Glass
Today Parklen was discharged from the hospital.....yes discharged.
It came on fast............
They have been talking about it for a couple of weeks..........
I am always hesitant to share decisions that are in the works because there is nothing worse than global disappointment. It is always one thing to have been told you are leaving the hospital and then have something come up (as it often does...) and have to deal with the feeling of getting your hopes up and having them crash.
It is a whole different story when the same occurs........only you must then explain to everyone you know what has happened......their disappointment amplifies your own.
After years and years of this business I have learned that its best to keep certain things to yourself until you see that the steps have been put it into motion and you know that the ball is rolling.
The ball is rolling.....
it has rolled....
there is goes....rolling on by.
I have been finding myself sobbing........a lot.
More than I feel like I should be.
Of course, our family has hoped and prayed for this moment.
It is a pure and total blessing that it is happening so soon,...and with out incident.
Parklen has taken expectations,.....
the unknown....
the scary...
He has taken these things and with the help of answered prayers he has beaten them.
It is a hard thing to explain...
the anxiety of Parklen's discharge.
I know how to parent a sick Parklen.....
I know how to do that very well....
This new Parklen is all different.....
He has different needs,
different weaknesses....
different medicines....
different schedules....
different BONE MARROW....
and I am just now becoming a mom to this boy....
He has changed before our eyes....
and I must change too.
The anxiety comes with a knowledge of just how fragile he is.
He is physically stronger than ever....
He feels better than he has in his life....
He looks amazing....
but behind the scenes there is another story....
His immunity is super weak....
it takes time to build it up.
His body is still getting used to its new members....
It is cold and flu season....
It is a dirty and gross world filled with coughs, sneezes, unwashed hands.....
I feel as though they are handing me a glass egg....
A fragile and breakable glass egg....
Here Amanda, take this egg.....take it into the world....keep it with you, keep it protected.....keep it safe....Ohhhh be careful Amanda, don't get fingerprints on your glass egg....watch out, don't let the egg get cracked, or even worse....broken.....
Amanda, we are trusting you......
We are counting on you........
don't let us down.....
don't let Parklen down....
oh and goodbye and good luck!
YIKES......
It is two sided coin...
flip it to one side and take in the pure miracle of Parklen's healing....
the speed at which he has gotten to this point.....
the future you can see for this boy....
Flip it again and witness the severity of his protection....
Only God can give me the needed strength for the coming days....
Only God can mold me into the mother I must be...to Parklen who needs me differently than ever before....to Paysen who must be filled with my love on the two days I see him each week....to Phinlynn, who is developing from a little baby to a ball of sass.....
God help me.....
Parklen grasps the severity of his protection more than most five year olds probably would.....
blame it on years of feeling awful...
years of sickness...
years of surgeries...
illness....
hospital stays...
emergencies....
blame it on his experiences....
but this kid knows enough to know he doesn't want to go back to that life....
He understands that the mask is his new norm.....
that he has to wear it everywhere....
He understands that he cannot go into public just yet....
He even knows that this summer won't include a lot of his favorite activities......
He is excited to be heading to the apartment.....
excited to leap into this next phase....
we will be taking him to clinic a few times each week for blood tests, infusions, blood products, and check ups....
but, God willing....we will be sleeping away from the hospital each and every night.
Saying goodbye to Parklen's nursing team brings tears to my eyes....
I fought hard to get a good team of care for him....
and they have all made their way into a special place in our lives....
Strange thing happens when you have a child in the hospital for so long....
a lot of these nurses I have known for a years.....
and you see them every day....
they become your friends...
they become people that you care about.....
and then it is time to say goodbye to them...
to the ones that supported you through your hard times,
listened to your cries.....
hugged you when you needed it....
laughed with you when the time was right....
the ones that have come to love your child....
the ones that have rooted him on during the marathon of transplant.....
Once we left, and the doors to the closed unit slammed shut....that was it.
We may run into the people we have grown to love.....
but we cannot return to where we were....
there are sick kiddos in the unit and we cannot risk exposing Parklen....
So, we transition to the outpatient clinic team....a team we already know and love as well....
and I am not promising that I won't stand outside the unit and wait for the doors to open so I can scream.. "Parklen is here!!!!!" so they can come to say hello. :)
Enough of that business.....
Let me talk about the miracle that is Parklen.
When we made the decision to go forward to transplant it was made very clear that Parklen's fate was unknown.....I signed a piece of paper that stated that he may not survive.....that the transplant may not work, that there were a list of risks......
