Monday, October 4, 2010

31 for T21: A Conversation Between The "Me Then" When We Just Learned of Reid's Diagnosis and the "Me Now"

I previously posted this back in December right before Reid turned 3. As his birthday was approaching I began to realize just how far I have come in this journey which inspired this post.... I wanted to post it again during Down Syndrome Awareness Month in an effort to hopefully encourage someone whose child is newly diagnosed or to give a windows view into those first raw moments of hearing the words, "Your child has Down syndrome".

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 feisty 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, feisty 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 echo cardiogram...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!



Kelly said...

Oh Cheri, I LOVED this post the first time around and I really enjoyed reading it again!! So true, how far we have come in this journey.....a true testament to one's personal growth. Just look at how our blogs (and us) have evolved!!

Thanks for sharing this.....AGAIN=)

Wren said...

This is one of the very first blog posts I read and it helped me more than I can ever explain! It made me feel like maybe one day I'd feel that way or that things really were going to be okay.

Thank you so much for sharing it again! I'm in a different place than I was when I first read it but it never hurts to be reminded of how how truly lucky we are!

Adrienne said...

LOVE this!! And when I read what your father-in-law said to the neighbor, it brought me to tears! Thanks for sharing this again!!

Looking Up said...

Love it! I think we all wish that we had only known then (when our children were diagnosed) what we know now.......

Zoey's mom said...

Loved it then and loved it now.What a beautiful post for someone to read if they are just entering our world and ... I can't believe your little guy will be 4 before we know it!

Lizzy said...


This was an amazing post. Thank you.


Philip May said...

Thank you for sharing this. What a wonderful and creative way to share the fears and realities in one post. So true.

Andrea said...

Cheri..I remember reading this the first time you posted it. It did so much for me! Oh, how far I've come! xoxo

patsy said...

cheri, this is absolutely beautiful. it had me in tears because it is all so true...if we had only known the love we were in for :)