Things I can't control 1...

The serenity prayer has always annoyed me, ever since I first heard it as a young teenager. 

"God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And wisdom to know the difference."

Firstly, I don't believe there is anything I can really control, as much as I would like to. I mean, I can't even control the hair on my head, they keep sticking out, falling out, turning gray.

It's not really the control-freak in me that is freaking out... well, it kind of is. But it's a lot more about the knowing the difference part. 

There are a few black and white things in life, fair enough, but the vast majority of things surrounding me are not black and white. I mean, for most things, how would you know if they can be changed, unless you tried. And if you couldn't change it, how on earth than would you then have the serenity to declare, "all right, this can't be changed then, must fall into that category, tick" let's move on. 

How would you not know that you failed, how would you not be frustrated, and how would you just move on and accept it. And I won't even go down the route of the connotation of the word "wisdom", which kind of implies that it is a God-given knowledge, so practically a higher power telling you what is possible or not possible. And then where is the all things are possible with God thing...

The process of gaining this wisdom must surely involve trial and error and I suspect some people learn their limitations sooner than others and become more resigned and don't try that much anymore. Surely, just like with any preconceived idea or prejudice, the process of induction will help you make the right assumptions in the vast majority of cases, but not always. And doesn't this process of learning our limitations, reduce our enthusiasm to change the world? Isn't this the whole idea of growing up and becoming boring, middle-class suburban people?

I don't comply well without knowing why and having a chance to think through it and accept or reject it, or fake-accept it, yea, I do that too for survival obviously. 

So no wonder I find my life being a mum so frustrating at times. Motherhood arrives with million unspoken rules about what's right, engraved in us and in society. 

More on the specific things I can't control next time. 

The ink is sore

The geneticist has shared the result on the phone, yet looking at it on a piece of paper was so final. I will never forget that feeling. Some laboratory in Birmingham, managed by the ever so efficient NHS sent us the results. Seeing it on paper was so final.
I felt that all over again today. I know that one way or another we will start GH treatment in the near future, so I wanted to get a height estimate to share with the endo.
I have always estimated that women with this mutation are around 128-135 cm, this was purely based on me talking to other parents, and people with HCH. I know of someone who has an estimated height of 142. So I have asked the wonderful Dr Pauli if Fi is old enough now to get an estimate, I knew that once they hit about 2 he can do en estimate based on current height and growth velocity, which he then can revise every year. He says that he gets it right by about an inch and I believe him, he is not a man to boast and chooses what he says very carefully.
So we got the height estimate: 137 cm, 4 feet 6 inches. It makes my heart sink. I know that the variability of height given this 125-150 is not really true for this mutation and 137 is actually more than my estimate, but still 137. It sucks.

I admire

people who are always so positive and just get on with things and put a positive spin on everything and of course at the same time I wonder though if they are really that positive and whether we shouldn't all experience a certain level of grief at some stages of the journey and if this should be expressed occasionally.

I can of course only speak of myself. For the most part, we are really happy and adore Fi who is just a lovely typical 22 months old, apart from the  10 cms she is shorter with than her peers. Her speech is coming on beautifully and she is a real fun kid.

Yet just over the last 2 weeks, I can't help but remember that our plan was to have our 4th child around now. Had everything been OK, I would either have had a baby by now or would be heavily pregnant. This will never happen now, I could not go through another pregnancy after what we had been through with Fi, I would be so worried about what may happen.

I think it's OK for me to shed a few tears over that and not pretend that it is just OK.We may adopt one day. But for now, we will stay a family of 5. And the neighbor's cat...

Sometimes

I don't post, because I don't know what to say. I have lots to say, I just don't know how.
The real and fake optimism both fail me and nothing is easy.

I want to stand up for what I believe in, at the same time, I am too liberal to believe that my way has to be anyone else's way. But then i fear that others will judge me for what I believe in and i don't want to have to have a heated discussion, each to their own, I believe in that.

