Tuesday, September 20, 2011

don't compare them. don't compare them. don't compare them.

 This post is hard to write, yet one that I find myself unable to press forward without expressing. These past few weeks I have been struggling. Yes lack of sleep, yes trying to figure out a new tiny person, yes hitting survival mode and holding on for dear life...but the root of my struggles go far deeper than that.

The first baby placed into my arms, making me a mother, has an extra chromosome. With that extra chromosome comes a lot of different labels, one of the harder ones to swallow being "mentally retarded"

But as a new mother, once I overcame my initial shock of the diagnosis, I welcomed my extra chromosomed baby into my life with arms ready to operate her g-tube, feet determined not to trip over her oxygen cord that stretched the length of the house, eyes that saw only her beauty, ears that rejoiced in her babbles and never worried that it never turned into actual talking.

She was my normal. She was all I knew. I rarely thought of the mental retardation label or how different her babyhood has been because to me, she was a genius- every act that she completed was appropriately celebrated- she was perfect and just the way she was meant to be.

Enter into my life a brand new baby. Carter. A very average, normal baby.

When he lifted his head off of my chest and stared me in the eye when he was only a couple of hours old, I almost had a heart attack. Babies can do that without months of therapy? When he flipped his strong body into a roll over for the first time last week, I was even more amazed. When I saw him scoot forward in his crib the other day, I shook my head and wondered what I had gotten myself into.

He has already "accomplished" more in his meager 2 weeks of life than Addison had in her first 6 months (he can breathe and eat...so he already had her there)
I find myself subconsciously comparing them. I know I'm not supposed to do that. I realize that makes me a horrible mother. But I have found myself to be wrapped up in a bit of normal baby shock.

All of a sudden I realize, what exactly I missed out on with Addison. All of a sudden, her delays seem loud and glaring whereas before they were merely part of her uniqueness. I see the way that Carter looks at me with such clarity whereas Addison's gaze leaves me wondering if she's comprehending anything I say. I see how strong he is and I joy in the act of nursing my baby. I cuddle him and love on him and remember that at this point in Addison's life, I still wasn't allowed to hold her. He holds with a tight grip onto my finger while he eats, sucking with such ease. I worked nonstop with Addison for FOUR MONTHS to get her to be able to sustain herself by drinking from a bottle. When he wants something- he screams a bloodcurdling, over-the-top dramatic scream and waves his arms desperately. Addison's lungs were so compromised that she never truly screamed and her cries were weak and short lived.
For the first time, I realize how truly different Addison is. And that realization hurts.

She is almost 20 months old and yet she is still getting several bottles a day. She's not talking. She's not walking. She refuses to sign. She is very much like a baby still herself, her achievements belying her age. She is very delayed, and I'm noticing in a new way everything that she should be doing.
And yet, the more that I have pondered this, the more I know that this doesn't change how I love her. It doesn't change the extreme fierceness of my love. My protective nature towards her hasn't faltered.

It just seems like now I can step back and see her the way perhaps the world sees her. I envision the slowness that I'm now seeing creeping up into her girlhood, her teenage years, her adulthood...and it hurts.

Because to me she will always be my perfect Addison. Her almond eyes, rosebud lips and button nose scream gorgeous perfection. Her giggles and face swallowing smiles are the light of my life. But seeing it-really seeing her slowness...breaks my heart. Because while I know that it doesn't take away from my love for her, I worry how the world will treat her as she grows. I worry what this means for how functional she will be as she grows. What if she never talks? What if she can never truly take care of herself?
The pain from her original diagnosis from two years ago has come back to haunt me...in a weird way.

I hold no regrets in everything I've done for Addison. I would do it all again because she is worth every little thing that we went through to sustain her through her very difficult first year of life.

But now I remember why I was so scared of Down syndrome. After all, isn't this every mother's worst nightmare? Isn't this why they're coming out with new tests to tell sooner and abort faster? Isn't this why 90% of women with this diagnosis choose to eliminate the unwanted fetus?
Carter has come into my life as a flash of bright color. He has shown me how it is supposed to be- and I have only known him for two weeks. Addison is a softer color that has crept into every part of my life in a pleasant way and slowly changed the way I view the world.

The way I see it- my life needs both of these colors. The softer color will balance out the bright color. The bright color will bring out new hues in the soft color that I didn't notice before. They will both be better because of each other.

