Is this all I deserve?

I am feeling a little battered. Today we received yet another 'challenging' diagnosis for one of my children. Between the three of them we have varying diagnoses of ADD, SPD, dyspraxia...I am beginning to wonder, is it me? Is it just us? All three kids?? Is it their crappy genetic inheritance that is to blame? I know I have varying forms of all of the above. Which makes me feel super guilty for passing it along to my children.

Or is it just that the professionals are too trigger happy now days with diagnosing these kinds of 'issues'? I am extremely grateful that I can afford therapy for my kids and that there are helping professionals willing and able to assist, but I am beginning to wonder if it is just us?

And then there is my secret, dark fear.  That this is all I, we, deserve.  Because I struggled so hard to have children, that having children with challenges is what I deserve.  That 'normal'* children are reserved for people who conceive easily and without help.  "Normal" families get to have "normal" children. People like me, families like mine, should just be happy with what we are and just shut up.

*Normal meaning "average" / typical / no challenges / no learning issues / no therapy needed.

Of course my rational mind (haha) says this is not true. But there is a part of my mind that is so scarred by infertility and loss that it is beyond rational. 

I don't care about myself, about any extra work that might be required from my side, but I care deeply about my children. I feel extra guilty because I brought this on them.  Because of my own genetic make up and the predisposition to the ADD/SPD/Dyspraxia above, because I am broken (infertility), their path somehow has to be harder. 

Please don't think I feel that my children are "less than". They are not. They are awesome and amazing and clever and competent and funny and brilliant and "normal" in so many respects and have HUGE potential. I wouldn't be surprised if they become leaders / CEOs / entrepreneurs / presidents / stars / celebs / best-at-stuff.  But I worry, when I get these diagnoses, that their path to being whatever they want to be is going to be much harder. No mother (or father) wants their children to face extra challenges. Life is challenging enough.

You see, that is why I say infertility is such an insidious affliction.  It doesn't just affect the mother-to-be. Or the the father. Or the single/gay/married/straight parent-to-be. It affects their friends, their family, their lives, their relationships, their health, their finances, their mental and psychological well-being.  During and after.  It affects more than that. It is a wound that leaves a permanent scar.  The bitter legacy that infertility has left for me is the fear that because I had to fight and beg and plead and struggle to have children, that my children are somehow damaged because of that struggle.

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I wrote this post 3 months ago.  I never posted it because it felt too raw. I was worried about being misinterpreted.  The most recent diagnosis was too fresh. But I have had time to process this and I am calmer and more in control. And like with Adam and Kate, I will do whatever it takes with Max to make sure he lives the happiest, most fulfilling life he can.  My kids are awesome and special and unique and I am so incredibly lucky to be their mother.  

I am going to write a separate post about Max and what we have learnt so far. 

I am strong. If I can survive infertility, I can survive anything.  I wil do whatever it takes to make sure my children lead happy, fulfilling lives. 

Comments

[Andrea]

Nobody parent deserves this. I have four children and it wasn't until my youngest was nearly four that we learned that my kids had inherited a neurological condition from me. Between the four of them we have been through 4 brain surgeries, 3 spinal surgeries, and innumerable tests and procedures. You didn't do this to them, crap just happens. You love them and will always do your best to get them the best possible treatment. Your kids have great lives and know they are loved. That is what you and they deserve.

[21stCenturyMom]

"Or is it just that the professionals are too trigger happy now days with diagnosing these kinds of 'issues'? "

Yes - yes - yes... you're kids are unique. They have quirks. They need to learn how to exist in this world the way they are - JUST LIKE YOU DID! And you did. And they will.

I'm sick about the way we think all children should conform to some unrealistic norm and how we label them with syndromes and conditions when they don't. This isn't to say some kids don't have big issues but if your kids are learning at a reasonable rate in school, have friends, have interests, play, interact and generally amuse you and love you then they are fine. They are kids. Life is hard.

Malcolm Gladwell has written a couple of books about how adversity and quirks make people stronger and more successful.

