Thursday, December 24, 2009

Merry Christmas From Our Home to Yours!

Merry Christmas.....from our home to yours! I hope everyone has a wonderful time with family and friends!

We spent our Christmas Eve morning enjoying a tradition Luke started 4 years ago. Our sweet 89 year old neighbor next door "gifts" Luke some of his loose change from time to time. Four years ago Luke received a huge bag of change from Andy around Christmas time. Later that day without saying anything to any of us Luke snuck tissue paper and tape into his room and wrapped up several "packages" of loose change. He then announced that he wanted to give these packages to the homeless. So, four years ago he started a tradition of putting packages together that we distribute Christmas Eve morning. It was such a beautiful morning as we drove about to find our "friends". A few years ago there was someone we had given a package to that stuck out in Luke's mind, so we went back to that particular area to see if we could find him...and we did. I think he was surprised when Luke called him by name to wish him a Merry Christmas. As we drove about it felt so good to know that this was something our son had instigated, and I could only imagine this being something he does with his own children some day.

Below is Luke putting change into little baggies that he then put into Christmas stocking type bags...he also added some granola bars, water, and toiletries.

Reid enjoyed the morning too.....but was ready for a nap so he could be all rested up to go to his grandma's this evening....and then wait for Santa's visit!

Friday, December 18, 2009

A Conversation Between "The Me Then" When We Just Learned of Reid's Diagnosis and "The Me Now"

When we received Reid's diagnosis three years ago on the day of his birth 12/28/06, I wanted so desperately to know about things that were absolutely impossible for me to know at that point...I wanted to know if we were going to be okay, if he was going to be okay, would he die because of his heart defect, when would he walk, would I love him the same way I loved Luke, how was this going to affect Luke and what would their relationship be like, will he have friends, will he be invited to birthday parties, would Reid be able to go to the same preschool Luke went to, would I always be sad that he had Down syndrome, how would this affect my extended family, why me, why us?

Back then there was just no way I could have had answers to any of those questions, the only thing I could do was put one foot in front of the other and trust that all would be okay as I inched forward and learned about this new world I was placed into. However, now that I am three years out I have some of that knowledge I was craving for. If I had been able to have had a conversation with the "Me Now" back in those first few days or weeks and given myself a pep talk or straight answers knowing what I know would have looked something like this.

The Me Then: They just told me Reid has Down syndrome, this has to be a mistake...I keep waiting for the doctors to come tell me they just checked the blood work and there was an error, but no one is coming in here and telling me that, everyone looks so sad. Why aren't they telling me it is a mistake??

The Me Now: Cheri he does have Down syndrome, in a few weeks you will have some tests run to see if he has a type called Mosaic but the answer is no, he has the traditional form of Trisomy 21.....but it is okay, you are going to be okay, I promise you. People in the hospital are quiet and seem sad because they don't know how to respond, and they are trying to let you digest the news I suppose.

The Me Then: But, no one has even asked us his name or congratulated us other than family

The Me Now: Sadly, you are going to find that most of your new friends you will be making who also have a child with Down syndrome experienced this same thing when their child was born, it is another thing you will have in common. But, you are fiesty and though you can't imagine it now at one point you will speak with hospital staff to make sure things change. In a few months a book is going to be coming out called Gifts written by moms who have children with Down syndrome and how much their children enrich their lives....your mother-in-law, fiesty in her own right ;), is actually going to become the "Gifts Fairy" at the hospital she is a labor and delivery nurse at....she purchases these books in bulk and keeps them in her locker and makes sure families are given these when a child with Down syndrome is born there....she wants to make sure no one has the same experience you had and wants to make sure these families know right away what blessings their babies are.

The Me Then: A cardiologist just came in the room and said they were going to take Reid down stairs for a chest x-ray and echocardiogram...what is going on?

The Me Now: You will soon learn that nearly 60% of babies with Down syndrome are also born with a congenital heart defect. Your cardiologist is amazing and is going to take good care of Reid....he is going to come back in here and tell you that Reid has two holes in his heart and a defective mitral valve. What this means is that Reid will need heart surgery to correct these. Reid will need to have surgery when he is 7 and a 1/2 months.....and don't freak out on me but he will actually need a second heart surgery just before he is two as there are some complications with his mitral valve....but he comes out of both surgeries just fine. At this point I can't tell you if there is a third but he is doing great and no longer requires any heart medicine.