Even though the diagnosis and labels now scare me in a new way, I don't hate Down syndrome. It just happens to be part of who Addison is, but in no way defines who she is. Her amazingly unique personality can't be fit into any stereotype, and she certainly isn't any less worthy of life than any other child.

And I love her. All of her. She is seriously so amazing- she has changed me so much it's taken a year and a half of constant blog posts to barely scratch the surface of those changes.
Noticing the difference between my two children doesn't mean that I love either of them less. I love them both equally, but differently (is that weird?) I am thankful for both of them, and I can't wait to see them start interacting with each other. I can't wait to see him catch up to her and then push her to a new level of achievement as her competitive juices get rolling. I can't wait to see how they balance each other out in life...their respective colors blending together to create a happy sibling relationship.

I've noticed Addison's slowness in a new way, but I'm moving on. I'm not going to let this drag me down and depress me (the lack of sleep is doing that pretty well on its own)

After all, every child is different; every child is unique; every child is perfect. I wrote a book about it, remember? (My agent is currently has my book...I'm taking a maternity leave of sorts...in case you were wondering)

I love my two perfectly created children. My house is a bit like a circus these days as they are both crying and wanting attention at the exact same time. My nights are split into tiny chunks feeding my newborn and checking in on my big girl. I shed new tears over things that I thought were long ago resolved.

But I wouldn't change my life. I love my little family and I love my nurturing role.

Mother. Such a complex word....

22 comments:

  1. For me it's looking at old pictures or remember what Landon was doing and saying at Sutter's age. It's hard not to compare, and I honestly have gotten to a point where I'm okay with the comparison...it still stings sometimes but like you it doesn't change my love for Sutter.

    Just wait until the day they are playing side by side and laughing together - it truly is the most amazing feeling in the entire world!

    Sleep is coming soon I promise! :)

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  2. I have been reading your blog for a while now and have never commented-- I love it! I love how you express everything and I really look forward to your book. I had my first baby in June and I am so amazed at everything she does. I feel like it is all moving terribly fast and I might miss something if I look away for a moment. I agree with loving your kids the same but differently. They are different people who may need need different things in life but you love them unconditionally, no matter what. Thats all that is important. Good luck with everything!

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  3. Deanna,
    I hope you will not find this offensive but I often have some of the same emotions I think you are having when I think about mother. I know what you have experienced with Addison is by no means the same as caring for a mother with Alzheimer’s but when you compare and contrast “normal” vs. “different” the emotions can be very much the same. Mother is only 74 years old. Many of my friends and many people from my church are 74 years old and older but yet are living a much different life than my 74 year old mother is living. Many of my friends tell me about meeting their moms for lunch or shopping – talking to their mothers on the phone, their mother’s having them over for supper or calling and asking them for advice. My favorite is when one of my friends complains in great detail about their mothers. I really struggle with that. At least their mothers know their names, can change their own clothes, probably always make it to the bathroom, and remembers how to make their favorite dish. My experience with my mother is completely different. I do struggle and I don’t always think it is fair. My mother was the picture of sweetness and grace and now she is living with such an awful disease – a disease that will never be cured – things only get worse. So I appreciate your honestly and embrace your struggle. My mother is not like other people’s mothers. My mother requires constant care and is often afraid because she does not know where she is or what she should be doing. Despite everything, mother has value and purpose – God in His divine wisdom has brought this illness to her and her to me for care. I am not sure I have come to the place that I don’t wish things were different – I dreadfully miss my mother and the memories I have of her being so strong. I just know that for now, this is God’s plan and He makes no mistakes and with His strength I will care for her as long as God gives her life. But, no, she is clearly not like other’s people mother’s and that hurts!
    Aunt Becky

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  4. my first son, was also born with DS, couple months after my husband's cousin was born, so it was really easy to see their differences, my son couldnt sit and she was cruising. it was hard, but it got better with time, i dont compare them anymore because its tiring, and because there will be always kids around to compare, i like to see my son's beauty and ability over the things he cant do.

    now we adopted our daughter, also with DS who is 2 yrs younger than my boy (who is 6 now) and yes is inevitable to compare, is human nature i think, but again each one is unique, each one has strenghs and weakness, and i rejoice :)

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  5. comparing is natural and in no way makes you a bad mother...we all do it, though we know it's not fair to our kids, and anyone who tells you they don't is a liar.
    and just remember, a delay is just that-a delay...it's not a *never will do*, and babe, once Carter starts running around you're going to wish he wasn't! ha!
    and if you have to take care of Addison forever? then you take care of her forever...because you're the mommy and that's what you do...but really? most likely our girls will be in a group home at the very least having some independence...and I think that's at the very least...
    Because in case you didn't know? Our girls are going to set the world on fire...