I want to focus on the science and be an objective observer, but I can't because I am so partial to this wanting to make Fi's life as pain free as possible. Emotionally, cognitively.

She tries to copy her sisters who both do gymnastics, she actually has really good coordination for a 20 months old trying to do tumbles and splits and all. Yet, she will never be allowed to do gymnastics, the vault is too dangerous and her arms seem weak compared to the others at this age, then again, that may change. How do you explain that? Will that innocent, proud, all-capable  look disappear from her eyes realizing that she is different? What % of my children's confidence am I, are we as a family accountable for? - Now this is a good research idea...

How does one have the capacity to live through their feelings, not ignore them nor suppress them with all the popular Western coping mechanisms, while maintaining the ability to experience joy?

How does one fight day after day a million small battles, yet retain the ability to be spontaneous?

Where is the line between optimism, realism and depression?

How can one be so sure of so many things, yet so unsure about the means?

Leaving Madison

I am sitting on the bathroom floor writing this message,as I would have done all communication for the last week.  Fi is fast asleep. We are leaving for the airport in 20.
Our visit with Dr Pauli went great except for one minor concern he mentioned which really freaked me out. Will share once I have slept, researched and digested a bit, once I will have gone through the coping cycle.
I made 2 friends for sure which is huge.
I am now certain that we will come back next year and do a combined Dr Paley and Dr Pauli visit. Once again I am so glad that we could come here. Medical attention here is just superior and worth the sacrifice we as a family need to make to come.

2 minutes after we landed...

Hungarians are known to say things as they are, very much like the Dutch. I suppose for anyone raised and socialized according to the Anglo-Saxon standards, people are brutally blunt, sometimes to the point of rude.  It is nice to know what people think, but sometimes I would prefer ignorance. Why am I going on about this... 
After disembarking (is that a word?!) the plane, we had to wait for the stroller for about 10 minutes, I was holding Fi in my arms and this airport employee was chatting to me casually. I never noticed her staring at Fi, I am very tuned in like that so I would have picked up on it. Once the stroller arrived we said our good byes and headed off... Budapest airport uses those mobile tunnel things, I never realized how much they echo, until I could clearly hear this woman say to her colleague (the one who delivered our stroller): "Surely that baby couldn't have been healthy, she had a fucking big head and a huge forehead."
I was shocked, firstly that I could hear it, secondly her choice of words (not the swearing, I do that a lot myself), but more the accuracy of her observation without me ever noticing her staring and thirdly how noone ever passed any comment in Ireland where there are zillions of babies and people know everything about them (well one Canadian woman did, but she is a doped out musician so she doesn't count :-))and how in the first 10 minutes after arriving to my tolerant home country I would run into something like that.
Yes, I have been very aware of her macrocephaly and large forehead, I just didn't expect others to do so too. And yes, when I saw her next to my sister's 7 months old she does have a large head which is differently shaped. I know that she "will grow into her head", yes, she will probably always have a large head but it will never be as large compared to the rest it is such a fascinating subject, the vast majority of her head growth has already happened. Her head grew an incredible 12 cm in the first year of her life, it will grow another  3-4 cm this second year if it follows her current curve of +2 SD and then 7 cm all together in the next 16 years, that is quite astonishing, isn't it?! I also know that having more hair will help.
So here we are. I am so glad that Fi is completely unaware, yet in a weird way I think its strangely unfair on her, that we have been going through all this worry and emotion all the time and she is oblivious to it all, it's almost as if we were taking behind her back. I do want her to be oblivious to as much of our worry as possible, of course, but it makes me feel like we are almost cheating on her, that we can't enjoy her babyhood and toddlerhood without all this baggage.
Having said that, I think the reason why I am so shocked that this woman has picked up on it, is because I am so used to her proportions that of course I don't notice it all the time and she is such a cute and clever baby that I have stopped thinking about her condition all the time. She is our wittiest child for sure and we love her.
Here she is with her nana and sisters.