Some of the greatest minds had to figure out how to manage dyslexia and managing it is a big part of what lead them to be so great. The guy who invented Kinkos did it because he's dyslexic and didn't think anyone would ever hire him. He ended up building a global company and selling it to FedEx. Charles Schwab founded one of the most successful stock brokerage firms in the world.

You overcame your dsypraxia and your kids will too but not because someone steps them through inch by inch - they will figure out how to cope in spite of all that therapy.

Stop feeling guilty - you are a great mother and your kids are fantastic. If experts can make their passage through life a little easier then great but honestly, people who sail through life grow up to be either stunned that they are just another member of the human race or they are flat out boring. Struggle makes us interesting and gives us depth. Your struggle has made you interesting, spurred you to start a business that is helping hundreds of other women, given you a platform to teach your children that perseverance can overcome struggle and... I could go on and on. It absolutely breaks my heart that you are using that struggle against yourself. Please stop. What you have done with your struggle is something to celebrate, not beat yourself up about.

[hopping off soapbox now]

[21stCenturyMom]

PS - Normalcy is an illusion. There is no 'norm'. Some people just talk about it more than others. I considered my kids to be 'normal' but they all had issues - depression, dyslexia, bad vision... Repeat - normalcy is an illusion. It's like that perfect body the media keeps telling us we can have if we just want it bad enough and work hard enough. HA!

[21stCenturyMom]

ACK - "your kids" not "you're kids" See - I seem normal and yet I have grammar OCD. Damn.

[Tabitha]

10 years ago I would do anything to have a baby. our IVF included the ICSI procedure. The goal was to get pregnant. It worked. I had boy/ girl twins born in October 2004. I've since wondered what effects the ICSI procedure had on natural selection. Survival of the fittest. I feel terribly guilty thinking this and even worse when I say it out loud or type it. My beautiful wonderful amazing children are who they are because of this. but I do question it quietly to myself sometimes.

[Jean]

Tertia, I admire you so much. I think you are an amazing woman, who has made your own success on your own terms, and I have so much respect for you. If your children "inherited" a tendency toward these diagnoses from you, then they sure as hell have a lot of potential, as you say. Maybe the things that make their lives challenging now go hand in hand with the things that will make them successful in the future. I don't blame you for your initial reaction, but you deserve every happiness; you bring so much happiness to others. Don't be so hard on yourself.

[neesie]

Lets just say that the honesty of this post and your secret fear touched a nerve. My comment doesn't have to do with the awesomeness of our kids, it is about the very deep scar left by infertility. I know that undeserving feeling. The very warped notion that I should not expect abundance. I know that it is a lie,and I consciously reject it. But I know that it is a legacy of feeling broken and useless, and battered by disappointment.
Aside.....our children are Awesome!!

[Char]

Neesie just said everything I wwas about to. *hug*

[Marcia (123 blog)]

No, you (and all of us infertiles) STILL deserve the very best life has to offer.

I agree with someone above - everyone has stuff, most people just pretend things are fine.... (facebook envy, Linkedin envy, Pinterest envy).

I think you're amazing and that your kids are amazing no matter what labels the professionals want to slap onto them.

I do think everyone is far too trigger-happy with the labels. I am 100% sure I would have had to be in therapies for something or another if I'd gone to school now. Back then I just really didn't have co-ords :) and I had ugly handwriting... but I was top of the class every year. We all have stories like this.

