A hard time processing - Kelly

I can not blog long - I am dedicated to catching up over the next 2 days - well almost down to one day now.  But I need to share/vent/record. Whatever this is that I do.

I have spent the last week wondering if I have it all wrong.  If the truth/honesty/explore/question thing is the wrong way to live.  What I mean is when I started this blog I committed to be honest.  Not type about how perfect and happy my life was if it wasn't and not to leave out the anger or fear or questions - but to be honest.

This week I started to wonder - not wondering what others could take - i'm sure that honesty with in modern day america and modern day religiosity  will always be refreshing.  Actually wondered if it was beneficial. to me - to other moms.  I wanted to blog and I still do so that some mom somewhere would be okay b/c she knew the feelings she had were okay or maybe she wouldn't feel so alone b/c she knew someone had been there.  so that one day when I can't even remember the deep deep pain i felt - she would still know that some one else had been there and lived.  But now I wonder if maybe all the questioning, all the wondering - can you get through it.  Can you hurt and questions and seek and not find and get angry and live in guilt over your anger and hurt and still come out on the other side.

would it have been better to have bought into the cliches.  To have listened but never cared to understand as others tried to explain away what has happened to you.  It is a tragedy... God planned this... You were strong enough, that is why God gave this to you... God is teaching you... Kyle lived b/c you prayed hard enough... Kyle had a brain bleed b/c you didn't pray hard enough...  do you see - some sound ludicrous but some might have been easier to just swallow and believe and then blog to you about my white picket fence!

I feel like I put my head in the ground for 4 months and during that several bombs went off.  Everywhere - leaving all of my life affected (my husband is going to laugh but I always wonder when to use "effected" and "affected" I know ... sad!) and changed.  then one day I pulled my head out of the ground to look around and see what made it.  What was still there.  what friendship - and to what capacity?  what job?  what ministry?  what children?  what family?  who was still there - who was offended - who was hurt - who was silent?  

My life has changed so much but the hard part is that it changed without me.  I keep wanting to go back to who I was - I remember her, admire her, miss her, but I CAN NOT FIND HER!  I am not the same - how will everyone deal with that?  how will i deal with that?  how will my sweet precious innocent children deal with that?

so i guess I am realizing today, tonight that I don't get to go back.  I have to learn who i am now and this all might sound really cliche but it isn't.  cliche would have been giving out some line right now about how God does everything for a reason and not having a clue why i was saying it.

what I am saying is that I struggle with anger, stress, self worth issues as a mom, guilt for caring about anything other than the fact that my children are alive, who are my friends,  are they hurt from when I lashed out, why can't i pray for others, why do i threaten God with my love anytime I want something from him, why can't I feel empathy for anyone anymore, will all these things come back, will God still bless our ministry to others if I'm jacked up, when will I be back to me, and as much as I never thought I would say this... there are so many days that I just want to go back to the NICU where I feel safe - understood.  where others were like me, confused, messed up - so much in common with our little ones - a instant bond.  and the nurses - they took care of me not just kyle.  these were my friends and my support - they were there every step of the way.  and now they are gone - I cant' go up there and hang out - darn privacy laws!  j/k.   i thought people had lost their marbles when they told me that i would go through this.

anyway - so there is another dose of honesty.  i really do look forward to the day when this blog is about more positive moments.  I know they will come - just didn't think it would take this long.

back to work for me.

Bad Blogger - Kelly

I can't imagine any much worse in blog land than me asking you to pray so desperately and then not even updating you in a timely manner.  Hopefully you went straight to Baby Coy's site over on the side of this blog and took matters into your own hands!  If not - I'll fill you in.  Coy is home from the ER.  they were able to come home that night.  His CBC looks good; chest xray was a little wet, but then as soon as they got home the apneas started again.

John and I truly love this couple.  The are amazing parents and completely authentic.  Ann Marie is an amazing mom and every time you turn around she is fighting for Coy and doing what is best for him.  The ER docs at TCH sent Coy home - but Ann Marie has the high risk pedi, GI doc, and cardiologist all working on it!  I LOVE THAT!  Mothers intuition can even out weigh a doc sometimes ( and the good docs will admit that)!  You can catch up on Coy and see some really cute pics at Coy's Site.

PLEASE Pray for Baby Coy.

It is 9:30 on Sunday night.  Please pray for Baby Coy.  This is Kyle's NICU buddy.  His parents are our dear friends.  He is exactly 6 weeks younger than kyle.  also born at 23 and 4/7ths weeks gestation.  He has been home since just before his due date and doing well.  