The doctor repeatedly told me, "I don't know how Parklen will do."
We were all expecting months and months of inpatient status......
and although we had accepted this possibility, we began to pray for a miracle.....
We prayed during chemo that he wouldn't feel sick,
he made it through the entire week with minor sickness....
We prayed that the mouth sores would not take over his mouth and throat....
there ended up being ONE visible mouth sore.....ONE.
We prayed that Paysen would stomp through his surgery....
by the next night he was running and jumping....
We prayed that the transplant would take quickly and perfectly.....
he managed to actually engraft on his momma's birthday.....weeks before we expected.
We prayed that he could eat and prevent another feeding tube....
he is going on week two of no tube......after 5 months with one in place....
We prayed that he would gain some weight....
he is morphing into a healthy looking boy.....
We continually heard from doctors and nurses and hospital staff that, "the sickness would come...."
We prayed it wouldn't be so....
and God answered.....
Parklen made it.....
through to today with very minor sickness....
so minor that it could not even hold a flame to his former life.....
Not chemo,
Not a transplant....
Not isolation....
Not any of this can compare to the way he once felt.....
His disease....although rare and often overlooked, was life threatening......
It took years for me to convince people to look at him that way....
It took me feeling like a crazy and over protective mother for so long, before a doctor looked at me and said....."your son is dying....and if not for you he probably already would have..."
He was so sick.
Us walking out of that hospital today was the start of something big.
Overlooking the requirements of the coming months and years for even a moment.....shows a light at the end of the tunnel....and the light is so bright, even where I stand now, that I must shield my eyes....
His future is so bright.
He is doing so well.
and I will do everything with in my power to keep him this way.
I will follow every rule given...
no matter how difficult....
We prayed that God would use us.....
our situation.....
our heartache......
Use us to show His glory....
I get messages by mail, email, Facebook, comments on this blog....almost every day...stating just that.
God answers prayer.
God gets every ounce of the glory in this story...
He cannot be denied.....
and if you still aren't sure, if you still have doubts that God is behind Parklen's amazing recovery.....scroll back up and read it again.....
Nobody believed that Parklen would come out on top, and nobody believed it would happen so quickly.....
But God showed everyone who has followed Parklen's story....that miracles are possible....that they happen.....and that prayer is not just a mumbling of words in the dark.....
So, with this day coming to an end I say Thank You...
thank you for praying,
thank you for following our story....
thank you for believing in Parklen.....
please never stop praying.....
Parklen, however fragile my little glass egg may be......is preparing to do great things.....
and stay tuned....
because I have a feeling that this next chapter is going to be incredible.
It came on fast............
They have been talking about it for a couple of weeks..........
I am always hesitant to share decisions that are in the works because there is nothing worse than global disappointment. It is always one thing to have been told you are leaving the hospital and then have something come up (as it often does...) and have to deal with the feeling of getting your hopes up and having them crash.
It is a whole different story when the same occurs........only you must then explain to everyone you know what has happened......their disappointment amplifies your own.
After years and years of this business I have learned that its best to keep certain things to yourself until you see that the steps have been put it into motion and you know that the ball is rolling.
The ball is rolling.....
it has rolled....
there is goes....rolling on by.
I have been finding myself sobbing........a lot.
More than I feel like I should be.
Of course, our family has hoped and prayed for this moment.
It is a pure and total blessing that it is happening so soon,...and with out incident.
Parklen has taken expectations,.....
the unknown....
the scary...
He has taken these things and with the help of answered prayers he has beaten them.
It is a hard thing to explain...
the anxiety of Parklen's discharge.
I know how to parent a sick Parklen.....
I know how to do that very well....
This new Parklen is all different.....
He has different needs,
different weaknesses....
different medicines....
different schedules....
different BONE MARROW....
and I am just now becoming a mom to this boy....
He has changed before our eyes....
and I must change too.
The anxiety comes with a knowledge of just how fragile he is.
He is physically stronger than ever....
He feels better than he has in his life....
He looks amazing....
but behind the scenes there is another story....
His immunity is super weak....
it takes time to build it up.
His body is still getting used to its new members....
It is cold and flu season....
It is a dirty and gross world filled with coughs, sneezes, unwashed hands.....
I feel as though they are handing me a glass egg....
A fragile and breakable glass egg....
