Poem for Dads who have lost a child......

Someone very special passed this along to me.  Loosing anyone close to you takes it's toll and continues to affect you for as long as you remember the experience.  But loosing a child and in some ways trying to stay strong and hold yourself together is something I think many dads do. Nobody asks dads to play this role and it in no way diminishes the support, strength and sorrow of mothers who have lost a child.  I've seen a lot of poems to address the experience either from a mother's perspective or from a generic parental role.  But this is the first I've seen that speaks to a father and they way he may feel.  I hope this in some way connects with other dads who might be able to relate.  This poem really struck a chord in me for many reasons and I just had to share. 

Five years old now.

  Five years ago today Colby and Avery were born.  The future was unknown, unsettling and at times a bit scary.  The weeks that followed their birth were extremely hard.  Avery's passing was numbing at the time and impacts me to this day.  Colby's challenges throughout the years have changed our lives. Yet through it all, there was one constant.....a strong little boy with the willpower to survive, the determination to overcome and to spirit to impact those whose paths he's crossed.


  This past year has been a wonderful year for Colby. He has adapted well to his mom and dad being divorced, having two houses and a change in routine.  The school remarked that had they not been told of the change in Colby's life, they probably wouldn't have known.
  He continues to conquer challenges.  He can now move pretty quickly up the stairs and step off of small steps on his own.  He loves to ride his hot wheels, has his letters mastered and is working on spellling.  He will repeat preschool this year to allow him a little more time to get stronger on his feet and continue to catch up to his peers.
  His gait has always been a bit different.  Within the past 6 months, he has started to run.  It's his own style, his own speed and yes, it's still a bit unsteady.  But now he prefers to "run" at just about any chance he can get, always challenging me to a race from the car to our front door, from the living room to the bathroom......just about anywhere he can.

  A couple months ago, he participated in a children's race.  It was a simple loop around a high school track.  He lined up with other children his age.  The gun when off and he stood there are first, not knowing what to do.  The other children all took off down the track.  I stood next to him and told him it was time to go. His eyes got big and he quickly replied "Oh! OK!  Let's go daddy! Come on!" and off we went, his arms flying about and his feet shuffling quickly down the track.  He was 100% focused at the task at hand...to run his first official race.   Colby was watching the track so intently as not to trip or stumble that he really wasn't paying attention to what was happening around him.  As Colby and I rounded the the end of the first corner, I looked across the field to see the group of children making their way to the finish line.  Colby was breathing heavy, his cheeks were red, his pace had slowed and he started to stumble and swerve.  I told him it was OK to walk and catch his breath but he wasn't listening to that.  A minute later he looked up and noticed that there weren't any other children around us.  We were alone on the track as we made
our way along the back straight away.  At first I my heart sunk, thinking he would be heartbroken to realize that the other children were so far ahead of us. But his perception was quite different.  He let out a strained giggle, looked up at me and said "Look daddy!  We're winning!!!!"  With renewed sense of motivation, he picked up the pace, breathing heavily and swerving down the track.  As we made it towards the finish, I heard the announcer say "Wait, there's another runner on the track!"  People came back to the finish line and cheered Colby through the end of his first race.  He received a medal as did all the other finishers before him, but to him this signified that he won his race!

  I think that's a classic example of who Colby is.  He's a fighter.  He is motivated.  Sometimes he's not sure of how it all works, where he should go or what to do, but with a little help, he's off and running.  And although he may finish things at a different pace than others, his is a winner....in his mind and in mine.

  My life with Colby marches to a bit slower pace than other parents of 5 years olds.  But the past five years have reinforced the belief that sometimes you cannot change what has happened, you can only affect how you react and what you make of it.  Do it right and things can actually turn out pretty good.  It's also solidified the belief that you should be thankful for all that you have, not taking anything in your life for granted. 