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  6. Mother...as complex a word as our our roles! That was an amazing post, and though I don't know you, I think "horrible mother" could be nothing further from the truth. It is plain as day how much you love your children and accept them for who they are. Your feelings are real and although I am not in your position, I can only imagine that I would have similar feelings. You are doing a fantastic job!

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  7. Oh Deanna, you've got me crying. I admire you posting these thoughts and feelings for us. I've made some of these comparisons myself but I only have one child- my beauty with Ds. But I have wondered about these very things and how I will feel when we do have another baby. I think that your feelings are SO normal and really so wonderful. Yes, they are different and it's shocking to discover how much so when she is all you've known. But you do need them both and love them both, as any wonderful mother would. Which you certainly are.

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  8. So many Moms are going to be able to relate to this post Deanna. This was beautifuly written and I felt every word of what you wrote very strongly.

    I know it upsets me when I hear other Moms who are in a better place with the Ds diagnoses right now than I am being praised for just "accepting their child for who they are" because I accept mine exactly for who he is too...Just because I get scared sometimes or feel that tinge of sadness every now and then when I compare his development to that of a "typical" two year old...Doesnt mean I accept him any less than the Mother who does not struggle.
    We all know how much you love and adore Chubbs...Having these feelings in no way means you dont accept her for exactly who she is.

    We ALL compare...And it IS normal. The trick is not dwelling on the differences. I think you are doing an amazing job so far as Addisons and Carters Mom.

    Oh, and Russell and I are loving those little purple boots :)

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  9. Comparison happens. I'm constantly comparing mine and they BOTH have Down syndrome. My youngest talks twice as much as my oldest. My once-tubefed daughter will eat my younger, larger son under the table at every dining opportunity. One moves gracefully and swiftly without effort. The other constantly looks like he's recovering from a drinking binge.

    Comparison happens when you only have one parenting product point of reference. Just reassure yourselve that one day many of the behavioral milestones that carter so easily reaches will be biting you in the butt. And after finding yourself in a shrieking debate with a 2 year old who is gone into a tantrum because you unexpectedly required him to drink his milk from a red cup when the blue one was in the dishwasher, addison's silver linings will reveal themselves in merciful ways.

    You can fully recognize and acknowledge differences in your children and love them both to a painful degree. Love is NOT blind. Love is embracing every flaw and foible even when you feel them more intensely than anyone else.

    They're BOTH lucky to have ya.

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  10. You are doing a wonderfully amazing job with both your dear little ones! Even though I only have one right now, I imagine I'll be comparing him to his sibling (whenever that will be). I think that's totally normal and it would be strange if you DIDN'T compare your 2 children, extra chromosome or not. Addison and Carter are very lucky and blessed to have such wonderful parents!

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  11. such a good mommy deanna! I don't have another yet, but i imagine i will feel be something fairly similar to what you are experiencing since i look at my friends children who are similar in age or younger than camden and have far passed his capabilities and sometimes find myself cringing. it is hard sometimes, and sometimes crying is just as healing as smiling. addison was chosen for you and for carter, and although she runs at a slower pace, she is still running towards the same finish line that you are, and she will get there too. I can't even imagine the strength it is taking for you to be there for both of your littles right now...i truly am in awe that you can do it! and not just do it, but rock it. Congrats again on carter, he is beautiful...and addison will only help mold him in an even more beautiful way. Thanks for sharing your feelings, i know even though i'm not totally there yet, i can definitely relate. :)

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  12. I love you, Deanna, and I am very proud of you!

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  13. I think the comparisons are just a normal part of life. But what's so awesome is that you get to experience life with two beautiful kiddos, and that's something that 90% is truly missing out on.