He has been taken to the ER having apneas and bradys.  I will update and I'm sure they will too at Coy's site.  But please, right now will you stop and beg God to intervene and heal Coy's body.

Father, you are jehovah rapha, you created coy... you dreamed him up and knit him together.  I am asking you to heal him tonight, with your hands; your touch; your breath.  Please heal him.

Please continue praying.

Kyle and me - Kelly

"Answer me when I call to you, oh my righteous God.  Give me relief from my distress.  be merciful to me and hear my prayer." Psalm 4:1.  My friend Ann Marie put this on her son's blog the other day and it has made such an impact on me over the last couple of days.

It is funny to me how resilient our little guys are and how NOT we are.  I guess the older we get the more we lose that ability.  I am willing to be that even through all my worry and and fear and begging to God - if you were to ask kyle how he was doing ... he would tell you that life was great!  He might complain a little about the extensive tummy time and the cold lotion massages but other than that he would be grinning from ear to ear and tell you about how he loves to eat, his bed is so comfortable, he has this great paci that he gets to suck on when ever he wants, he has two brothers that are constant entertainment!  his mom plays with him TONS with lots of cool toys and we sing songs as I slings my arms and legs all over the place!!  again - he might complain here of all the tummy time where I wont let him chew his hands and won't let him just burry his face in the ground - but other than that... LIFE IS GOOD.  he doesn't worry about the future, he thoroughly enjoys today.  

I am not naive enough anymore to think that the mom of a micro-preemie could do this so I won't suggest it or pretend that I will do it.  Even when I have others remind me that their son or daughter didn't do something until a certain time frame or that adamant confidence that "he is just perfect"  it doesn't bring me a peace.  My first son did not walk until he was 16 months old and he is brilliant and so I totally get that but every time I think that (sorry for this honesty about to be thrown out of my mouth here)  I remember seeing the MRI pictures as the doctor pointed out the missing matter in kyle's brain!  Jadon didn't have that!  Or the therapist that reminds me of when you are born at 23 weeks you brain is forced to make connections to survive that it was not ready to make.  And the 26 weeker that is 6 years old and in GT classes didn't have that - so all of these stories even though they are meant to be encouraging  -  aren't.  [and please hear this as a mom just venting and not someone who doesn't want to hear stories that might encourage me - i'm just having a hard day and need to let it out here.]  It feels like no one has ever or will ever go through this.  No one can understand, no one can help.  I know this isn't true but I'm just being honest to how it feels some days.  I want to assume also that Kyle will do all these things and I really think I do - I just don't have the ability yet to downplay what  he or the rest of our family or all the other stud 23 weekers out there are going through just for the sake of being positive.  there ... I said it.... 

I hate to sound so negative but those are just some of the things that well up inside me and need to get out sometimes.  And I want to scream when this whole confrontation but like I realized the other day and I blogged about it in my last post.  I am going to have to give up - if I want to rest, if I want my heart to rest.....

you know - I bet to most on the outside think that I look at rest.  My face is usually smiling, My words I'm sure sound positive when I speak to people, and kyle looks really great - like a regular 12 week old (just with oxygen).  but always always always inside is this anxious longing; a constant deep wanting for something.  I have never bowed my head... not once... since oct 22nd at 9:05 am that I am not begging God to heal my son.  Everyone around me is blessing the food - I am begging for my son's legs, arms and core to work the way they need to.  my home group is praying for the person next to me and I am begging for his lungs to heal and his brain to be restored.  and i am still not sure how this matches with what God has dreamed up for kyle.  and kyle I feel like has such a positive prognosis physically and he is doing so well.  I am in awe of the women that I read about and talk to everyday that deal with even bigger hurdles than Kyle.  and even further as I struggle and wrestle over decisions or worry - my heart aches for the precious mom's that don't get to.  The ones that spent mother's day wishing instead of rushing.  We have been praying for a little 28 weeker named McKenzie that passed away just last week - in the NICU you learn to be so calloused to the ages.  28 weekers have such a good chance when you look only at age.  She had NEC.  I will never be able to even imagine what hurt this mom feels.  My inside aches so badly and my spirit truly groans on her behalf.  We never met McKenzie or her parents - Our friend, baby Coy's mom, is friends with her parents.  