  Thank you Colby Nichols Reed for all that you've brought into our lives...into my life.  Thank you for the joy you've shared and the lessons you have taught me. You are a very strong, intelligent and inspiring little boy.  You have overcome so much and have an amazing future ahead of you.  I hope you read this some day and realize the impact you have had on me.  Happy Birthday Colby!

                                                            

Forever changing....but still the same.

(Colby's Preschool picture. Fall 2011)

(Don't mess with the masked avenger! Thank you Aunt B for the cape and mask!)

(Colby at his 4th birthday party getting ready blow out his candles.)

(Colby in daddy's new apartment decorating the Christmas tree)

(Colby and grandpa Jud "doing cheers")

(Colby and Grandma Carole at grandma's going away party)

As with most things in life....the one constant is change.
The last year has brought many changes in Colby's life. After 15 years of being together, Tracey and I have decided to get a divorce. We are very amicable and remain very good friends. Colby is doing fine with the transition. A couple months ago, I went over Tracey's one day to pick him up, Tracey and I were talking when Colby came into the living room. He looked at me and said "Dad, no, you need to go home. You're not married any more!" Haha. Yup, he says what's on him mind!
In the beginning, he asked a couple questions about why he had two houses now. Our answer were and continue to be simply that mom and dad have gotten a divorce, but we still care about him and we're still a family. He seems very comfortable and content with those answers.
My apartment is on the second floor. So Colby now has 13 stairs (trust me...we count them just about each and every time we come home! LOL) that he's had to go up for months now and this has been a blessing in disguise. It's helped his little legs get stronger. He's still a little small for his age so for a while, the average step was above his knee. He's seemed to have hit a little growth spurt. That coupled with months of practice and he's now getting up and down the stairs much more quickly. As in our years together, Tracey and I continue to be very lucky in the way we work together with Colby. I'm very thankful for that.

Colby's CVS was getting better for most of the summer. He went months without any episodes. But the last couple months have brought some changes. He has been having more frequent episodes, sometimes more than one a week. He is old enough now to recognize that he's not feeling well and will often ask to lay down in his bed. A couple times he's slipped quietly out of the room, crawled into his bed and pulled the sheets over his head. When asked what he's doing, he replies "I'm not feeling well daddy. I feel kinda sick." 20 minutes later, he's back out, playing with his toys, singing and back to his old self.
As I write this entry, I look down to see him on his couch. He had an episode again tonight and actually threw up. He gets upset sometimes when he vomits. I think he's just frustrated with it and getting sick isn't fun for anyone. I asked him why he was crying and he said " It's 'cause I throwed up all over my shirt and I really like this shirt!" That's a typical Colby kind of answer.
His episodes now are quick and he seems to bounce back sometimes within just minutes. When he first started having them years ago, he would be out cold after the episode, unable to be woken and would then sleep for the remainder of the day. Looking back at those times.....well...this isn't too bad.
We have an appointment in a couple weeks to have him checked out again. Sometimes the increased frequency of the episodes has been an indicator that his shunt isn't working quiet right. I'm not sure this is the case. In the past when his shunt malfunctions, he goes downhill quickly. It may just be that he needs to increase his medicine. I'll hope that that's the answer.

Grandma Carole (my mom) and Grandpa Ron (her husband) have been a very big and important part of Colby's life. They recently moved to South Carolina. Like with many adjustments in Colby's life, he asks questions, processes things...but takes it all in stride. Colby and I are looking forward to our first plane ride in a couple months when we go down to see grandma Carole and grandpa Ron! Grandpa Jud (my dad) and Grandma Vikki (his wife) continue to play important roles in Colby's life and we're so very thankful for all four grandparents!