Sorry...

I haven't written anything over the last week, mainly because I have been researching the growth hormone treatment in all my spare time.
But I am just too upset today, I have to get it out... Please don't comment nice things to me, I am too upset to take anything nice.
Why do bad things happen to good people, I know it's the stupid question of the ignorants, but really.
The couple I first really connected with on POLP got some upsetting news about their achon kid, I am so upset for them, I couldn't even write to them for the whole day. That kid could be ours, they are one of us, why do they need to hurt so much?
One of the girls whose lengthening follow has had a rough few days - I worry about her too. Another goes into surgery today - none of this is my business, I haven't even met these people, yet in a weird way I feel more connected to them than to some of my family who more or less choose to ignore Fi's condition.
And then there is all this talk on the RGA site about whether or not there are any cognitive problems connected with HCH. I cannot face this topic without getting ready for it, I ache for these people whose kids really struggle, I so want to make it better and I can't. There is no saying more annoying than this God help me to accept the things I can't change... I HATE that!

Major moaning alert...

Another doctor visit has gone by, another 4 paracetamols... I wish I could wash it down with a some hard liquor..., this is my blog I get to leave everyone in suspense, does she really take painkillers and drinks and breastfeeds... no.
 Seriously, I can guarantee though, I develop a massive headache by the end of every medical visit. It has gotten so bad, that I now take paracetamol with me in Fi's medical notes folder... You don't have a medical notes folder, you are no REAL type A, and as far as I can see, only really anal type A people read my blog, like me... Love it. Many just come back for every post and never comment, kind of love that too. Don't misunderstand, I love the comments, but I love the suspense part as well. I am getting a bit carried away today with my painkillers and imaginary drink, aren't I.
So back to the stress of medical appointments. I work, albeit from home and have flex hours (I work mornings and evenings, enjoy kids and do house crap in afternoons), but I still need to put in a good 8 hours work every day and a bit over the weekend to keep up my game with the single girls who run around in their suits at the office looking glamorous, while I slob at home and juggle the 3 girls.
Must remember not to organize any play-dates or conference calls, or anything even remotely relevant for the day. (Hope you notice that I have my priorities correct, childen's play-dates before international conf calls). I start a list of questions a good while before as well, print out relevant previous notes, research, correspondence to annoy the doctors with, they love me. Never does one have such a short time to establish ground rules than when meeting with a doctor...
The stress mounts the day before, must remember to tell the nanny (she is normally here in the mornings) to come later. With all this preparation you would think it will be a walk in the park... Right.
How it actually went today will need to be included in part 2, as I fear I am so long-winded that noone will ever read this post. I had to breastfeed 3 times the teething Fiona while I typed these 20 lines...

So I had the talk

with Tara, my eldest yesterday. I suppose we haven't made it a secret that Fi had a medical condition and have spoken about it multiple times in front of the kids, but we have never pushed to have a formal discussion. In my experience children will show very clear signs of interest when they want to talk about something and if they have the capacity to process the information. We were at a playground and there were a few kids with Down Syndrome and 1 with autism, here is how the conversation went:

T: Mammy, are those children sick?
Me: Yes Tara, they have a medical condition (cannot use the word sick, not even with a 5 year old...)
T: Fi is sick too...
Me: Yes...
T: Did she catch it from me? (Tara has a really bad case of tonsillitis...)
Me: No, she was born that way.
T: What's her sickness?
Me: Her arms and legs are a bit shorter and her head is a bit bigger.
T: That's OK, when she is 4 or 5 her arms and legs will be long like mine.
Me: No they won't be, not when she is 4-5. When she is 8 and 12, she could have surgery if she wanted to, to make her legs and arms long like yours.

She then stared into space for what seemed like an eternity, and I suppose about 10 minutes speechless for a 5 year old girl IS eternity.

Me: What are you thinking about?
T: I am sad that Fi was born sick, why was she born sick?
Me: I don't know, I don't know, it's just something that happens sometimes.