God has given Kyle life and it appears to be life abundant (John 10:10).  So we will work hard and fight to pull out every ounce of potential that kyle has been blessed with.  And these mom's and these little one's are why we work hard.  Kyle's buddy in the NICU, Matthew - born at 23 weeks also - he is why we will work hard.  God has a plan ahead for Kyle and we will work until we get there - whether it is minutes or hours of therapy "play" each day - we will get there.  And we will continue to pray for these families for peace, for joy, for abundant blessing and even though I know they would rather have their children than our thoughts and thank-yous, we will continue to be grateful to them for how God has used them and the beautiful life of their children to change me.

and on the resting idea - I keep waiting for our circumstance to win - to change - to go away - I keep waiting for a moment when the fear is gone.  and not the kind of gone where I have listened to my friends and family long enough that I am convinced kyle is fine and then one therapy visit blows that security away.  - but the kind of gone where I am at rest on the inside.  I am coming to a place , i guess this is part of healing, where the only place it is over is in Christ.  I mean when I say - out loud - over and over - "Answer me when I call to you, oh my righteous God.  Give me relief from my distress.  be merciful to me and hear my prayer." Psalm 4:1 and then rest in the fact that God has given me a picture of my son running and playing in the back yard.  I believe that is truth.  he has given me scripture that tells me kyle is a lion and that he will lack no good thing!  And he has confirmed those scriptures.  That is truth.  so my circumstance is not going to change - my rest will only come in this.  i again see that God's peace will pass understanding.

Physical Therapy Update - Kelly

Kyle went to see his physical therapist on friday.  We see an occupational therapist once a week and for right now we see a physical therapist once per month.  So we had our appt last friday.  The goods were - she liked the way kyle was progressing.  she liked that we had worked on goals and kyle was achieving them.  the not so goods were - she said that kyle was developing a bit of torticollis.  He leans and turns his head to the left most of the time.  He also is not showing enough core strength - not where he needs.  and one last bit of news that i did not love - kyle is not reaching out for toys or holding on to toys that are given to him.  She explained to me that these are not great concerns yet or anything - they are just things that kyle really needs to work hard on this month.  By June 6th - our next appt. - he needs to be looking to the right as much as the left and with ease; reaching out for toys and pushing up on his elbows during tummy time.  Kyle has to achieve these to be able to sit or crawl or hold he head up.  

this therapist is amazing.  she is so on top of things with kyle.  I have only been doing kyle's stretches and massage since friday on his neck and already he is looking to the right when I carry him around.  Likewise I have only been doing his tummy time therapy since friday and he pushed up on his elbows today on own his during tummy time.  We are working on reaching out for toys and these will be our focuses for this month.  as well as continuing to work on bringing his legs up to play with toes, fetal position, lots of stretching and massage.

Sarah - this physical therapist is so encouraging but also tells what she feels like is the truth.  I asked if since we see him developing on a curve now and progressing and growing can we expect that to continue.  She said yes and no.  (who knew!)  the yes was that we can always expect kyle to learn and continue learning.  the no was that she said I have to remember that as we grow we are expected to preform tasks that require a higher and higher level of thinking - thinking with greater complexity.  There is no way to tell now how this will go.  the examples she gave me - I see kyle kicking his legs and he looks so much like perfect little 11 week old with no brain injury at all.  so I just assume that crawling and walking will come.  she explained in very interesting detail how much more than just muscle it takes to walk.  also I see kyle tracking so well now but sarah commented that tracking objects and tracking fast enough to read with good reading comprehension is a different story.  It makes it sound like she is what john and i like to call "negative nancy" but that is not the case at all.  we had a great conversation.  

I think that I just keep waiting to get to the place where all the doctors are checked off, all of our milestones are met, we are caught up and ready to go.  Sarah very quickly reminded me that this will never be the case.  Just b/c kyle is tracking now - he is too young to tell if he has any injury that will cause him trouble in tracking and reading so we will work on it.  just in case.  and the pressure of having to make some milestones this month to look towards walking in the future really is hard to balance with everyday living in joy.  please forgive my rambling - I am really having a hard time processing this.  I am hoping that some of you out there will give your 2 cents to me.  The thought that kyle might not achieve ANY ONE of these goals I think is actually inconceivable to me.  I do not understand how to process it.  I know I don't have to right now.  right now is for working hard.  I guess what I am getting at is I am having a hard time just sitting in the "now".  Working like crazy now - in case he needed it in the future.

Sarah shared stories with me on friday of kids she has worked with some that do amazing and some that do not.  lots for me to process.