The Me Then: How is Toby going to handle this?

The Me Now: Cheri, seriously how can you even ask this...remember it is Toby that you married, the man with the biggest heart you have ever met. Toby is already 5 steps ahead of you in accepting this. Do you remember when you were dating and you were sitting out front of your house in his big red truck...and you asked him where he ultimately saw himself in his career in the coffee industry and he responded by saying he wanted a coffee roasting facility where he could employ people with disabilities? Well, today with Reid's birth and diagnosis a new course has been set and that dream is realized for Toby and your family in Maranatha Import Export and very soon he will be able to bring on their first employee with special needs. In a few days from now you and Toby will discuss that dream and how amazing it is that that was on Toby's heart long before you two even knew you were to be married let alone know that Reid would be in your future. Toby will whisper to you, "We need to move forward with that dream, because Reid and his friends need jobs some day". You will both cry and hold each other, but deep inside you both know that something bigger than you is being set in motion.

The Me Then: What about Luke...will he be disappointed that his brother has Down syndrome? Do we tell him right away or do we wait?

The Me Now: Luke is so amazing with his brother, he is perfect for Reid. You and Toby decide not to tell him for awhile, actually you don't tell him until right before Reid's first Buddy Walk at 9 months. You were afraid it would burden Luke and worry him, in a way I think you were protecting him by wanting him to love Reid wholeheartedly before you gave him the news....but even if you had given him the news earlier Luke would of still felt the same way about Reid....absolutely crazy about him! In fact Down syndrome doesn't bother Luke in the least, he actually acts like he has met a movie star when he sees someone else with Down syndrome and shouts out to alert you....umm yeah, you might want to talk to him about that one. ;)

The Me Then: What about our families, how do they handle it?

The Me Now: Well, let me put it this way, when you first bring him home from the hospital and a neighbor tells you they heard the bad news about Reid's diagnosis your father-in-law steps in and says, "No, there's no bad news here, this little guy found just the right family and we all have a lot of love to give him". And that is the case, your families love him and are excited with each new milestone he achieves. Early on your family asks you what they can do, if they can bring dinner, if there is anything you need... and you decide that what would help you the most is if they each read the book Babies with Down syndrome so they all had a resource on Down syndrome and knew what you were dealing with. You purchased the books and gave them out as late Christmas presents. You had the book too, but your mom is amazing and when she came over one day she brought something up she read in the book and you realize she is way farther ahead than even you. And your mother-in-law, she sees to it that you are stocked with every book on Down syndrome out there and purchases the most beautiful sign language cards and kit to get you started for when you and Reid are ready. No, no need to worry about your have the most incredible extended family and support, not to worry a bit.

The Me Then: Will I always feel sad?

The Me Now: You will feel sad for awhile, you will actually feel a lot of very tough raw emotions and my best advice is to let yourself feel them, it is a natural part of accepting this diagnosis for your son. But, I have to tell you that you are mostly feeling these things because you are scared and don't know what to expect for yourself or for Reid. But no, you will not always feel sad. In fact, you will find yourself saying at one point, "If I knew then what I know now I would not have shed a tear". As I am writing this to you with knowledge of three years under my belt I can confidently tell you how much you love and adore this little guy and there isn't room enough for sadness. Though you feel so sad about his diagnosis now, you will soon see that his extra chromosome becomes a non issue....he is such an incredible blessing Cheri. You are about to gain a new perspective on life as a result of this diagnosis, you are about to become a stronger, more loving and compassionate you....a better you.

The Me Then: One thing that is making me sad is the fact that Reid won't go to the same preschool that Luke goes to....and we love it so much. It makes me sad that Reid won't have the same experiences as Luke.

The Me Now: Again, your assumptions are based on the unknown, remember you don't know a lick about Down syndrome yet! But, good news is.....your little Reid does go to the same preschool Luke did. You actually shared with Luke's preschool teacher right after Reid was born with tears in your eyes that he won't be able to go there, her response to you was, "You never know....". She reminds you of that on the first day of school as Reid wandered in to sit with the other kids and she gave you a big, "See, he did it hug".

The Me Then: When I look at him it is hard for me not to see the Down syndrome, will I always feel like this?