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  14. I loved this post, i could really feel your pain and better than that I understand it, it makes total sense that this is a bitter sweet time for you as you see how hard Addisson has to work to achieve the same goals as typical children, for me things have been so much better since Owen started walking, I don't know why maybe its just a psychological thing or maybe things really are getting easier? Both your kids are goregous !!!

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  15. You know what's funny? I always compare my little girl to your little girl. (They are only 2 months apart) I always compare your mothering to my mothering. I know you don't me, but You inspire me everyday. Chubbs is amazing and so far ahead of so many children that have Ds. I love seeing all the pictures with everything Addison can do. When she eats (Klondike Bars) I compare that with Maddison who has never had one and I think, HMMM I need get on of those for her. I think everyone compares, it's what challenges us to be better! Thank you for always making me smile! Congrats on you new little boy!

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  16. I loved this post...it's so true. Now that we have Chase I see how effortlessly things come for him and wish it were that way for Emily, though I wouldn't change her at all. By the way, you are not a terrible mother for comparing the two. I think it's normal for the brain to want to compare in order to make sense of the world...like the way we know we don't like something is because we have seen something we like better...a comparison. I don't think your comparison is on purpose, it's just a natural part of your brain dealing with life in general.

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  17. Lots of people already said this, but I compare my kids with each other. It's actually really interesting to already be able to see how different they are even when they are still little. Neither of my kiddos have DS, but they are still so different in when and how well they can do certain things. I will never (unless God blesses us with a DS baby) be able to truly understand some of the feelings you describe here, but they honestly sound normal and not "bad". Actually, the opposite. I don't think a bad mom would go through some of the soul searching etc. that you do. So, don't worry about comparing, and wanting the very best for your babies. You're a good mommy.

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  18. I found your blog today and am so glad. I am the proud mama of four awesome kids, with the youngest being just 2 weeks old. My sweet little Caleb (or K-Love, as his 3 yr old brother calls him)has DS. I have been struggling with this in ways I've never imagined. Some days I don't cry at all but rejoice in the beauty that is my son. Other days I shed a few tears over his diagnosis and still other days I cry buckets upon buckets of tears over the hopes and dreams I've had to change because of the diagnosis. It's so comforting to know that my feelings are normal and I'm not a bad mom for having them. Caleb might have DS but it's not WHO he is and I won't let it define him. Thank you for posting your brutally honest, raw thoughts and making me feel better. Your kids are gorgeous. Go love on both of your miracles.

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  19. how honest and poignant you are. beautiful.

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  20. As I read your post, Deanna, the one thought that kept going through my mind is that Addison is one amazing little girl! As I have followed your blog since the very beginning of Addison's life, I have been continually amazed by Addison's strength, her will to accomplish things, her determination. She knows what she wants and she WILL find a way to get what she wants. This will take her far as she grows older. I really don't remember at what age babies/toddlers are supposed to be doing things, and I don't know any other children with Down Syndrome, so when I read about Addison and see pictures of her on your blog, I don't compare her to anyone. I just see Addison. Beautiful Addison! I see her as personality PLUS! I see her as a very busy, active, spirited, determined, special little girl! I am amazed by her and her many accomplishments. So, there's just one word that goes through my mind as I read your posts about Addison: AMAZING!! (I'm sure Carter will be an amazing little boy, too!)

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  21. I think the comparisons are normal. They don't have to be negative, just noticing the differences. You may think this sounds crazy, but this post, the comparisons, is almost why a 'typical' baby makes me more nervous than Claire. I see her delays every days she goes to school, and the kids that are a few months older than her seem years older. But I think it might be different when the comparisons are between my own kids. Who knows, maybe I'm just over thinking this. Either way, I'll find out in a few months. :)

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  22. I am pregnant with my baby now, due in July and LOVE following your posts, as mine won't be as close as yours, but Nolan had IS and is delayed even more than most with just DS, so I feel a connection to that. they will be 22 months apart. I think comparing is so normal and to be expected and I don't think it makes you bad at all. I compare my first "typical" children all the time and I think it's just what we do as parents. Look around at those around us. I do think it will be strange to see a new baby that is "typical" since I am so in love with Nolan and his squishiness, his loveliness, and can't imagine it another way, it will be 5 years since having a "typical" baby for me, so it will be interesting and I can't wait to keep following you for inspiration and navigation techniques! :)))

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