We have long wondered about Colby's depth perception. Whenever he would come to a change in color on the ground, or a defined line....like a door jam or a large crack in the side walk, he would stop, look to hold onto something and very carefully explore the ground in front of him. When playing catch, he seems to have no concept of when to close his hands or when to move his arms to get the approaching ball. It inevitably passes his hands and whacks him. Again, in typical Colby fashion, he usually remarks "ooops....that's OK dad. I'll get it!". He's bend down, get the ball, toss it back and then put out his arms ready to give it another try.
So we brought him to an occupational optometrist where he failed all of the depth perception tests. It wasn't much of a surprise and in some ways, more of a relief that he had a direction to take to address this latest challenge. He's been to an therapist once so far where he's been given a patch to wear a couple minutes each night, alternating eyes. The doctors and therapists seem to think that this is something Colby will be able to overcome in time.

Lastly, Colby will most likely repeat preschool again next year. Last year's experience was wonderful. But he was still playing a lot of catch up, had just started walking and the whole school experience was new. Because of his history, he got into preschool a year early. This year he is doing wonderfully. But his teachers discussed with us the option to have him repeat it again and allow his motor skills to continue to develop, allow him to grow and get stronger before he enters kindergarten. Given the wonderful progress he's made in the past two years, Tracey and I felt that it would be a good option to pursue.

Change is something that you cannot avoid. And as with many things, how you deal with change will affect the outcome and dictate whether the change resulted in something positive or not. Colby has been through a lot in his short life. In some ways, his journey has aged him beyond his years...making him stronger and more insightful than some other four year olds. He was presented with challenges that, based on statistics, might point to a rather bleak outcome. Tracey and I vowed four years ago to support and empower him to do as much as he possible could in life........ and look at him now, he's a normal little 4 year old......a smart, curious, strong willed, witty, loving little boy. I believe strongly that the people in his life have played such in important role his Colby's outcome. Although some of the recent changes in Colby's life have moved people around a bit and thrown in some new challenges, the support and devotion he gets from his parents, family and friends remain the same. And that's what's most important for him.

"Daddy, I'm a big boy now...cause I'm four!"

(St Patty's day parade in Hartford with Grandma Carol)
(Driving daddy's boat. July 2011)
(At camp with Grandma Vikki and Grandpa Jud. July 2011)
(Fishin' with daddy at camp. July 2011)
(At camp with Grandpa Jud. July 2011)

(Of course....put the dinosaur on top of the lobster....makes complete sense!)


(Helping daddy cook. February 2011)
(Making snowmen with mommy. January 2011)
(Having fun with daddy at camp. July 2011)
(Pushing his running strolling while out for a run with mommy. August 2011)
(He and his friend Kaitlyn at his birthday party)
(Mommy, Kaitlyn and Colby. His 4th birthday party)


Yes, our little boy recently turned four years old. The past 9 months have been very good for Colby. He's had relatively few issues.
He loves his preschool and daycare. He's made some friends there. The kids seem to be drawn to him. Colby tends to be quiet, in the background watching and taking it all in. He'll often play contently by himself. This isn't to say that he's antisocial or doesn't play with other children, but more often than not, he'll start off on his own until he's more comfortable.
He's doing very well with his walking now. He gets around like a champ. He's very flat footed, which seems to cause issues with his balance. We may end up exploring some sort of brace to help correct this while he's still young. Balance and depth perception seem to be his main hurdles at this point. If he comes up to a line in the ground, it's almost as if he isn't sure if it's two levels or not and he'll often stop and slowly test the area beyond the line carefully before he proceeds. We have seen notable progress in his balance. He has inserts for his shoes that help correct his flat feet. It used to be night and day between when he had his shoes on and when he went barefoot or in sandles. His balance was always better with the shoes and the inserts.
Recently, Colby has started to become much better on stairs. He still goes very slowly and at times, needs to rest. But again, we see notable progress there as well.
When it comes to his vocabulary and ability to understand and process things, he's amazing! Friends, family and his teachers often comment on Colby's understanding of things. He often seems to understand much more than your "normal" 3 or 4 year old.
Some people have commented that he's like a little old man...both in what he says and in his mannerisms. LOL And we agree. He makes little grunting sounds sometimes when he gets up or picks something up. His gate is a little unique when he walks sometimes. We think it's cute.
Luckily, we haven't had any issues with his shunt in some time now! That's a wonderful thing! There's always the possibility that he will, at some point, no longer need the shunt. But the only way of knowing is for him to continue without any issues with pressure in his head and then we can only assume that things are working properly. He's very aware of his shunt and calls it his "spout" sometimes. We're not sure where he got this name for it but we chuckle when he refers to his "spout" and rubs the area on his head where it starts down to his belly.
On another positive note, he's Cyclic Vomiting Syndrome (CVS) seems to be getting better...or at least he's going through a very good spell lately. Now I write this blog as he's lying in bed having an episode. But he hasn't had one in over a month and now only throws up once every couple months. Sometimes we can see it in his eyes. He won't eat much and will be quiet. Sometimes he'll break out in a sweat and get restless and eventually fall asleep. But it's better than the spontaneous vomiting and passing out that he had at the beginning of his diagnosis.
Many people continue to ask us if he'll outgrow the CVS. Like his shunt, we just don't know. So we've learned to live with it and make the best of things the way they are. If either of the two issues become a thing of the past...well then things will just be that much better!
So now Colby is four years old! He got into preschool a year early and will repeat the year starting tomorrow morning. He's a happy, vibrant little boy. He continues to be a happy, easy going little boy.

