On My Mind

EDITOR'S NOTE: This post originally appeared on Finnian's Journey on July 29, 2008. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Today was a pretty uneventful day in Finn's life, although he did experience his very first earthquake! He slept through the entire thing, though, while the other kids were freaking out and I was herding them all under the dining room table.

***

I realized today that I don't feel angry anymore. When Finn was admitted to the hospital and had to have surgery, and especially when he was officially diagnosed with Down syndrome, I felt incredibly angry. Michael asked me who I was angry at. There was no person whom I was angry at, I was just angry at the situation, at the unfairness of it all - unfair to me as a mother to have this baby I wasn't prepared for and felt ill-equipped to deal with, and in all honesty for being cheated out of having the "perfect" baby I had expected, unfair to our family for all the ways this would all affect everyone over time, and most of all, unfair to Finn himself for not being given a healthy body and a "normal" life. Yes, I was angry - furious.

I don't think I feel angry anymore, though. Sad? Yes. Scared? Yes. But I've fallen completely in love with my baby boy, and the anger is gone. I love his sweetness. I love how he smells and how soft and warm he feels. I love how he molds perfectly to me when I am nursing him. I love his fuzzy head, and how he has a tuft that perpetually sticks up on top, reminding me of a rooster. I love how he furrows his little brow and looks like a grumpy old man. I love how he loves to be wrapped up tight like a burrito. I love his eyes that are the most beautiful shade of blue. I love how he lets me kiss him all over.

It's getting harder to even remember life before Finn.

***

Not a day goes by that someone doesn't tell me "Special babies are given to special parents . . ." or "Everything happens for a reason . . ." or "God doesn't given anyone more than they can handle . . ." With all due respect, none of that makes any sense to me. Every baby is special, and "special" babies are sometimes given to crappy parents, too. And what possible reason could there be for our family to be given a child with special needs? To teach us compassion, or gratitude? I imagine whatever "reason" people think there might be, it has to do with some lesson we're supposed to get out of it. But where does that leave Finn? Is he just a sacrificial lamb in this scheme? And as far as people not being given more than they can handle, well, come on, folks, what about all the people that go postal? They've obviously been given more than they can handle. I believe that I and my family can and will handle this, as I believe that most people find strength under challenging circumstances that they didn't realize they had. We're not special. We're just an average family with ups and downs, with virtues and faults, just like most other families.

I say all this without bitterness, and it's not my intent to debate whether there is a god or not. Everyone believes what makes them feel able to get through this life. Me? I believe it's all purely random. Sometimes good things happen to bad people, and sometimes bad things happen to good people. I don't believe that Finn was "given" to us for any reason. I do believe that there will be lots of lessons that we'll learn by virtue of his being our son, but I think that's just an incidental result of a random thing that happened in our family. If I believed in God, and if I believed he was responsible for this, then I think I would have more reason to be angry.

***

My friends continue to rally around us, and I still have been unable to find the words to express the depth of my gratitude. We are still being brought meals. I thought it was just through the end of July - and that would have been more than enough. But I was informed a couple days ago that my MOMS Club, as well as some friends who aren't even a part of MOMS Club, have worked out a schedule to continue bringing us meals through August. I feel uncomfortable with all this generosity, but extremely grateful. Last night my friend, Robin, stopped by with a basket of fruit and homemade bread as well as a bag full of breakfast stuff and a beautiful blanket for Finn embroidered with his name and birth stats. My friend Jen came over today with her girls and brought lunch and while she was here and I sat nursing the baby, she put together my new stroller. Judy brought us homemade chicken and dumplings for dinner tonight.

My friends lift me up. I don't know what I'd do without them.

Apparently, I'm a Pollyanna

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on November 3, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!

Not My Proudest Moment

EDITOR'S NOTE: This post originally appeared on Genetically Enhanced on August 20, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Let me first set the stage for this incident...

• It was Sheridan's first birthday.
  
