Good bye May 2012

Life moves too fast sometimes.  It’s becoming a common theme as we move forward and that knowledge is sometimes enough to bring tears to my eyes. 

Payton is 10 months old today and it’s a reminder that there are so many moments that are incredibly precious and no matter how hard we try, we can’t hold on to them forever.  You do what you can to cherish them but there is nothing that you can do to keep them.  I vaguely remember what it felt like holding Livy close and smelling her head when she was an infant sleeping.  When she would cuddle into my arms and give in to that trust and warmth.  Payton does it and that is what allows me to remember those special moments with Olivia…but I know that my time with Payton is limited too.  She’s growing up and doing it fast.

Writing this I can feel the tears swell as I imagine my girls being young adults and it seems like its just around the corner.  Then I have to remind myself that they are still young, one 2 and the other less than a year…still, a part of me recognizes the lack of control we have with life and the fact that this beautiful time in our lives won’t last forever.  It may stay beautiful, but it will be a different kind of beauty and I already somewhat mourn the loss of what we have now.

On Saturday I officially deemed Payton to be standing. She’s not great at it (as is expected when someone is learning something so significant for the 1^st time) but she’s working hard and knows she’s making progress.  I believe her maximum time doing it is about 10 seconds.  The clincher though isn’t the length of time she’s standing but that she’s pulling herself up and instantly letting go to stand.

She does it more on the grass (or in our bed in the mornings) fully aware that the landing is softer than on the hardwood floors (smart little girl) and because its softer, she’s fearless on the grass.
She’s also finally figured out the walking part, that putting one foot in front of the other results in forward motion. She’s pretty wabbly (and only does it when we’re holding on to her hand) but I remember Livy at this stage thinking it was going to be a while before she was able to walk on her own but then to my surprise she figured it out quick.  A matter of a few weeks.

We continue to feel incredibly lucky that Payton is developing without any delays.  I was so prepared for challenges when we learned about her defect and it never escapes me knowing how fortunate we are that she’s as close to normal as she can be considering she sports several scars on her body including one that covers more than half her abdomen (please know that I use the word ‘normal’ as a comparison to a non CDH baby and not meant to describe Payton  or any other CDH baby as abnormal, though technically a hole in the diaphragm is abnormal in the true sense of the definition.  Still, anyone with sensitivities to the use of the word normal vs not normal isn’t meant to be negative, rather descriptive for simplicity sake). 
ie:

Normal: (noun) typical state or condition.

Abnormal: (noun) Deviating from what is normal or usual, typically in a way that is undesirable. (and I’m assuming if given the chance no parent would choose CDH for their child so I think its safe to say CDH is an undesirable condition).

I remember wondering about Payton’s future and reading about other parents who described their CDH babies as “just like any baby” but seemingly always with a disclaimer of “slightly delayed” or “adapts so well she/he is just like a non-CDH baby”. I always wondered whether it was simply their “new normal” or whether indeed life with a CDH survivor did it eventually sort itself out (for the majority of CDH survivours) to be exactly like everyone else or where there always something somewhere (outside of the scars) that indicated such a tough start for these little ones. 

For anyone who’s expecting a CDH baby and wonders if there is potential for their child to develop at a level that is normally expected for children not born with a life threatening defect, there is.  The only thing that I can see different about Payton from Olivia is her scar and while I know that not every CDH baby is as fortunate to be doing so well so early in their life, sometimes life throws us that ‘good’ curve and we get to go through the normal motions with an awareness that normalcy is pretty darn incredible. 

Livy continues to be a treasure and her brilliant little mind continues to make my heart hurt (in the way only too much love and pride can do). 

Yesterday Olivia was helping me in the yard (we’re pouring more concrete and building a fence on our front yard and I’ve been building the concrete forms) and she would follow behind me picking up (or spilling) drill bits, screws or the tape measure.  Her little plastic red car got in on the action and by the end of the day her car was the mode of transport for the random drill bit (that she confiscated from the box) and the tape measure.  I LOVE seeing how her little mind thinks things through.

On another note, we’ve regressed with the potty training.  After weeks of no issues she’s been having ‘accidents’ though I don’t think we should call them accidents since she’s doing it on purpose.  I believe its an attention attempt since we usually make such a big deal out of her peeing herself (and the fact that she’s more and more wanting “up” or cuddles).  So now, peeing one’s self is low attention, peeing in the toilet is a big deal. We’ll be introducing a reward system soon so that she can see that she gets special treatment when she does it right.  I think this all started around my last work trip in mid May so its very possible that my working so much, traveling is impacting her.  It also may simply be a stage, especially with a younger sibling. 

In closing I’ll include a few photos of the girls. 