1. I was totally unprepared for the discussion, it came out of the blue.
2. I wasn't sure about telling the surgery part...but I did, I felt that since she has raised the question really maturely, I owed her to tell her about that option to at her level.
3. My husband thinks that it was way too early and I shouldn't have said anything yet, and he may well be right, 5 is very early for digesting something like this. Then again, she will understand of it what she can, and it is probably a lot better to have an awareness from an early age.
4. I knew that I would be hearing a lot about this over the next few weeks and already this morning, when Fi was cruising along her cot, Tara said: Look mammy, her legs are so long already...

Temperance

I have never done this before, but I cannot not do it...

Look at these pictures, isn't this baby gorgeous?

My 5 year old looked at her and said that she looks like her sister, Fiona, and she does... Her head is a bit bigger, her legs are shorter, there is something unusual about her, she has dwarfism.... she is adorable and she has no mummy or daddy by her side.
This child is in an orphanage and is waiting to be adopted. I hope that one day we will be able to adopt a child with dwarfism, I would want to take Temperance today... But for now the best I could do was to contribute towards her adoption costs and post her on my humble blog with a handful of visitors.
Will you guys do the same?! Will you hope with me (and pray if you do that) that a family that will adore her, will find her and take her and that they will have enough funds and energy and time to go through the adoption process.




Here is where you can donate: http://reecesrainbow.org/38546/temperance-15h

I have tears in my eyes as I type this and my heart is broken that Temperance has most likely been left alone because of her dwarfism, but I want to do more than cry about this for a few minutes and think how great we are and happy Fi is to have a family like us... Please do the same, don't just get emotional...

My heroes

My heroes are 2 mothers that I have met online, will call them E. and C. for the purpose of this blog. They have 3 kids each (I think) and one of their daughters has HCH and ACH respectively. The girls are in their teens and have had their first leg lengthening and arm lengthening already. These women and their daughters will probably never know how much their e-mails, blog posts, FB messages have helped me over the last year. They give me hope and guidance for so many of my questions.
These mothers and their kids are real fighters, they haven't given up, they haven't let this diagnosis knock them out, they and their kids couldn't follow the "accept and live with it" route - please understand I am not dismissing this route, I fully appreciate that it is what most Western people are comfortable with. I admire people who can take something that's seemingly negative and make a positive thing out of it. (That's just not me, I am the worst pessimist in the world, my husband has said to me that I should become a worst case scenario adviser for the Pentagon... and I think I might do quite well at the job :-))
But it's hardly the road we will choose to follow. A very wise man who I think actually opposes ELL has said to me so well that in his opinion the choice of ELL is an extremely personal one, it is so dependent on the cultures and traditions you were raised in. It's almost like the question of religion, people exhibit such strong views on it.
I think Western cultures are a lot more individualistic, so I can see how being your own person and everyone being different are values that people admire. Yet to me the choice to allow my child to live life like anyone else seems so natural. So I am keeping an open mind, I am continuing with my research...

It happens to be

my birthday today, but please don't wish me happy birthday, it's very kind of people to do so and lots of family and friends called me and texted and sent silly messages on FB. But I am really not into the whole thing of celebrating a year going by. Don't really understand why people do that over the age of 18 or 21... Anyhow, but now I am acutely aware that a year has gone. I have been thinking about this all last week in fact.
It was on Wednesday April 13th 2011 that the sonographer measured Fi's femur and said that it was very short. She called the fetal medicine director in who said to measure all the long bones and they were all on the short side, some of them below the 5th percentile. He said to come back to a rescan in 4 weeks, but he thought it was still in the normal range.
I knew in my heart of hearts then that there would be something going on...