Merry Christmas, Tertia, to you and your AMAZING miracle family :)
XXX

[Rachel]

Tertia,
In my life I have realised that those who really want children end up with "issues". My mom and dad wanted all 4 of us girls. I am the oldest, I am a carrier of cystic fibrosis, the next sister has slight cerebal palsy and is a carrier of cystic fibrosis, my 3rd sister has cystic fibrosis in the pancreas and is a diabetic (which somehow has been reversed due to doctors messing up the medication), my youngest sister has cystic fibrosis, diabetis AND epilepsy.
I believe we are only "given" what the Lord feels we can cope with. At the end of the day it is NOT your fault in any way, it is how it is meant to be. I believe you and Marko are awesome parents and will overcome what ever challenges you may be given, just keep the faith and move forward.
Professionals now a days are very quick to dish out meds etc to children. Just the other day I went to the dr about my happy pills and he recommended Ritalin as he felt I had ADHD. Seriously??? I don't think so.
You will figure it out hun, just hang in there.
xxx

[Heather]

The fact that you wanted children so bad and that they are so precious to you surely means something. You are a strong woman and you WILL find a way through this.

I also think people are quick to diagnose.
Get a second opinion.

[Wobs]

You are an awesome Mom with awesome kids. I support what 21stCenturyMom has said above - Doctors are very quick to label children (and adults for that matter). Stress less and have a wondeful festive season filled with love, peace and laughter.

[Evilisa]

Oh sweetie! I have bad news. Your kids are normal! Especially Max. If they weren't healthy and happy they would be easier to control and manipulate. Your a great mom with natural worries. Roll with this. Parenthood is hard. Your kids are perfect.

[AmandaSo2]

Tertia, I can't imagine a world where everyone who wanted children had themselves genetically tested and then ruled themselves out because they had some form of genetically linked anomaly. And I'm not sure what a "crappy genetic inheritance" is, exactly. The conditions you list are challenging, I'll grant you. But I can Google them and find famous, successful people who have risen above them, and conquered them.

As someone who was accidentally conceived, and then born with relatively few genetic challenges, to indifferent, difficult parents, I can promise you that your intense love and devotion to your children will be more important than a single gene or chromosome you have bestowed upon them. The fire that has burned in your words since I started reading this blog, about having your children, caring for them, surviving their illnesses (and sadly even the loss of one) shows me you and your husband are not indifferent. You are passionate and caring and driven - first to have them, then to raise them -- and this will be what saves them in the end. Peace, Tertia.

[Nicole]

Tertia, you are the most amazing mother and human being! Your children's issues have nothing to do with you having struggled with infertility!! Absolutely nothing!! It has never been shown that ivf has any effect on the offspring's health and well-being. If I remember correctly, Max was conceived naturally, right? See, no difference! Plus you carried your twins to term - which I did not do. Many of the issues your children currently have, they will outgrow as adolescents and adults (I am not yet aware of what Max has, though). And the ones they will keep as adults, they will learn how to deal with. Just like you did - while becoming as successful as you. But I do know how you feel. I carried my ivf twins to the 34th week, and they had some issues with prematurity - like hypotonic muscles around their tummy and mouth. One ds needed speech therapy because of this - and is now done. The other - with his hypotonic abdominal muscles - is a first-class sports person (not too many genes he is sharing with me, lol). I felt terribly guilty that they had issues because I had been unable to carry them to term.
And I can tell you, my mother did not do ivf, and she could not have cared less about me. Your love for your children shines through everything that you do, Tertia. Who could be a more deserving mother than you??

[Heather from NYC]

Parenting MEANS you take responsibility for it all. Not to mean that you should...but you do. My children are gorgeous and perfect and wonderful in every single way possible. But the challenges they do have (some real, some run-of-the-mill) cause me physical pain and horrible guilt. They ARE me. And I carried them. And I fed them. And I raised them. I try to allow some room but being a mother doesn't permit much.

You are not alone.

[Heather from NYC]

AND you are very brave for writing what we all think and feel and are afraid to say.

[Esmeralda]

I'm a former rehabilitation practitioner, and I guarantee you that all that diagnosis does is identify symptoms at one particular point in time. It doesn't predict the future; nor does it have any relationship to Max's conception. I believe that if we were able to test the entire population, we'd find unbelievably high numbers of people with one or all three of the disorders you are managing. Which begs the question: what's "normal"? From the outside, you and your family have normal lives;the kinds of things you blog about are interesting precisely because we are all facing them to some degree or another. So there is a sense in which infertility, ADD, SPD, dyspraxia, anxiety etc., are "normal" for humans living today. Your kids aren't being singled out at all; in fact, they are just like lots of other kids. And none of it is your fault - after all you inherited your genetics from someone. There'd be no children at all if genetics were the determining factor. I've followed your blog long enough to know that you would never allow "experts" (or anyone else) to circumscribe your children's potential, opportunities, or self-esteem. So they'll get whatever help they need, and they'll grow up to be happy, normal people. Just like their mum.