Getting big!

Our little boy is growing up quickly. He's conquered walking. He'll say he's running, but for now it's a fast walk with his hands held a little ahead of himself. Sometimes he reminds me of a tall stick with something balanced on top. If you let the ball start tilting forward a bit, you need to quickly start moving in that direction to keep the stick under the ball. That's what happens when Colby runs. He likes to live life on the edge and is just of the cusp of letting his body get ahead of his feet. All along, he'll be talking...rambling sometimes about whatever is on his mind. Sometimes it's what happened that day, sometimes it's what mommy or daddy said. Or he'll count, sing a song or just hum a tune as he wanders aimlessly back and forth, down the hallway to his room, spinning around, then back to the living room only to pop his head in the doorway to say "Hey guys, whacha doin'?".
Preschool is going very well. He loves his friends and teachers. He goes from preschool to daycare and rides in a green van. He loves to tell us stories about the green van. We also know if he gets talked to in school because he'll tell on himself. "Mrs M said "Shhhhhhhh Colby....in da wibrawy today." Or "yeah...I cwied today at school." Then, just as quickly as that thought popped into his head, he's off on another story or off he goes on a mission to find his little toy train.
.
He hasn't had that many cyclic vomiting syndrome episodes. He'll go through periods (like a week or two) when he'll have a lot, then he'll go weeks without any or with just a few. We think the episodes are getting a little less severe. There are articles to say that kids can outgrow the syndrome. We hope that's the case.
He's old enough now to get the whole Santa concept and tells us that he needs to tell Santa to bring him toys. We decorated our tree the other day. He saw all the lights light up and he gasped "AWWWWWW!!!!! I see da wites!!!" He's loving the candy canes and is very excited to see if Santa brings him any toys. We'll have to wait and see. : )

Big steps!

So....what's new? Colby is walking! This video is a bit old now. I'll need to take more video as he's progressing so quickly. He took his first steps a couple weeks ago and hasn't turned back. He's been cruising for quite a while, so we knew it would only be a matter of time until he would be walking. It's amazing to see how quickly he's gaining confidence and strength! He still has trouble if he falls in the middle of a room because the only way he knows how to pull himself up is if he has something to hold onto. But he's working hard on that too. He has a "running" voice, or I should say breath. When we tell him to run, his little legs move a little quicker, but he breaths loudly and quickly, kind of like a dog panting. Then when he gets to wherever he was going, he'll let out a "phewwwwww".

Birth to Three is almost done as Colby turns 3 in a couple weeks. He got into the local preschool for two mornings a week which will be wonderful for him.