Here Amanda, take this egg.....take it into the world....keep it with you, keep it protected.....keep it safe....Ohhhh be careful Amanda, don't get fingerprints on your glass egg....watch out, don't let the egg get cracked, or even worse....broken.....
Amanda, we are trusting you......
We are counting on you........
don't let us down.....
don't let Parklen down....
oh and goodbye and good luck!
It is two sided coin...
flip it to one side and take in the pure miracle of Parklen's healing....
the speed at which he has gotten to this point.....
the future you can see for this boy....
Flip it again and witness the severity of his protection....
Only God can give me the needed strength for the coming days....
Only God can mold me into the mother I must be...to Parklen who needs me differently than ever before....to Paysen who must be filled with my love on the two days I see him each week....to Phinlynn, who is developing from a little baby to a ball of sass.....
God help me.....
Parklen grasps the severity of his protection more than most five year olds probably would.....
blame it on years of feeling awful...
years of sickness...
years of surgeries...
illness....
hospital stays...
emergencies....
blame it on his experiences....
but this kid knows enough to know he doesn't want to go back to that life....
He understands that the mask is his new norm.....
that he has to wear it everywhere....
He understands that he cannot go into public just yet....
He even knows that this summer won't include a lot of his favorite activities......
He is excited to be heading to the apartment.....
excited to leap into this next phase....
we will be taking him to clinic a few times each week for blood tests, infusions, blood products, and check ups....
but, God willing....we will be sleeping away from the hospital each and every night.
Saying goodbye to Parklen's nursing team brings tears to my eyes....
I fought hard to get a good team of care for him....
and they have all made their way into a special place in our lives....
Strange thing happens when you have a child in the hospital for so long....
a lot of these nurses I have known for a years.....
and you see them every day....
they become your friends...
they become people that you care about.....
and then it is time to say goodbye to them...
to the ones that supported you through your hard times,
listened to your cries.....
hugged you when you needed it....
laughed with you when the time was right....
the ones that have come to love your child....
the ones that have rooted him on during the marathon of transplant.....
Once we left, and the doors to the closed unit slammed shut....that was it.
We may run into the people we have grown to love.....
but we cannot return to where we were....
there are sick kiddos in the unit and we cannot risk exposing Parklen....
So, we transition to the outpatient clinic team....a team we already know and love as well....
and I am not promising that I won't stand outside the unit and wait for the doors to open so I can scream.. "Parklen is here!!!!!" so they can come to say hello. :)
Enough of that business.....
Let me talk about the miracle that is Parklen.
When we made the decision to go forward to transplant it was made very clear that Parklen's fate was unknown.....I signed a piece of paper that stated that he may not survive.....that the transplant may not work, that there were a list of risks......
The doctor repeatedly told me, "I don't know how Parklen will do."
We were all expecting months and months of inpatient status......
and although we had accepted this possibility, we began to pray for a miracle.....
We prayed during chemo that he wouldn't feel sick,
he made it through the entire week with minor sickness....
We prayed that the mouth sores would not take over his mouth and throat....
there ended up being ONE visible mouth sore.....ONE.
We prayed that Paysen would stomp through his surgery....
by the next night he was running and jumping....
We prayed that the transplant would take quickly and perfectly.....
he managed to actually engraft on his momma's birthday.....weeks before we expected.
We prayed that he could eat and prevent another feeding tube....
he is going on week two of no tube......after 5 months with one in place....
We prayed that he would gain some weight....
he is morphing into a healthy looking boy.....
We continually heard from doctors and nurses and hospital staff that, "the sickness would come...."
We prayed it wouldn't be so....
and God answered.....
Parklen made it.....
through to today with very minor sickness....
so minor that it could not even hold a flame to his former life.....
Not chemo,
Not a transplant....
Not isolation....
Not any of this can compare to the way he once felt.....
His disease....although rare and often overlooked, was life threatening......
It took years for me to convince people to look at him that way....
It took me feeling like a crazy and over protective mother for so long, before a doctor looked at me and said....."your son is dying....and if not for you he probably already would have..."
He was so sick.
Us walking out of that hospital today was the start of something big.
Overlooking the requirements of the coming months and years for even a moment.....shows a light at the end of the tunnel....and the light is so bright, even where I stand now, that I must shield my eyes....
His future is so bright.
He is doing so well.
and I will do everything with in my power to keep him this way.
I will follow every rule given...
no matter how difficult....
We prayed that God would use us.....
our situation.....
our heartache......
Use us to show His glory....