I am struggling

I am struggling with the whole notion of having a child who will look so different. Fiona's height has now dropped to -3 standard deviations on the WHO height chart, so she is at 0.4th percentile and probably soon she will entirely move off the chart. Her head is now on the 91st...
We went to my company's children's Christmas party and I couldn't help but wonder, will I enjoy it in a few years when everyone will be staring at her and us, will my other children enjoy it... When does the staring begin anyhow, I wonder and how long does it take to get used to... The few older kids I have seen with hypo, I suppose I wouldn't have noticed that they look different when they are on their own, but surely they are a lot shorter when they are with their peers. It's not like people are walking around with tape measure to measure limb lengths...
I hope she will only look different and won't be different in her cognitive capacities, for now she continues to meet all her milestones with flying colors. And what's the psychological impact of living your life feeling so different and how much of that can a loving family compensate for. And maybe she will be like Lia, maybe she has inherited my restless mind that is always racing ahead, never giving me a second of peace. She is nearly 7 months and there is not one fay that I am not thinking why this had to happen to her, the cruelty of it all is beyond me.
We haven't said anything to our other kids and now I am beginning to wonder if we should, but my husband insists that it is better to wait until the question arise. And he is probably right, every time I start a big topic with the kids that they are not ready for yet, the conversation kind of abruptly stops.
The other day I overheard this woman complaining that her daughter is so tall that she always has to stand in the back for school photos and she kept going on and on how unfair this was...

A bag of baby clothes

I sent a bag of baby clothes to my sister who is due in a few weeks. I am delighted to give her them, but also sad, it means that my decision not to have more kids is final... Couldn't face pregnancy again, couldn't go through another 9 months of worrying, and if God forbid something was wrong, how could I dedicate enough time to Fi and another baby. So no, no more babies in our home, so we savor the sweet baby scent of Fiona for as much as we can...

My other children need me too

Without going into too much detail, I got a huge wake up call last Thursday about how much my other children need me too. It's time for me to do less research on Fi's condition. I think I must have read everything that's worth reading on it anyhow by now... and get on with life...

Overwhelmed with worry

Tara did extremely well in school, she just walked straight in, there were kids clinging onto their mums with the dads trying to get them off, a very heartbreaking sight actually....

Then I realized that in a few years Fi will be going to school, I cannot possibly imagine how worried I will be... I might just carry a baseball bat with me at all times in case there are any bullies...

Reality bites, reality sucks... I hate that most descriptions say that HCH is a mild form of dwarfism... Over the last week I have connected with families where kids are at the 50th percentile on the achon chart, where the child didn't grow between 9-23 months at all and is the size of a 3 year old at the age of six. Where a 4 year old is in 12-18 leggings... So WTF is mild, screw the euphemisms... I am yet to meet someone who is mildly impacted...
For the next year or so, I am worried about Fi's mental capacity, when she doesn't turn her head towards me when I speak to her, I am overwhelmed with worry: Is it because she can't hear me, is it because her head is larger and she can't control it, is it because she is tired, is it because she has a cognitive problem...
Then I will worry about her speech, then about her health, her starting school, then about the surgeries, then about her having children... All this freaking worry, don't think I will live very long...

"Wouldn't it be nice..."

It's strangely comforting to be writing a blog that noone might ever read, or whoever reads it, will understand what we are going through since they might have had the same feelings.