Apart from the walking, he continues to expand his vocabulary and develop his personality. He has a little sense of humor going. He's also starting to laugh at certain cartoons he watches which is really cute.

His cyclic vomiting syndrome has gotten better too. He still gets sick a couple times a month. There doesn't seem to be any rhyme or reason to it and his episodes don't last as long and aren't as intense as they used to be.

He's still wearing his glasses, though we've noticed that when he doesn't wear them, his eye isn't turning in as much. His glasses have been sat on, twisted, dropped, had all kinds of food smeared over them and right now seem to be holding together by a thread. So we'll need to set a new eye doctor's appt for him and see what's next.

So that's the scoop. I continue to look back at how far he's come. I just can't wait to see all the new things that he'll surprise us with.

Little Chatterbox

(Colby brushing daddy's hair)

(Ut ow...road rage at 2 and 1/2)

(Beep...beep...)

(Colby amazed and delighted when he found a leaf!)

Colby may not be walking...but boy is he talking!

His language skills are just taking off. It's so neat to see his personality really starting to come out as he can express himself with words now and at times repeat more than we would like him to. It melts me to hear his little voice call my name or call Tracey. He refers to us as "mommy" and "daddy", but every once in a while, he'll say "Twacy" or "Cots".....Tracey and Scott. He'll be in the car, I'll put Dave Matthews on and he'll say "Yeah daddy! Dave! I like it!". He'll also do his best to mimic some of the song lyrics. If he can't get the words, he'll hum the tune.

He is also becoming a bit of your typical two year old and now has a Time Out spot in the living room. He'll scoot himself over into his time out spot on his own sometimes and start talking to himself. "Colby....time out......let's talk.....no hitting...". After he's been in time out, Tracey will say "OK Colby,let's talk...why are you in time out.....". He puts his own accents and emphasis on different syllables and words sometimes that makes it all the cuter.

He's also doing pretty well with his counting. He can count rather consistently up to 7 now. He's working on his colors and usually does pretty well with Red, Green and Yellow.

His vomiting has mellowed out lately. He'll get sick maybe once every 3 weeks or so and the episodes seem to be a bit shorter than before. For a while it seemed like he was having about one a week. Some of the information we've read states that it can get better as the individual gets older. So that's what we've hoping for.

He is progressing with his walking. He still depends on one of us to put our hands out so he can hold on, but you can feel that he's much more stable, using our hands to correct himself much less often than before. He's also working on cruising around a table or anything else he can stand up next to. He's very unstable and unsure of himself. I think he's very capable of cruising more, but just lacks the confidence to move more freely.

He's due for another CAT scan to see how is ventricles are doing. Just a routine scan to give another benchmark and ensure things are the way they should be, though he shows no signs otherwise.

Colby is now 2 1/2. Birth to three has been seeing him ever since he come home. We now have a visit planned with the local preschool so that they can come and assess him to see if he will qualify to get into their program. I guess a child needs to be delayed in two or more areas. I think the only area that he is delayed is his gross motor skills as he's not walking. But i don't know enough about "normal" 2 1/2 behavior to really understand where he is. It's an odd situation because no parent wishes that their child has delays and needs special attention. But in Colby's case, we want him to have as much support, stimulation and care that he can get. So we really hope he gets into this program as it's right in the elementary school in town and has a great reputation. I guess they will come out in a couple weeks, take a look at him and I guess this will then determine if he'll qualify or not. We'll just have to wait and see.

He's not potty trained yet, though he'll tell us if he's going to the bathroom. We'll hear him tell us "I poopin" or "doin' pee-pee". So we'll need to tend to that pretty soon.

So I guess that's all the good news for now. We change the clocks this coming weekend and look forward to bringing him outside more. The cold and flu season will soon be behind us and we count our blessings that we made it through another winter relatively well.

I'll so what I can to try to take some video of him talking and put it up here before too long.