A walk down memory lane

Next week Dwayne and I are planning on attending a BBQ being held by the fertility clinic that aided us in creating Payton (or perhaps we should say that we aided them?.?.).

Its definitely a walk down memory lane since its been about a year now that I stopped spending much time dwelling on issues of infertility. 

I may have gotten to this point naturally but my pregnancy complications and Payton's rough start definitely solidified the fact that our family is complete (or as complete as it will be using artificial means since I would happily welcome one of those 'ops' pregnancies if it were possible...but I digress).

Last week when I recieved the invite to the BBQ it brought with it a slew of emotions about a part of my life that I had closed the doors on.  Most importantly, it brought with it a refreshing moment of knowing that life for us was PERFECT.  That the memories the clinic and what it represents were no longer coated in aprehension and a thin layer of fear & loathing; just a calm I didn't know actually existed (up until that moment I thought there was a good possiblity that my feeling of completeness was artificial and masked by the chaos that is now our lives with 2 full time working and highly active parents).

On some level, attending this BBQ I feel like a fraud because infertility no longer rules my emotions, my finances and my schedule for the next 3, 6 or 12 months.  It was actaully for this reason that I felt that I wanted to attend.  Because attendance likely wouldn't bring with it any negative emotions.

Next week I'll get to see some familar faces (faces of other mothers) and meet some new ones (chubby faces that bare a striking resemblance to some familar faces).   It will be a bittersweet combination I'm sure of those of us who have fully crossed over mingling with those who have one foot over, the other foot still lingering in the hopes of being the one to choose when their family building is complete rather than some other force doing so, and finally a mixture of those still eagerly (or not so eagerly if they've been at it a while) waiting. 

I'm intrigued by this opportunity to re-visit my past, but only because I now know what our end game looks like.  Call me a coward (because that's exactly what I am and the exact reason that I wasn't able to attend this last year) but I am a content coward and for now, that's good enough for now. 

I can always hope that by next year I'll progress even more.

To Clarify...(ha, yes, you guessed it, rant continued but explained)

I think its important that I mention my ‘rant’ from the other day is not directed at any one person’s thoughts, comments or actions.  It was triggered by something I read that stayed with me long enough to bother me and make me realize that its an important enough issue to blog about.  I felt compelled to express my voice on this topic because by being silent, it had the potential to continue causing hurt to those in the trenches who were struggling and didn’t have the strength to voice their pain.

I remember that pain and I remember being silent then because I didn’t want to be the ‘bitter, grieving mother who couldn’t sympathize with others who were maybe struggling’.  But now I’m in a better place and I feel that now I’m strong enough to carry the bad rap that my thoughts may bring.  I’ll happily be called ‘bitter’ if it saves one hurting woman the burden of having to hear how hard someone else has it because they have to feel bad about being on the right side of life's statistics.

My thoughts are not directed at ONE person.  The blog post was simply the result of reading one comment too many (even though that comment was NOT intended to be malicious and was delivered by someone who had an incredible capacity to reach out to others and is doing what they can to help minimize other's pain).  My post was to educate.  Much like that list that is available: What to say/do and not say/not do to someone who has lost a child.  For many people they just don’t understand why or when their words have the potential to hurt.  

These thoughts of Survivors Guilt (even though they are NOT intended) have the potential to hurt.  I know because I’ve heard these types of thoughts for YEARS.  Years of hearing how hard it is for others who have ‘won’ in the game of life's statistics because they have a hard time enjoying their good fortune because others ‘ruin’ it for them (in not so many words but I hope you get my point). 

I had one friend tell me how bad she felt because she had an abortion earlier in life and now years later she had a baby who was alive and healthy while mine were dead (SERIOUSLY?).  I’ve heard through 3^rd parties how hard it is for other mom’s to be around me (in earlier years) because they felt guilty.  I’ve been on grief support boards where women of healthy children have commented on how hard it is to see others suffer and they feel so guilty (I’m not sure what they were looking to gain on this one when they come to a support group of grieving women). 

A week ago I was with friends in an area where there were a number of very disadvantaged, likely homeless people (of varying degrees).  One of my friends mentioned that she had a hard time being there and needed to leave, that was too hard on her to see people struggling so much.  I’m sure in her mind she perceived herself to be someone who has a big heart.  To others who are also fortunate I’m sure the exact same thoughts were shared “She’s sensitive to their plight so it’s hard for her”.  I believe that the world is full of really crappy things and avoiding it (especially if it makes you feel bad) only does those who are faced with the crap a huge injustice. How do we know the depth of pain if we avoid facing it because it makes us uncomfortable.  Too often we avoid acknowledging them and sweep them to the back because they make us feel uncomfortable”.   When someone’s disadvantage makes you feel uncomfortable, don’t avoid and please, don't turn it around and make it about you.