[Stefanie]

Your kids are perfect. Just because a child isn't in the norm, doesn't mean there is something wrong. It's fine. Not all kids do things at the same age, rate, speed, etc. And, that is perfectly okay. One of the worst things we as parents can do is google every little thing we thing is not right. It will make you nuts! Max is perfect!

[Northern Star]

Beautiful post! I agree that the battle scars run deep and will never go away. Now a mom through open adoption, I am starting to process all sorts of things I didn't even know were buried inside. Infertility is so damaging in so many ways.

I know you love your kids just the way they are, but it's totally normal and ok to struggle with the hard parts. Of course you are happy with your children, but please know that we understand!

[Jjiraffe]

This post touched a raw, exposed nerve in me. Yes: I worry that my legacy of infertility and the lengths to which I had to go to get pregnant will in some way handicap my children. Throughout their childhoods, I have grimly waited for some terrible thing to happen, because well, don't I deserve that since I'm so broken?

The comments on this post are soothing and make me feel a lot better. Thank you for writing this.

[KeAnne]

Oh how this post resonates with me. We too are dealing with some challenges w/ our son and I have not been able to avoid thinking dark thoughts about maybe this proves that my genes are faulty after all and I wasn't meant to reproduce. I naively hoped that the many challenges we faced building our family would mean that further lightning would strike elsewhere. Ha.

Thanks for putting words to a topic I have been too afraid to address myself.

[Chickenpig]

When one of my twins received his autism diagnosis, one of the professionals touched my hand and said "It doesn't mean he can't live a normal life". I didn't say anything out loud, but inside I was shouting "Of course he will, you silly little bitch, he's ALIVE!" My son is alive, and amazing, he brings light to my world. After 6 years of trying, surgery, miscarriages, and rounds and rounds of IVF I don't feel like he is what I deserve...I think that he deserves us for parents because we don't take anything for granted. Those parents that have to "mourn the loss of their idea of a perfect child" haven't learned the important lesson that the 'perfect' child is the one that is yours and alive... perfect in every way.

[Sara]

This post really resonated with me. That infertile broken feeling never really goes away. It recedes during the good times, and then comes back with a vengeance during moments of stress and sadness. Hugs. I'm sorry that you have yet another diagnosis to deal with.

[Mali]

So much of this comes back to the issue of what we "deserve" and "don't deserve" in life. As if certain things are a reward for good behaviour, or a punishment. And I don't buy into this at all. Horrible people have great kids, wonderful people can't have kids at all, or have kids with serious illnesses or other problems, and in between, there is every combination of good/bad/lucky/unlucky that you can imagine. I don't believe that I didn't "deserve" to have children, or that my BIL deserved to lose his child, or my sister and BIL deserved to have a child with cystic fibrosis. Life is unfortunately random. It isn't a series of rewards and punishments. And when we can believe that, I think it is much easier to accept the hand we're dealt.

Wishing you and your kids the very best.

[Saskia]

Wow so many of my feelings have been echoed right here in your post. When we finally got pregnant via ICSI after 6 years of IF, only to find out at 20 weeks that our baby girl had a 1:1million hectic genetic disorder that neither of us carry...I felt exactly the same, that we didnt deserve a baby, even one we tried so hard for. Now a mother through adoption, I have to force myself not to think of his activeness as ADD etc and force myself to believe that maybe, just maybe all will be fine. But, how can it, when the worst has already happened to us, so why shouldnt it happen again?? Thank you for reminding me that my fears are completely normal.