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.