• Also, on that day, I found out that Sheridan's early start services will (potentially) no longer be covered by the State of California due to a change in the Lanterman Act that now requires ALL persons receiving assistance related to a disability to first use up whatever your insurance will pay for. And I found out that even if those services are not the same quality, or have a longer wait list, etc. etc. we still cannot get the services he is entitled to - needs! - with the same therapists who have expertise in birth to three (I'm oversimplifying here, and every person's experience will be different depending on their insurance coverage).
• So I found out that I will have to fight both our early start regional center AND the insurance company at the same time to ensure Sheridan retains his services (doesn't everybody know fighting a war on two fronts is disasterous?).
  
• AND I found out that the speech therapist who told me Sheridan was ready for weekly ST did not request that in her report. Because "he's so young, we've never requested it for anybody his age before, he'd be the first." So, they are letting his chronological age determine his services rather than his developmental readiness? So, I had a rather, um, assertive conversation with her.
• And the shot in my rear end the doctor gave me to help with my severe back pain was wearing off as I was caring my 19 pound son on my hip.

So, with all that in one day, I'm at a local store and...

A man likely in his mid-twenties was behind me in the checkout line. He commented on how striking Sheridan looked.

++++++++++

He's really cute. And there's something really different about his look. He looks exotic.

Oh, thank you!
His eyes are really interesting. His features are really neat. Is he exotic?

[Okay, not sure exactly what he meant by all this exotic talk, but whatever.]
Well, he has Down syndrome and maybe you're noticing some of his unique features?

Oh, wow. So is he retarded or what? You know, how they are all retards?

No more f***ing retarded than you.

++++++++++

Sigh.

I told you it was not my proudest moment.

No matter how exhausted, no matter how frustrated, no matter how difficult being an advocate is at any given moment... it's the life we all live, breathe, sleep, eat, and LOVE.

And I feel like I let Sheridan down. I feel like I let people with special needs down. I know I let myself down... I really struggle sometimes with giving myself permission to not fight every fight.

But I feel it is my duty, my right, my heart's desire, my son's need that I fight. So I'm really regretting that I let my gaurd down and got so defensive on this one. This man's comments came from a place of ignorance, and I have the ability to at least try to fix that.

I still don't know exactly why I had the response that I did (although I do have a sarcastic streak). Maybe I was being the quintessential Mama Bear protecting her cub. Maybe I was just angry that somebody called my son a retard on his first birthday. To his face. Maybe I felt ganged up on after all the other stuff that day. But we all face "stuff" everyday, and will face plenty more and bigger "stuff" in the future.

I just feel the need to apologize. So, I'm sorry for letting my community down. And I'm sorry for letting Sheridan down.

I know I have a lot of fight in me. I know I'm a strong advocate for both my son and other people with special needs. I guess I just need to work on allowing myself to not feel that every fight is my responsibility.

Stolen Embrace

EDITOR'S NOTE: This post originally appeared on The Unknown Contributor on March 16, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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“Do you want to hold her?” The nurse asks me. I do want to, but I am nervous. She is very ill now, deeply poisoned by an army of invisible creatures. Her body is so weakened that it has been skipping and faltering. There is a zigzag of wires and tubes connected to her, all feeding her body something it needs to survive this. There is a gaping hole in her flesh just above her stomach, where the stitches surrounding her feeding tube have slipped out. Through the hole I can see her dark red, almost brown, shiny stomach beneath the skin edge. I look away and face the nurse.

“Yes” I say bravely. I settle myself into the chair they have placed beside her metal and plexiglass bassinet. The hard, wide chair is set awkwardly close to the equipment because my baby’s lines don’t go far. I tuck blankets under and around me, trying to mimic the feel of a nursery rocker. It takes me a moment to drape a sweet smelling cotton blanket over me, arranging the pink-edged swath across me to form a barrier between my perhaps germ-infected clothes and my daughter’s fragile body. As I get settled, the nurse adeptly wraps up wires, moves feeders and medicine pumps, disconnects the heater, and scoops my child out of her bed into my waiting arms.

