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 now...it 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 family...you 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 have....you 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 days...you 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 it....at 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 syndrome....so 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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27 comments:

ds.mama said...

Great, great, super great post. Wish I had read it two years ago.

My name is Sarah said...

This is Joyce. Cheri, this is just beautiful. So well written. This would be a great piece for new parents to read.

I am especially moved about the coffee shop discussion, and before Reid was even born. Amazing:) You may already know this but my husband and I hired our first employee a few months ago from the same job training program that Sarah attends and it has been such an awesome experience. I met her parents a few days ago and they said she is like a new person since she got this job. In this meeting we talked about how it takes folks who understand to make employment happen. It took us until Sarah was an adult to see that we had an opportunity to give. You and your husband are already so ahead of that. God bless you and good luck with your venture.

Heather said...

I am speechless Cheri.Truly speechless.I cried as I read so many parts of this conversation.Your father-in-laws response to your neighbor was a clincher ... I was a mess from that point on.Each snippet was filled with such raw and pure honesty and partnered with such wisdom and hope.I am beyond blessed to call you friend.I am beyond blessed to have you so close by,although we don't take near advantage of that as we should but one thing I know for certain and that is this: what a absolute joy it will be to watch our two little ones grow and blossom and we,right along with them.

Beautiful post from my beautiful friend about your beautiful and perfect boy.

Mel said...

A very moving post. Thanks so much for sharing :)

DownTownDan said...

Oh wow, this is my favorite post you have ever written. Everyone should read this.

Bob said...

As a friend who visited you and Toby in the hospital the morning after the delivery, I remember that Cheri. So very glad you wrote this for yourself as well as others.

Julie de Jong said...

Oh Cheri, how I wish I would have read this earlier! This is an amazing piece of writing--there is such courage and hope here and it all points to your trust in the One who never makes mistakes. This is a real life-"feet to the pavement" kind of testimony. Awesome.

Tara said...

Cheri,
Can I post this on my blog with a link to yours? This is incredible and I am a sniveling mess reading it! I think every new parent should have access to this. Maybe you could print it out for your MIL to slip inside the Gifts books?

Cheri said...

Hi Tara of course you can. Sorry you are sniveling ;).

Dina said...

What a wonderful perspective. The tears are flowing. I agree, this needs to be handed out to new families. So positive. So true. And what a wonderful family you are surrounded by. I may have come out of my fog sooner if I had read this 17 months ago. You really got to the core of it all here. Thank you.

Bethany said...

Oh, I love this!

Carolyn Allen said...

You are a masterful writer Cheri. The Lord knew exactly what He was doing when he loaned Reid to you and Toby.

Monica Crumley said...

Cheri, this is really beautiful and amazing words that should be shared with moms handling a new diagnosis. I'm going to pass this post on to several new moms I've recently met. Thank you for taking the time to write this. We're only 2 years out and I agree whole-heartedly with every word and emotion. Preschool is still ahead, but so far, we are encouraged that John Michael has a special place at that same preschool as our other 3 kids. I love reading about your husband, too. What a heart! My husband, too, seemed several steps ahead of me at that very difficult early stage. Thanks again! I so hope to meet you guys one day.

Anonymous said...

Cheri,
I do not have a blog...I have a 15 month old daughter w/DS and have been reading a few blogs (yours being one) since she was about three months old. Seeing you and your family early on in my journey gave me comfort.....on the days I just felt so alone or scard I would go to your bolg, see your happy family doing "normal things" and I would say to myself "it will be alright, look at this family."
This post you just wrote has brought me to tears and I have not shed those in about 4 months! It is so touching and acurate for probably several moms out there! Thank you for being so honest and sharing. Andrea Wiley, Lompoc CA Ps I have reached a point were I would like to start a blog, so I can connect w/you and other amazing families!

Cheri said...

Andrea......thank you for leaving a comment! I felt the same way as you, I just craved to see other families doing "life" and seeing that they were okay and that they were happy it gave me so much encouragement and fuel for my journey. I am so glad you found us, I would love to follow when you get your blog up and running. Please feel free to email me at tlcforeman@verizon.net if you need any help setting it up, or if you just want to connect :).

Heidi said...

I just love this post! So many of the questions and worries you had I had too. Amazingly my worries are no longer the same and I love Joel more than I ever thought I would or could.

It never ceases to amaze me how much God cares for us and how he prepares us for the things to come. I loved your story about Toby and his desire to hire people with disabilities. I also loved your story about how Reid was meant to be here.

Thank you so much for sharing this with us!

Kele said...

Absolutely amazing Cheri, I soooo loved this post. Best of all, I have no doubt it will serve so many Mama's well, I can see from some comments that it already has. Well done sweet friend, well done (and beautifully said!!!)

onlywhoiam said...

absolutely lovely post. I am right there with you on the school thing. My first and greatest sadness for my little E was that he wouldn't go to the same school that his big brother goes to. Even in his one short year I have made so many connections in the school to people who believe that there is no reason at all that he should not be part of our school community, for preschool and potentially beyond (it's a preK-8 school)... I am heartened and hopeful, and always amazed at the attitudes I encounter in people.

Each person I talk to in the school who offers a positive comment feels like a point of light, and between them and us run these brilliant threads like a beautiful web to support us. And, while you may not be at our school, your experience offers us another point of light. Thank you! Jen @ only who i am

Kelly said...

Cheri.......how wonderful is this post! Very well written, I love it! I am only 10 months into my journey and I am happy to say that I can relate to this on so many levels. I happened to stumble upon these blogs and was so inspired early on! Posts like this helped me through those very difficult early days. Thank you for being so selfless and for sharing your family's experiences. Very helpful and "hopeful" for us new moms! Everything will be OK! Thanks for sharing:)

Michelle said...

great idea! Isn't it amazing how far we come in our feelings and fears and thoughts? Loved how you wrote this!

Kurt said...

Cheri,

Your post moved me to tears. It was absolutely beautiful. You are an incredible woman, wife, and friend, but most importantly an amazing Mother. Merry Christmas!

Love - Cherrae

Cory said...

This was sooo touching to read. Your boys are just precious, and in many ways I feel like I am looking at my own son, River. Our boys look very similar.

Lisa said...

Awesome post, Cheri! I got here from Dan's new blog :)...I have been out of the loop recently and am trying to get back into the swing of things!

Anne and Whitney: Up, Down and All Around said...

I am so happy I stumbled upon your blog - this post is beautiful! you should definitely have your mother-in-law print this post and include it along with the "Gifts" book she hands out when someone in her hospital has a baby with Down syndrome. I wish I could have read this when our little Whitney was born, you put the same feelings I had into words perfectly! By the way - you have a beautiful family and Reid is adorable!!!

mlfont said...

Hi Cheri - just found your blog today and read this post. The tears are flowing freely. Just what I needed today! All of these things are heavy on my heart and hearing your comments today looking back are comforting! Our 4th child, Parker, came w/lots of unexpected surprises. He is a true blessing. We haven't told our other kids yet and I enjoyed reading your comments on this too. we plan to wait until right before surgery. Looking forward to getting to know you and your family! Thank you for blessing me today!!!

Lara

greenmama said...

That was amazing! I am going through so many of those same struggles right now as our little guy is only 3 months. I know that Mitchell will bless our family in ways that I never imagined but I am still having a hard time with the unknowns.

Llama Momma said...

This is so beautiful. And thanks for stopping by...good luck with the science!