I get messages by mail, email, Facebook, comments on this blog....almost every day...stating just that.
God answers prayer.
God gets every ounce of the glory in this story...
He cannot be denied.....
and if you still aren't sure, if you still have doubts that God is behind Parklen's amazing recovery.....scroll back up and read it again.....
Nobody believed that Parklen would come out on top, and nobody believed it would happen so quickly.....
But God showed everyone who has followed Parklen's story....that miracles are possible....that they happen.....and that prayer is not just a mumbling of words in the dark.....
So, with this day coming to an end I say Thank You...
thank you for praying,
thank you for following our story....
thank you for believing in Parklen.....
please never stop praying.....
Parklen, however fragile my little glass egg may be......is preparing to do great things.....
and stay tuned....
because I have a feeling that this next chapter is going to be incredible.
God's richest blessings on all of you as this new journey begins! To God be the glory!!!
ReplyDeleteThe Lord bless you and keep you. The Lord make His face shine on you and be gracious to you. The Lord look upon you with favor and give you peace.
AMEN!!!
Thank you GOD for the wonderful miracles you have performed in Parklan's body!
ReplyDeleteAmanda, I originally heard about your story from Marci in our Women in the Word group at Highland a few months ago and couldn't help but be moved. Just as there have been prayer chains for Parklen here in Casper, there have been some set in motion all over the country. And I don't think prayer is void. As you mention, not just ramblings in the dark but God hears and rescues (Psalm 91). I cry and get goosebumps almost every time I read these posts because it is another testimony as to how faithful He is. As to how He actually cares. Actually loves. Actually lives WITH us. Much love to you, momma. God hasn't brought you this far to shove you out into the world with a glass egg and say, "good luck, girl!" He is with you as He has been every step. Praying for peace. That He will SPREAD His protection over Parklen (Psalm5:11). I have NO idea where I once read this definition of trust, but I wrote it down and have always loved it and I think you will too as you will be entering a new level of trust with our Maker in these next months. '"Trust=Real trust bounces on eager toes of anticipation-laughs with pure delight of knowing in whom it believes-rests easy knowing on whom it waits. Lord, so wrap Parklen, Amanda, Devan Phinlynn, and Paysen in the knowledge of you that my trust is no longer in you, but IS you." Much love to you all.
ReplyDeleteI am without words- only in awe (again) of the power of the Lord God Almighty---followed the amazing journey from Nebraska
ReplyDeleteOur prayers will continue for your family.
God Bless You and your family. I have followed your story from Ne and will keep all of you in my prayers. I recently saw a good friiend of yours who is married to my nephew. She gave me one of your bracelets. I am positive it will all go well from here. I am so glad a little boy gets to really enjoy life.
ReplyDeleteYour trust in the Lord Jesus is an inspiration to all of us. Sometimes a Mothers love is all a boy needs.
ReplyDeleteGary and Anna Wren
I'm so glad that you're not the person who says that this has been a "God thing."
ReplyDeleteOh yes, God gets the glory!
But our God has done so much more than a "thing."
God has answered so many prayers. True, His ways are not our ways, but I'm so glad that in this case they are! It's kinda like watching the Monarch butterfly emerge from its chrysalis. If you have never had the privilege of experiencing this miracle, the white, yellow and black caterpillar creates a green chrysalis in which it changes into a butterfly. After so many days, the chrysalis changes: it turns from a solid green to transparent! You can actually see the butterfly all curled up inside. It's hard to tell what it is though, because it is all rolled up. Gradually, the chrysalis splits and the butterfly emerges. After a long time, the butterfly drops to the ground. It's wings must dry, and this takes a few hours. Eventually the butterfly is able to fully open its wings and will keep them wide open in the sun in order to fully dry them. Shortly after this miracle is completed, this magnificent, fragile creature will make the trek thousands of miles to Mexico... all because that's what God wants for it to do.
Amanda-think of your glass egg as the chrysalis....
Love you and still praying-- Lisa in Dtown
"I can do ALL things through Christ which strengtheneth me." Phil. 4:13
ALL things.
ALL the time.
For ALL of my family.
With ALL of my heart.
For ALL of my life.
Because of ALL of Him.
Dido the above post! Parklen can do all things through Him who gives him strength!
ReplyDeleteParklen has come so far and its amazing how he has stayed happy he as my cousin is just the best feeling ever. Some blogs have made me cry even if I'm only 11. God Bless.Amen. :-) ~madysyn conner~
ReplyDelete