The Me Now: In about a month you are going to meet a family who also has a child with Down syndrome. Their child is a few years older than Reid and they will tell you that there will come a point that you will not even see the Down syndrome. You come to find this to be true as well a few months out, in fact you find it amazing when people come up to you at Disneyland or the grocery store and mention they have a neice or nephew or friend with Down syndrome and you wonder how they knew to say that to you.

.....I need to throw one other thing in, there comes a point where you find such beauty in Down syndrome, the features that once scared you you find absolutely adorable. In fact, I am not sure when this occurred but even though Reid's nickname is Bubbas you always greet Reid with arms stretched out and by saying, "Hiiiiiiiiiiiiiiiiiiii beautiful!!!!!". No, you don't see Down syndrome, you see Reid...and an absolutely beautiful little person that you feel so incredibly lucky to call your son.

The Me Then: Is all of this my fault? Reid was an invitro baby and I am feeling so guilty that maybe I brought this on?

The Me Now: Cheri, no invitro had nothing to do with it. It is a genetic fluke that can happen to anyone. However, you come to believe that he is not a fluke at all. Do you remember going through the process and praying that if you were to get pregnant that God would choose who you were to trusted then that He would choose the child you were to have and you have to choose to believe that now as well. Your infertility specialist confirms this to you in a few ask her the same question and her response will be to you that she can't explain why he made it and not his twin who you carried early on. She told you the only way she could explain it was that he was suppose to be here.

The Me Then: This isn't how I pictured my life, I don't know how to be a parent of a child with special needs.

The Me Now: No one pictures this for themselves and chooses least not at first. Cheri you will fall so in love him with that you don't care about his extra chromosome and you wouldn't want to change a thing about him. You will be so in love with him and his friends that it will absolutely break your heart when you learn that babies in other countries born with Down syndrome are cast aside, put in orphanages and institutions where their outlook is grim if not adopted. Seriously, you who is laying here so heavy hearted and worried would choose this again, you'd choose Reid and his extra chromosome all over again, and you'd adopt every baby out there in those orphanages if you could. And, interestingly enough most of the people who adopt children with Down syndrome already have a child with Down you are about to learn what others parents already know, these babies are not burdens as society may indicate they are beautiful souls with so much love and life to give to this world.

The Me Then: Will I love Reid the same way I do Luke?

The Me Now: Cheri, I completely understand that question because I think it is more common than not to wonder if you could ever love another child as much as you love your first....but if you are asking me that because secretly what you really want to know is if his extra chromosome and the hurdles he will have to overcome will in some way inhibit you from loving him as much as Luke........then without hesitation my answer to you is, No, no way, you absolutely love him every ounce as much as Luke, so much so that at times it takes your breathe away. Your little Reid, the baby you have in your arms who is just hours old is actually going to teach you so much more about love and depth and beauty than you can even imagine at this point, but trust me.... he is an amazing teacher, and ohhhhh soooo cute!

The Me Then: Will he be invited to birthday parties?

The Me Now: Yes. The truth is he is actually invited to more parties in his first three years of life than even Luke was. He is also really popular around Luke's friends....when you are out on the playground after school picking Luke up, Reid tootles along and gets hellos, high fives, "knuckles", and hugs from so many of the kids. He gets a lot of positive attention and this little ham of yours eats it up.

The Me Then: I will really be okay with this?

The Me Now: Yes, so much more than okay.....go snuggle your new love and take a deep breath. The road you are embarking on some might call the road less traveled, but the ones who have gone before you will tell you, as I am confirming now, that it is beautiful..... enjoy the view!