Another example of this was when I was pregnant with Payton and we learned of her defect and started better understanding the risks associated with the pregnancy complications.  I left an online pregnancy support board because I made other pregnant women uncomfortable.  In a time I needed support the most was when those who had it "all" deserted me because my journey was too hard for them.   I’d rather be faced with Survivors Guilt then that feeling of being shunned. I can still remember bawling my eyes out because my shitty world didn’t just end with my problems but now I was making others feel bad and was being rejected for something beyond my control.  You want “Ouch”, walk a mile in those shoes.

If you feel Survivors Guilt, that’s normal.  We all do on some level, at some time whether it’s walking down the street and seeing a homeless person, talking to a friend faced with a terminal disease, or a friend who has faced the unimaginable: the loss of a child.  Just don't take someone elses misfortune and turn it around and make it about yourself.  Ask for support and sympathy for problems you ARE dealing with...not support and sympathy for problems based on others misfortune.

So, my words of advice, my thoughts, my point of view (aka my blog) for those reading who do want be sensitive to those less fortunate.  Be a friend, be supportive and keep it about those less fortunate and then celebrate your blessings because you just never know when your fortune may change and those moments of bliss may have been wasted.  Do what you can to embrace the joy and never forget how wonderful that joy is. 

"Survivors Guilt" (a little rant)

I read something today that I felt strongly enough about that I needed to blog about it. A part of the reason I want to blog is to be a voice (admittedly I'm being a voice in a passive aggressive manner because I didn't address the comments directly, instead I'm addressing them on my own blog).

I'm indirectly responding to a mother's post regarding survivors guilt.  A mother of a surviving CDH baby and when reading it it struck a cord.

Survivor's guilt.  I know its real and to escape the feeling fully is impossible, but blogging about it and publically posting it is crap and it is selfish. Plain and simple.  Its publically taking someone elses horror and bringing the focus and sympathy back to the person who hasn't lived the horror.  If you think being a survivor makes you feel like crap, how do you think the loved ones feel about actually living it?  Pretty darn bad so suck it up cupcake and stop making someone elses pain "all about you" for public sympathy.

Ok, the rant part over.  Here comes the Devil's advocate to the survivors guilt.

Life is unfair (unless you are one to believe that God has choosen a path of pain for you and you find comfort that he's testing you more than the next person...which I don't fully understand the reasoning behind but I believe I posted my thoughts on the concept that "God chooses to bless some, crap on others and all the while we still individually believe he's chosen us to be the lucky one" theory.  Thats a different blog post...

Where was I?  Oh yes, life is unfair.  Those of us who have lived the crappy stuff, we know life is unfair.  We know it sucks.  If you happen to be a survivor of the same ailment that caused our own crappy times I have news for you...we don't blame you AND, most importantly you don't remind us of what we lost, that part is hard to forget and your presence isn't what may cause us to cry...its the fact that we lived a really crappy situation and THAT'S making us cry.

As a person who's lived through a crappy situation (or two) I can tell you that the only thing that annoys me more than the mother who says "maybe you just weren't meant to be a parent (which is why x,y,z all happend)" is the person who says "oh, I'm so sorry if my good fortune makes your bad fortune so much worse, but if you feel bad, imagine how bad I feel knowing I make you feel bad".  Seriously??? How did my grief, pain and problems become all about YOU!!!  (oh, wait, I said my rant was over didn't I??).

Here's the skinny. If you are a mother and your child survived while another mother's baby didn't, the best comfort you offer is a genuine "I'm sorry for your loss".  Then hold your children tight and love them with every ounce of your being and never forget how precious life is.

As mentioned previously, I know survivor guilt is real.  I know that no matter how much you try, you are going to feel how you are going to feel.  The only thing I can say it please, don't make someone elses pain all about you and don't do it publically with the potential goal of gaining sympathy (especially in a forum where those less fortunate than you may read about it).

As always, these thoughts are mine.  You don't have to agree but hey, it is my blog... 

A Full Day

Today has been a full day and tons of fun. 

It was a good day of sunshine and getting outside and taking it all in.

The biggest 1st today was that Livy got her 1st haircut!!!  Yes, she's almost 2 years and 10 months old and we finally cut some of her hair, just a little trim along the bangs but enough to tie a little ribbon around and put in a little bag for a keepsake.

She's growing incredibly fast and tomorrow we'll mark the girls heights on the wall to see how much they've grown in the last 6 months.

Payton continues to do so well and she's now a pro at pulling herself up into the standing position.  She's been playing with her little dragon walker and is also learning that a few steps means foward mortion.

Today while we were out on the lawn Payton started making progress with her standing and balance.  She stood for a good 5-6 seconds working hard to keep her balance.  Its progress that she works to keep her balance which is a good sign that she knows what she needs to do to move forward.