary glands, which would be less risky.
There is a risk it could affect his tone, which is little to begin with, but we are going to try the smallest amount and see if it helps. Anyone out there try this or know how well this works with reducing secretions? Hudson is soaking the top half of his shirts and sounds junky ALL the time... would love it if this would help! We are scheduled in 2 weeks... 2 injections on each side of the face...
Hhhhmmmmm...it is actually a week before my birthday... Wonder if I could "accidentally" shove Hudson over and get my face in the way of those injections!

Where do I begin?

I seem so removed from blogging...what used to be so therapeutic no longer holds the same effectiveness for me. Maybe I just need to dive in and start doing it again and hope I will find its purpose and usefulness in my life. I am not sure.  If I may be honest, I have turned inward in the past 4 months...my world, my emotions, my life is very private...so coming here and blogging is difficult...because I have always been about being totally honest and raw...and yet the pain of the last 4 months I have experienced is nothing I want to share. There are less than a handful of people who have walked with me, who I have allowed "in"....we all deal with things, especially life changing things, differently...I have seen unbelievable love and grace poured out to me and the kids, and never knew how much we were loved by so many...it has been humbling. Jesus has shown up all around us....so grateful for the abundance of love. Sadly, there is the flip side...sometimes, some people thrive on gossip, and on others pain, I don't get why this is so, but maybe it is just human nature. That adds pain to the pain....I will not allow such things touch me or the kids. We press into God....He has been so faithful, and my kids are thriving and actually doing really well. No one would ever choose pain and heartache to face their children at such a young age (or any age), BUT, I see how my kids press into God, how their faith is built on Jesus and His promises...it blows me away, and teaches me to be more childlike. I am confident these trials have brought them in closer relationship with God and in faith...this will sustain them through life...and any future trials they will have to endure through life....and we all know how difficult life can be!
Then there is Hudson....I never imagined a bigger trial to have to endure, a more catastrophic, life changing event, then when we found out something was wrong with Hudson. It is still very painful and I am unsure I will ever come to full acceptance. The past 5 years....all I can say...it has been alot, more than one family should have to bare. Because I am honest, the truth is, I think about Hudson and his little life alot. Our family has endured so much...I see so many mito kids dying at the hands of this awful disease...our mito world has lost so many in the last year. Recently, Emily Evans flew to heaven, and my heart has been so heavy...when I found out I was full of tears. This life can be so unfair. I look at Hudson and am so grateful he is here...he pulls through each and every hospitalization, he fights so hard daily to simply live....the reality is this disease is cruel and unfair, and our children suffer so much. I don't want to ever imagine living without him, I can't imagine the kids and I dealing with anymore heart ache and suffering...I also know aside from a miracle, Hudson's life won't be a long one...and this just sits in the back of my head... no mom should have to stew on such thoughts. All I can do is trust God and His timing...He knows what we need, and when and how....I am certainly not the author of my life...so I am learning to trust He who is penning it.

Hudson is doing o.k. He is still gunky but in a different way then when he was so sick. Nest week we have 2 appointments at Children's to follow up from our hospitalization. The kids are on spring break this week and I had two offers to get away...one with a friend to the Oregon Coast, and another to Eastern Washington...I had to decline both...Hudson's needs are greater now than ever. He requires O2 at night...the converter is big and very loud. I do have a tank as an alternative, but I just felt home is the best place for him, and the best for my peace of mind. I feel bad for Hunter and Hailey...I didn't even tell them about the Oregon Coast with their friends because I knew it would only disappoint once I made my mind up. They would have liked to have gone to E Washington, just to get away, but they have been super understanding. We did have a double play date, they went to the Pacific Science Center with friends, my wonderful friends/neighbors took the kids to  The Wizard of Oz in the movie theater and lunch, tonight Hailey will go on a dinner date with her Uncle to a fancy restaurant, we have some sleepovers planned...so it  isn't a total bust. It is just such a hard balancing act....Hudosn's needs, keeping life stable and steady for Hunter and Hailey while trying to add fun, finding any time for me and my well being...
Slowly I have integrated some "me" time....how???? I was granted hours through DDD to get help in Hudsons care. He did not qualify for any nursing, but I could pretty much employ a trained/certified caregiver full time with the hours I was granted. I didn't have it in me to call an agency and get some random person...I went the route of getting word out in the community, praying God would provide the right person at the right time. So far, I have 1 gal. She works for 2 other families so she is filling the gap in her day with Hudson. We knew several mutual people, and although she is young (24) she has been doing this for 8 years and grew up with her own sister who has CP. So far so good....we have a flexible schedule so every week is different...it has allowed me on some days to go to work without brininging Hudson, workout more regularly, shopping kids free, and I even went to the opening Mariners game last Friday with NO kids!!! I paid her extra to keep all 3 :) I could really use another person or two but my mom is also going to get trained and be paid help as well. It has been great to have a non family member be able to feed Hudson, carry him, suction him, dress him, use his oxygen, etc. The little help I have gotten has made a huge impact on my life. I hope and pray for more of the right people to come along so I can really utilize the hours I have been given.

I am living a day at a time...I am healing with time.... I focus on God and my kids daily, and keep that as my priority. I am thankful for friends and family who lift us up daily, as we continue to plug along one day at a time. I am thankful for Jesus.

Quite an Easter

Quite an Easter indeed...first my brother...then Hailey and Hunter. New life in Christ, New beginnings!


(I love how Hunter is cheering his sis on in the background!)

You can imagine the mess I was witnessing all of this, and I loved how their Uncle was a part of baptizing his neice and nephew...so proud of all 3!

An update on Hudson to follow...