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Sunday, December 13, 2009

A Christmas Angel On Our Tree

We have a new angel ornament on our tree and his name is Andrey, he is just precious. He is one of many little ones who have been placed in orphanages because of their extra chromosome. I look up at him on my tree and I just sigh every time I pass by knowing he doesn't have a mom or dad to love him. He looks like such a combination of my boys. I learned of Reece's Rainbow Christmas Angel Tree Project last year but it wasn't until this year that we participated. Earlier in the month I pulled up the site and told Luke to look through and see if there was a little one he thought we should support. Right away Luke picked out Andrey by saying, "Awwwww, Mom I like this little guy!" in the sweetest of voices. I had actually seen him several times as well and felt the same way so that was it, we sent off our money and we received an ornament with his picture on it. A few days afterwards I went back to the site to check on Andrey to see if there happened to be any information on him. There was some information regarding his health but what got me the most.......was when I noticed his birthdate. Insert watery eyes here. This precious little boy was born on the exact same day and year as Reid. They will both be three on December 28th. It got really personal for me at that point. The last three years have been so heightened for us as we've navigated this new road. It has been full with therapy and surgeries and adjustment and much love and snuggles and laughter and just so much joy. When I think of this sweet Andrey being born that same day with such a different fate, well it makes me just cry. If you have thought about sponsoring a child please consider this sweet little one or one of his friends found here. The deadline to receive an ornament with the child you sponsor is Tuesday December 15th, though you can still sponsor a child up through December 31st.

Saturday, December 12, 2009

Change In Plans & Feeling Contemplative

Well, this evening we are suppose to be at one of our favorite Christmas parties of the year....and this year's theme is Polar Express where all the kids come in their jammies and listen to the story read by the host, and then Santa comes with toys for everyone. But, our boys are both under the weather so unfortunately we needed to keep them home. So, my alternate plans? out the fridge and freezer...somehow this just does not compare to getting all dolled up and heading out for Christmas cheer and celebration. What a bummer!

Well, with this unexpected opening in my evening and with the house being quiet with feverish kiddos and with the rain tapping outside on my windows I figured maybe I would use this time to put a few thoughts down that have been swirling around in my head. I have been thinking a lot lately about Reid's upcoming birthday. Reid will be turning three in a few weeks, so hard to believe on so many levels and yet I am really glad to be here, three years out. Don't get me wrong, I love the baby stage and savor each milestone and I actually love diapers...I'll be sad when diapers are gone forever around here..... but somehow Reid turning three is just so sweet for me and I have been feeling very contemplative and reflective lately on those early days and very raw emotions we experienced. I am working on a couple different posts and hope to share in the next few days... so many amazing things actually happened those first few days after Reid's birth that I have not shared yet on my blog that we took as signs that we would be okay, and, of course three years later we are so much more than okay!! But, I am working on sharing those stories....

Until then, here are a few pictures from earlier in the week when my guys were feeling better and decorating some Christmas cookies.

I just love to see the love these two boys have for eachother!!


Sunday, December 6, 2009

Nooooooo, MINE!!!!!!!! Celebrating 2 Word Sentences, Even If They Are These 2 Words :)

In speech therapy we have been focusing on getting Reid to string two words together. This has been slow going getting him to do this consistently on his own. However, this morning he clearly said, "Noooooooooo, MINE!" while whisking a book away from Luke. Hooray......we'll take it, even if it is a phrase that poor Luke probably would have been reprimanded for had he been the one to say it :). But, for Reid, we'll take those two words as a celebration! This means something is triggering and perhaps we are on the verge of several two words connections....

Wednesday, December 2, 2009

I Can't Believe It's Been A Year... Heart Update

I can hardly believe it was a year ago today that our littlest guy came out of the operating room looking like this.... For those new to our blog, this was Reid's second open heart surgery. The first was to fix an ASD, a VSD, and his mitral valve when he was 7 months old. The second surgery, just before his 2nd birthday, was to further repair the mitral valve which had some moderate to severe leakage. The surgery seemed a success at first but then things went a little south and it was thought he would need to go back into the operating room for surgery # three to replace the valve altogether with a metal one before he would be released...which quite possibly could have caused more complications and more surgeries down the road. However, long story short (or read here for posts from that time) over a course of several hand wringing days his swelling and excess fluid had dissipated and they decided to send us home to see if we could get a few more years out of his own valve before needing to completely replace it. But............ drumroll please...........I have not updated on his heart (shame on me) until now and as of last month he is now completely heart medicine FREE......AND his last echo showed a near perfect heart. The cardiologist said that if he keeps on like this there will not be a need for another surgery. Makes this mom's own heart very, very happy!!

Reid's surgery happened to be scheduled on Toby's 40th birthday.....which means TODAY is his birthday.....Happy Birthday Toby! We love you!

Below are pictures of what his little "zipper" looks like today, Reid in his "I did it" shirt because it just seems appropriate, and then him just being his little hambone self!