Sarah is great though - brilliant really.  and I am very pleased with kyle's progress during his workouts - play time - therapy - whatever we want to call it.  We have to do this 3 to 4 times a day.  So every 3 hours includes:  1 bottle, burping and changing of course, infant massage, tummy time, several other various exercises that we mix and match, reaching for toys, neck stretches, as well as our arm and leg stretches independent play for exploration and then hopefully a 1:30 nap!  that part is just kyle and not me!  It seems like alot to me but I know from blog-land that there are SO many moms that are doing tons more - they are all an inspiration to me!

just one last thought - I now wonder if I have ever really let the lord take fear from me in my life or if it just always went away b/c whatever I placed my confidence in was winning.  B/c I keep looking for someone to say - okay - kyle's done - he a regular kid - I am realizing that this part of my fairy-tale isn't coming.  If I want to rest I will have to rest in the Lord.  no choice.  no other option.  

Therapy and Pulmonary Hypertension? - Kelly

We had our High Risk Pedi appt monday.  Kyle seems to be doing good.  She checked out his legs and (some doctors and therapist have been seeing some high tone in his legs.) and her thoughts were much like that of our primary pedi.  She said that she might feel some tightness in his legs but she really did not seem concerned about it.  she also got kyle to straighten his legs!  This is one area that our therapists have been wanting us to work on.  We are currently seeing an OT 1 time a week and then I do infant massage and our play therapy!  Kyle's therapy looks mostly like playing - we work on tummy time so kyle can learn to push up on his elbows and raise his head - this will strengthen his core and get him ready for sitting and crawling,   we rest in the fetal position so that kyle can get used to how this feels - b/c he was so early he does not naturally do this so he will get used to the weighted feeling on his knees and curl his core in instead of arching back - the arching is a CP thing and so we want to keep him from this movement as much as possible.  we also put toys on his chest to encourage him to look down instead of arch to see toys - we put a rolled towel under his bottom to encourage him to bring his feet up and play with them.  this helps sensory and mental development too - all that stuff they put in their mouth especially hands and feet is great for them in learning (at least when they are this little!)  we also work on holding onto  toys, lots of stretching after after massage time - and there are several more - we get to use a big exercise ball and a bumbo for core strengthening. and of course we do lots of songs with movements that stretch and cross the midline.  these are kyle's favorites - he like anything that is communication oriented rather than the physical exercises!  the tummy time is really hard work for him!

Some days I worry about what I am seeing from kyle and other days I am so optimistic and think that we don't need this much therapy each day.  But - either way - it can't hurt him and I know early intervention is the best thing.

Kyle has not been weaning off his oxygen the way we thought he would.  He is now 13 pounds - almost 3 times what he weighed when he was discharged.  So last high risk pedi appt I told the doctor that I thought he could be weaned and I wanted to get a pulse oxygen monitor so that I could start monitoring that at home and wean him.  She did not want to give me one - she said they are hard to read and that she did not want me relying on one.  I told her I had stared at one for 4 months and learned how to balance what the number said with how kyle looked, the circumstances, and make an educated decision about what was going on.  well she still did not want to give me one but I kept pushing and I got one.  so I did some investigating and what was happening is kyle does great off his oxygen for about a bit and then he starts to have de-saturation episodes - the longer he stays off the lower the de-sats go and the closer they get together.  so when i told he these symptoms for kyle she said it sounds like pulmonary hypertension which is where the pressure inside the lungs is greater than the pressure in the rest of the body. It also has something to do with the 2 sides of the heart - a low pressure side and a high pressure side.  (lots of info to take in in one sitting)  I know there is much more to this and I'm sure we will find out more as we have our upcoming appointments.  

it seems like sometimes when I just start thinking - wow - we are done with all these doctors - we are about to be normal - something comes up - I learn so much from other moms and kids that I read about online and so I feel somewhat prepared for things that will come up but others around me that are not in this situation want to be positive and so they are always saying things like "that won't be him", "he's going to be fine", "he is just perfect", i think they just assume like I do when I am only looking at kyle that all seems perfect.  but then I come out of that shelter sometimes to see others and realize that when you are shoved out of a perfect environment of a womb and into saran wrap and an incubator at barely 1/2 way through your creation time there might be problems.  It is also hard to balance this with trusting that God will grant my petition and restore his brain to perfection!

on one hand accepting God's will - the great things he has planned for kyle's life sounds like a good decision - displayed for us in his word.  and on the other hand - asking until I get what I want and being persistent and asking God to change his mind if that is what it takes - also seems like a good idea - and displayed for us in scripture.  or maybe just mabye these two are one in the same.

and I wonder why my head hurts at night!  anyway - I have gotten off topic....

we will be doing an echo of kyle's heart with out him being on oxygen.  this will let them see if he is having pulmonary hypertension.  then we will do a sleep study to see if kyle is infact having miniature apnea episodes that his monitor is not picking up.  then we will se a pulmonologist and he will talk to us about what is up and where to go from there.

so that is where we are!  Kyle is doing great!  He is happy - had great awake times - coos and is starting to babble.  he makes the "g" and "r" sounds and gurgles... all of these are milestones that he is meeting ON TIME for his corrected age!

