I KNOW DIFFERENT

A poem which speaks our language.  Written by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥

Home Again

     We were able to come home yesterday from the hospital with some uncertainty as to what we could expect in the near future.  Medications have been altered, some added and some discontinued.  The ones that have been added need close supervision to make sure the dosages are the best for him.  One med is to make him sleep.  It hurts us to the core when we administer the med!  Every evening when we give it, Jacob is sleeping within 5 minutes.  He sleeps almost the whole night, maybe except for 10 minutes now and then.  It's so nice to see him peaceful, yet concerning to see him so sedated that we can change his dressing and he doesn't even stir.  We follow what the professionals say, yet without God's blessings, all will be in vain.  We pray that God will use the medications for Jacob's good.   
     
      It was indeed one of the most interesting admissions we've had to date.  We seemed to have it all in a matter of 2 1/2 days.  Sadness.  Humour.  Delight.  Surprise.  Overwhelmed.  Pain.  Reality.  Support.  Apprehension.

     We had fabulous nurses, which always makes the road much easier to walk.  One of the highlights was that we had Kim (our previous primary night nurse) on Friday.  It was so exciting to see her love, once again, being poured out on our little boy!  We had a humorous episode with her.  Kim came in to administer some meds shortly after we got the news that we could be discharged.  She was right at Jacob's level talking to him saying that he was going to go home, and therefore they couldn't play together any more.  As soon as she was done talking to him, Jacob let out a huge burp right in her face.  Needless to say, everyone in the room was doubled over (including Kim.)  I believe it was Jacob's way of saying, 'I love you, Kim.'
      
      We dealt with some difficult issues.  The week prior to our admission we were told 'for us to expect weight gain is unrealistic.'  That was the toughest news we've heard in a while.  Again, the negative was set before us.  Our hospital stay brought more things to the surface regarding the care that Jacob is going to need.

      The road ahead looks so bleak, so rocky, and tough in almost every aspect.  One way in which the road looks bright, is to have Lisa walking beside us.  She comes with a wealth of knowledge and experience.  She's genuine.  In the role she plays, she is the bearer of bad news many times, yet she does it in a sincere, gentle way.  She's wonderful.   For our situation (and I'm sure in many others) she's been a huge blessing!! 

Lisa, the palliative nurse practioner

Caleb turning a hospital visit into a game!  No one was able to leave (or enter) the room.

Bein somewhat more agreeable.  We were allowed to leave. It's a beautiful thing for the kids to be able to visit the hospital with a positive mindset!  I'm not sure who loves the visits more - us or the kids!   

     

Another Hospital Visit

     Early yesterday morning, we brought Jacob to emerg because of a high fever and LOW oxygen saturation.   He has a pneumonia - a different one than he typically gets, and thankfully he is doing so much better already!  Amazingly well!!
    After having a hard discussion with Lisa, our palliative nurse practitioner, it was decided that we needed to add a med to put Jacob to sleep every night.  Another negative!  He just won't sleep enough without some help.  Without the proper sleep, he is constantly GRUMPY!!  It's just too much to handle a boy that cries for hours on end with us not being able to do a thing!  Hopefully with more sleep, he'll be happier when awake.  Time will only tell. 
     We will monitor him tonight in the hospital, and if he handles that ok, we'll be heading home tomorrow.  Once we are home and he's proving to do well with the med, we'll work on getting rid of two of his meds he's currently on, which don't seem to be doing the desired affect anymore. 
     So, hopefully tomorrow is a day that we can reunite as a family again.
     We covet your prayers!!

      

Miracle

     Miracles happen often, but we need the eyes to see them!  Amazingly, we were able to witness a miracle this morning...