I study her beautiful face. She is so dainty with a rosebud mouth, tiny nub of a nose, and huge dark blue ringed eyes. I want her to smile or somehow indicate that she is happy to be with me, that she knows me to be different from the hoards of others who handle her but she is too sick for such affections. Her six and a half pound body feels very heavy to me. I realize that she is perfectly still, not breathing. Bile and panic rise in the back of my throat.

“She’s not breathing.” I manage to squeak out to the nurse who is hovering over us. The nurse quickly turns to consult the monitor screen. The numbers reassure her.

“She’s ok,” the nurse replies over my shoulder.

“She’s not breathing,” I say again louder with strong emphasis on the word not.

The nurse glances at the screen again. She puts her hand on my shoulder to soothe me and says, “She’s ok. It’s ok.”

A baby girl in our pod has died this morning. Infection, our shared enemy, destroyed her overnight. Not more than an hour ago I was with that mother and child as the mourning process began in the hospital’s small “family” room. That mother and I had passed a bit of NICU time together waiting on our daughters. She held out her baby, already dressed up like a little princess, and I accepted the bundle because no other reaction seemed appropriate.

It has only been a few seconds. The nurse trusts the monitors and she thinks I am having a reaction to the morning’s sorrow. But now I know what it feels like to hold a lifeless baby and this feels exactly the same. I am shaking from an overload of adrenaline in my system. I want to throw my baby into the nurse’s hands. “She is NOT breathing,” I hear myself shouting. My arms will not obey me and I cannot lift her up.

Finally the monitor corroborates with me and sounds the alarms. Immediately the nurse whisks my baby away, up on to the open bassinet, and begins to bag her with a portable mask and oxygen pump. I stare at the monitor watching for my baby’s return. It comes swiftly. The nurse assures me that Kimani is ok, that the apnea has passed.

It is not ok though, because now I don’t want to hold her anymore.