Our next big milestone is to be up on his elbows.  He is 11 weeks yesterday.  this is an 11 week milestone.  i can not remember for the life of me when my other kids did this!  anyway I am not paniced!  i know that in addition to this great info of milestones - kids are individuals and i know that they many times developed mentally or physically faster - so if he does not pop up on his elbows this week we will just know that he is brilliant and gifted!

I have a friend who on her blog always praises her son for what a hard worker he is.  and I always wondered how she knew that or what really she meant - b/c they are so young.  but I know now.  Kyle is a hard worker too - he so sweet about trying to work during therapy and does even seem to have a good attitude about it!  He puts up with infant massage several times a day and with me stretching and even loves the singing - which I can guaranty is not so good!  so all that to say i am proud of him.  and he is a hard worker.  I am also learning how to be thankful to God for how he is healing kyle.  I've had a hard time with being thankful for God healing something that I asked him to save us from in the first place.  I am also so thankful for the other moms that put themselves and their kids out there to be an encouragement to moms like me.

Kyle's Baby Dedication - Kelly

Sorry – our Internet has been down for a couple of days!  Wow – have I needed to update!

The CD Release party was amazing – I think this one was even better than the first one!  John, of course was amazing!  The music really was great – I can’t wait to see how this CD is used!  We decided to dedicate Kyle at this week’s CD release.  That went great!   I wanted to have him dedicated at this church b/c of a story that I might not have shared yet… so hear it goes…

About a month before Kyle was born john started leading worship at WoodsEdge Community Church.  He was mostly out at the Montgomery campus.  (they have several campuses in their church).   John and I attend a home church that has been held in our home for a couple of years now.  We love it and this is our community.  These are the folks that we do life with – John started with WoodsEdge as a job – but this church just somehow grows in your life to more than that – you will see what I mean in a minute.  We had been wondering how to provide community to our five year old.  A group of fellow followers of Christ that are his age. (sounds funny but we really do contemplate these things).  So we decided we would go to WoodsEdge the Woodlands campus so that Jadon could be a part of a community of followers too.  It didn’t hurt that they were going to have the most amazing children’s pastor in the world on staff either!  So we decided to go one Saturday night when John was leading at this woodlands campus.  It just happened to be the Saturday before Kyle was born.  Pastor Jeff was teaching on … actually I don’t know what it was on but here is the short version of the story… He had just gotten back from a mission trip where he and his group were taken to a girl’s side that was almost dead.  She was non responsive lying on a wooden dirty floor.  She had been like that for a long time.  Weeks I think.  I am probably forgetting half the story by now but Jeff said that they prayed for her.  They asked God to heal her.  Jeff remembered hearing animals go crazy outside as they prayed for her healing.  Her father happened to be the local witch doctor or chief of the tribe – something very high up. Jeff left the building after a bit and went downstairs – a bit confused as to why she had been healed – They wanted to get her to a hospital to help her but knew the father would not okay that – several others stayed upstairs praying.  Soon jeff saw her walk down the stairs!  Now when I heard him say this – I was going down my check list… there were others there, he is the pastor of a great big church, I know people that know him – He can’t be making this up…  and this is all coming out of someone who says she believes.  Doubt and skepticism tried to take over – but I knew he was right.  I knew his words were true.  They prayed and she was healed.  The ended up convincing her dad to let them take her and she had malaria I think.  She was close to death and would have died.  The prayed and God healed her.  I was moved by the story but it wasn’t more than a story to me until Monday morning came.  I can honestly say after I left john and they were wheeling me in and painting my stomach and counting the surgical tools I was laying there SO GRATEFUL that I was part of a family of believers that prayed and God healed; that believed and would pray.  I KNEW that when John would contact Gregg – his pastor at the church – the whole church would pray.  Their church body was comfort to me right then.

So I thought it fitting to dedicate Kyle in that church.  Honestly so many of you prayed for kyle I think we could have dedicated him anywhere!  John put together a video of Kyle’s miraculous life so far and played it during Kyle’s song (number 7 on the CD).  That was great too!