     Yesterday was a day of great uneasiness and many questions.  Jacob's lungs took a turn for the worse.  We were on the lookout for anything that causes concern - fever, oxygen saturation dropping, increased labour to breath, increase in seizure activity etc.  The nurse last night, Meagan, was on guard.  This morning I woke up with Meagan telling me that his lungs were clear - all night!!!!  He had a really good night.  Amazing, is putting it too mildly.  It's simply miraculous.  God indeed is a prayer hearing God!!   We have so much to be thankful for.  Today he seemed much better than yesterday, so hopefully Jacob is on the road to recovery!  Praise God from whom all blessings flow!

Oh no!

      Our visiting nurse who comes every week to change Jacob's tube site dressing, assess his lungs and heart, and discuss any concerns, came today.   She's been with us since Jacob was discharged from the hospital at 6 weeks.   She's a sounding board, very understanding and thorough.  She dots the 'i's and crosses the 't's.  What  a huge asset we have with her on our team!! 

      Her conclusion of Jacob's current health is just what I was worried about - another respiratory infection which is getting worse!  This means we are on the brink of a hospital trip.  He's been battling for a few weeks, but it seems to be accelerating now :(

     Please pray that his health would stabilize and that we will be kept from the hospital!  Above all, we have to be submissive with God's will, no matter where that road leads us.  Submission - sometimes so difficult, yet so necessary! 

Unbelievable!!

 

      Well, today was a super special day in the life of Jacob (and his family!!)  Jacob was quite irritable for a lengthy period of time this afternoon.  After trying different positions, different music, changing a diaper (which really didn't need to get changed,) and me holding him with little result, I decided to try the 'little room.'  Oh, the excitement.  The joy!  I placed him in the little room and instantly he quieted down!!  He remained totally still for about 30 seconds, when suddenly it came - a smile, then a bigger smile, then a bigger smile with a giggle!  I wondered if it was a fluke thing, because I've never seen such an instant reaction in the little room before.  But, for an hour, he cooed and giggled!  Every time he would hit the toys, he would giggle!  I watched with tears in my eyes!  He was responding (and accurately.)  Amazing!  Beautiful!
    


Jacob in The 'Little Room' this past summer.

      Considering we were told at the onset that we would possibly see no or little reaction from our little boy, we see this as nothing short of a miracle! 
      This occurrence sure lifted my spirits after struggling with different things lately.  A huge concern is still his weight.  We just can't seem to put any weight on him.  Since February, he hasn't been able to gain - he's only lost.  This brings major concerns as to why.  What is his brain signalling?  He keeps growing in length, so therefore he keeps getting thinner and thinner :( 

The girls are becoming better helpers with Jacob all the time.  This afternoon Sheryl wanted to hold Jacob while I was busy.  She's one who sees humour in many things - including some of Jacob's expressions.  Today, he expressed his tiredness once she cuddled him tight.  He was peacefully sleeping!  She was so excited about her accomplishment!  I love when they have a positive exprience with Jacob!  It was another situation to be thankful for! 
 

Glad Halloween is Past!

   

     Halloween has always been my least favorite time of year! Halloween has seemed to take on such a gory, evil and haunted approach!  I’m beyond thankful that another Halloween season is behind us!

Last week, as I was walking down a store isle laden with Halloween paraphernalia, I felt sick and frustrated.  There were grave stones; making light of death. There were skulls, sights of the dead; again reminding us of the cold knuckly hand of death.  Daily we stare the reality of death in the face which is exhausting and heart retching. Not a day goes by where we are not faced with the reality that sooner or later, our boy will one day be in the grave (as we will be too.)  The fact that people mock with death – I simply don’t get it!  The store had limbs laced with blood - I've seen Jacob give enough blood, I don’t need to see blood again, let alone people joking with it. There were knives and scissors doing all sorts of evil things; knives and scissors in our lives mean surgeries, dressing changes, pain and suffering. I've seen enough pain and suffering from our little boy that I don't need to fake pain and death to enjoy myself!! 

It's been a tough pill to swallow as we go through town and the stores and see how much people delight in such festivities.  We see how much the forces of darkness fight against the Force of Light.