Connections and Retraining the Inner Snark

EDITOR'S NOTE: This post originally appeared on Only Who I Am on July 31, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I recently had someone at school look at E and say “is he down?”.
A lot of things ran through my head. Hm, is he down? Well, he was down for a nap, but now he woke up because two kids skipped by, talking excitedly. Is he down? No, he’s feeling rather chipper today, thank you. But I knew what she wanted to know – does he have Down syndrome? Do I just repeat the question for her using appropriate language, or just answer it?
In this case I said “Does he have Down syndrome? Yes, he does.” It was someone who works at the school and there was no reason I needed to burn a bridge there, or cause anyone embarrassment. She was asking because her brother had Down syndrome and she clearly recognized it on E’s face. We talked a little bit about her brother – he has already passed away, and it quite obviously still pained her, so we didn’t dwell on that. To me, in hindsight, it was grand to make a connection with someone associated with the school and have her know what a wonder people with Down syndrome are, because in my world, that’s one more solid brick in the foundation that is going to support my case for E attending the same school as his brother.
And just this week a young person looked at E and quietly said “My cousin had Down syndrome.” I didn’t know what to say, because I heard her hushed tone and the use of the past tense. Had he died? Why had he died? When did he die? And do I really want to get into this with a young person who seems very saddened by the subject? I honestly had no clue where to go with her comment. I smiled at her, because I did appreciate her comment, but I was at a loss, and did not take the conversation any further.
Since E was born, I’ve been busy stocking my arsenal of witty and snarky responses to comments I am expecting to get. Like the above comments to correct someone’s use of inappropriate language to describe his syndrome. Like when he does something clever: “He’s retarded, not stupid.” If he has trouble communicating or is not acting “age-appropriate” when he’s older: “He has Down syndrome, what’s your excuse?” – or my favorite, which is on a t-shirt that made me hoot with laughter the first time I saw it: “It’s called Down syndrome, you f*ing retard!”. (I am crossing my fingers that I will someday be lucky enough to receive sentiment this as a sweet, adorable subversive cross stitch, replete with hearts and yellow-and-blue DS ribbons as a border, from a friend of mine. Since she already knows about it, it’s not a secret wish, right? Nor am I fishing by posting it here, right? Cheryl? Right?)
Truth be told, I would probably hang it in my closet, which is my own little private sanctuary (no comments about being in the closet please. Ha ha, you’re all hilarious). It still makes me giggle, but it’s a bit too brash for me to display for all to see… plus I have come to realize that at this point in E’s life, most everyone who comes in contact with him just thinks he’s a darn adorable kid. Which he is. There are people who feel very sorry for him – most notably my mother-in-law (grr)* – but the majority of them don’t bring it up or even talk to us. Maybe they see him and think “oh, that poor mother and her retarded son”. If they do, they don’t say it to me, and that’s just fine. I think that the rude comments must come years down the road, when children learn to be cruel to one another and to make themselves feel bigger by belittling others. By that time, you’re not standing by your child all the time and mostly won’t have the opportunity to spout venomous witticisms at the offenders. (Besides: the comments are being made out of ignorance and low self-esteem… so what good is a venomous witticism, anyway?)
So I am working really hard to silence that inner snark, that nasty little defensive creature within me who wants to say something biting and sarcastic, because, well, that snark’s not getting a lot of business. Everyone who actually says something about E’s extra chromosome is usually doing so because they have a child with DS, a relative with DS, or a friend or co-worker with DS and they have something positive to say to me. That, my friends, does not deserve snark – it doesn’t even deserve the defensive posture I always pull myself into when someone mentions his syndrome. It’s a lot of work to permit myself to be open to others who have something to say about who he is. Slowly I am realizing, though, that all they are trying to do is create a connection with me, to say “hey, I’m familiar with this and I want you to know that”. Usually it’s because the person who creates that strand between them and me was or is a special person to them. This is why I’m working hard to be open to what they’re saying and the connection they’re trying to create, because those connections – those strands – are lifelines. They’re love. They are what is going to pull me through the times when I’m saying why me? why my kid? why my family? .
Or, they may be the start of a glorious new friendship:
Setting: Target. Scene: check-out. Cast: E, on Jo’s arm, peering out over her shoulder. T holding my hand. Large Black Man (LBM) flirting with E from behind Jo.
(I only mention the color of the skin of the stranger in this setting to paint a more detailed picture – and because it is awfully rare for us to be approached as a family in a Target by a tall, burly Black man.)
LBM: “Aw, how old is he?”
Jo: “6 months.” (smiles)
LBM: “How’s he doin’?”
Jo: “Fine?” (slightly confused quizzical look)
LBM: “Oh, I’m sorry, I’m just asking because I have a son with Down syndrome who’s 18 months old.”
Jo: “OH!” – proceeds to have a very nice conversation with him and pass along information about our parent group we go to -
We regret not giving him our home phone number. In hindsight, we aren’t sure why we didn’t – perhaps because we’re midwestern and we don’t think of just handing out our contact information to complete strangers?
Yes. Connections. Hush, snark. I will work to beat down the defensiveness and open myself to the connections, even if it means that I am opening myself to the potential of being hurt at some point. It will not be the overwhelming response to my (wicked cute) son.

* my mother-in-law, after visiting and spending maybe 3 minutes all told holding her grandson, went home and told Jo’s aunt that every time she looked at him she got “so sad thinking about how hard his life is going to be”. I can’t wait until he proves her wrong. CAN. NOT. WAIT. OK OK I know she’s of a different era, one in which people with Down syndrome were institutionalized, had life expectancies in the 20s or 30s and often spent their days engaged in mind-numbing activities in a sheltered workshop because that was the option available to them. She is an intelligent woman, though, and she does not take the time to educate herself on how people with Down syndrome live today, and chooses instead to just feel pity for her grandkid. Needless to say, we send the grandparents information to Jo’s aunt instead of to her mother.

Mama Bear, Mama Bear, What Do You See?

EDITOR'S NOTE: This post originally appeared on Down Syndrome New Mama on September 7, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.

Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.

Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.

Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.

Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.

Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)

Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.

Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.

Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot.

Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.

Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.

Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.

So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.

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

EDITOR'S NOTE: This post originally appeared on Raising Reid on December 18, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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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 his 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!