There were so many people there – Amy W, one of our night time primary nurses was there.  The first time Amy had Kyle she scared me to death.  She didn’t sugar coat much.  She told me how sick he was and how critical his situation that night was.  Sad to say I can’t remember what was going on.  As I called through the night – actually I made john call b/c I was too scared to hear what they had to say at that point still – she would give the same report – he was stable but she was very honest about the concerns for kyle at that point.  Little did I know Amy would become very dear to my heart – someone that God had given me to lean on.  We quickly realized that Amy was a perfectionist – she did it all and did it right.  She was always prepared for everything – nothing caught her off guard.  From drawing blood – to bath time – to kangaroo care – to weaning.  She is good!  One night I was changing into my kangaroo care outfit in the nursing room and accidentally overheard some nurses talking about one of their pregnancies and how if she could just get to such and such week then she would feel good – one of the other nurses commented that if she delivered before that she would want to do away with the baby.  She would not want it to live.  Now before any of you get all hot and bothered – you have to know what these people see EVERYDAY!  You cannot judge her.  And when put in our situation I’m sure her thoughts would change. But – the point of the story is when I came out of the room – being that they all knew me and knew kyle was a 23 weeker – it got kind of awkward.  I don’t think of myself as sensitive.  But that hit hard – I began to question everything that night as I held kyle – I cried several times – tried not to be obvious – but wondered if I was being stupid to hang on – or worse yet cruel to kyle.  Again – be careful not to judge as you read this b/c I am about to be really honest. 

I always thought that the “Christian” thing to do is fight for life.  Never pull the plug (for a crude phrase).  That was God’s decision.  But when you are there – looking at your little one that you have been told will have 0 (did you catch that… ZERO) chance at quality of life – you start to think twice.  I wanted Kyle to live.  But I wanted him to LIVE.  I did not want him to live with zero quality of life.  I wasn’t even sure if I wanted him to live with 5% chance or 20% chance at quality of life.  Sorry – this is gut honest.  It is easy to talk about having faith in this instance – I sure did – but it is different when you are there.  There is a blind trust that comes over you for the doctors as you see them fighting for your baby’s life.  That trust was hard to gain with God.  I felt like He had already let me down.  He wasn’t doing what I asked him to do.  You would think that we are professional Christians - faith in crisis should come easy!  I heard other moms say that if they can just smile at them that will be enough or they don’t care what he is like if he can just come home – or if he will just live.  I didn’t feel that way – I don’t know how to explain my feelings I just didn’t and I was scared to DEATH at why I didn’t.  I really am glad that the Neonatologist did not get a chance to visit with us before Kyle was born b/c if I had heard the statistics that John had heard I am not sure if would have wanted kyle to live.  NOW I can see why we have to have faith and let God be the big picture – but sitting in the moment when fear had gripped my soul – I just cried and wondered – what am I doing?  I come and I hold him and I sing to him and I pray over him and I beg for his life and I bathe him – and all the while the nurses that take care of him (these that were in the conversation) think it is pointless – If it was their own baby – they would not want their child to live.  I just thought – surely they know something that I don’t or that I am not willing to see.  But again I will say – don’t judger her b/c 1.  She is not a mom, and 2.  How many of us have spoken and then thought “open mouth, insert foot” and 3.  They do see horrible things that I’m sure they would not want their own child going through.  But back to Amy – that night she asked me if something was wrong – at first I said no and then she asked again later.  She said I just didn’t seem like myself.  So I told her that I did have some questions – so I told her what happened and I asked her if john and I were doing the right thing?  Were we being cruel to kyle.  Was there any chance that he could live a happy life?  Could he even be normal?  Could he go to school or college or do math or get married or think or reason or hold a job?  And Amy – with the most genuine honesty I have ever heard told me that if kyle was hers she would do what I was doing.  She could not promise me the future but she KNEW and she stressed that – that john and I were doing a great job and what we were doing and how we did it would make all the difference for kyle.  She spoke life into me that night – I will never forget that and like with all the nurses there – how do you ever repay someone for a gift like this.  I know it is their job to take care of babies in the NICU – but these women (and a couple of men!) went over and above – I watched them think and study and come back and rethink and work endless hours to help kyle.  Kyle was Amy’s first primary even though she has been a nurse several years – they have a special bond.

So to see her at the CD Party was great.  There were so many people there.  I would like to begin sharing some stories of how others have touched me in my journey with Kyle.  There have been so many people – I could never list them all – but as they come to me – I would love to share them.