Fi has changed so much over the last few days, she is really chatty and is cooing and smiling at all of us all the time. I looked at my blogs to check what I was up to when the other 2 girls were this age. With Tara we were still struggling with her breastfeeding and just generally not knowing how to handle an infant... I don't think I would have held her for hours and chatted to her.
I guess with Lia it was all about worrying how Tara took to her, pretty unfair I know, but this is what my blog review is telling me...
Ironically enough I think we are enjoying Fi the most, because I think she might need early intervention I am doing way more singing and playing with her than I would have done with the others as a result she is a lot more interactive... Even my husband made a comment yesterday, he was enjoying her and then just turned to me and said " Wouldn't it be nice if everything was OK with her?"
That sentence really broke my heart, G is not a man of many words, his emotions run deep and are not expressed though words, he is an IT engineer, a runner, a swimmer... he internalizes things and then pumps up some adrenalin to get rid of the negative thoughts, for him to even say those few words talks about a lot of heartache that no adrenalin gush could wash clean.
And it is exactly the same way I feel... Fi is so cute, pretty, interactive, but the joy in admiring her is never complete yet, the pain about her having this stigma is always there.
I wonder when that will go, I guess as she grows and her personality enfolds we will see more of her as opposed to the physical characteristics of her condition.
Noone would know that there is anything wrong with her for now, unless they are a geneticist, not even a pediatrician could see it... I of course know the little signs that give it away. Often I will be looking at the little line where her forehead is, it is alien to me, I know it shouldn't be there, but when she smiles at me and looks in my eyes, I can't see that line anymore, it's only Fiona who I see and that is my hope.

Why us?

I never actually asked this question. I think asking "why us" would fundamentally disagree with my beliefs. Everyone should be equal; this time we were the lottery winners, we got the one of the 3-5 winning tickets from a million.
Having a seriously stigmatizing disorder would be just as unfair on anyone else. I don't believe in a meaning either, I see lots of people who do, good for them. I don't think that I was a bad person in my current or previous lives and thus my bad actions have come back to hunt me down, that's bullshit, this is my blog so I get to swear occasionally, especially when I am lamenting about superficial theories on world order that are so easily passed by ignorant people who don't realize how hurtful their comments are to someone on the other side..
I don't think either that we were chosen because there was this little soul wondering around in eternity and we were the great family for her to be raised up with, to me - albeit flattering- that is equally surreal, I would not choose myself as a parent to a child with a disability, I am not the perfectly thoughtful patient mother.

The truth... if there is such a thing, anyhow, my truth is that something out of a since fiction movie happened to us, I can't comprehend how, and this bugs me because I need to be able to put my head around everything to process things. 1 gene decided to mutate, it's like a software bug as it were... maybe that's too harsh, a software glitch perhaps.

Now, asking "Why Fiona?" is a lot harder question to ask and one that makes me furious, she sure didn't deserve to be set up to live life through such hardship, neither does any other child, but I guess as a parent, my instinct is to react a lot more vehemently.

Will we make the best out of it? - Surely
Do I feel like that I would prefer to have my left leg cut off just so that I could give her some extra height and arm-length to protect her from all the negative discrimination that she will need to face? - Of course, I am sure any parent would choose that - can it be done, nope.

I am a fighter to my core, everything I can recall about  my childhood was about fighting to survive, to overcome a multitude of difficulties, I am not one for surrender, I am the type of person people hate to have arguments with. I cherish every moment with my kids, although some days I cherish most when they are finally asleep, but for the first time ever, I would hit fast-forward if I could. I would fast-forward the next 13-14 years to see that Fi has grown up well adjusted, that she is doing well in school, that through whatever treatment we choose to have, she will be able to manage fine, that she has friends. I would feel sad for not whitenessing every little step of her development, but I think I would still choose to fast forward, I am not looking forward to the hardships that we will have to encounter at all.
Do I have the strengtht to go through this life, no, I don't, not today anyway, but I will, day by day, and some days I will collapse and feel that we can't do it anymore and the next day I will pick up again and move the giant mountain for my daughter, for all 3 of them, because this is what we do as mothers.

The importance of support groups

I guess I never really realized the importance of support groups until we REALLY needed one. Sure, I would have been a member of on-line mothering forums discussing pregnancy, sharing helpful tips and tricks, but the support groups became very important once we found out about Fiona's potential condition.
We wanted to connect with other people who have gone through the same experience, who know more than we do and also for Fiona and the other girls to be able to meet with other people with restricted growth conditions.
I now facebook, e-mail, chat with friends I have made through these forums, read their blogs. It has a normalizing effect, it's not only us, and actually it is OK and they can be happy and lead normal lives.