reality

This post is for the mama's on this journey with me and those who just like a new insight.  It's a post I've wanted to write for some time, but needed to digest a little.  It's about the reality that is getting pregnant after having a traumatic birth experience.  Now, mine obviously was having a child with down syndrome.  There are of course numerous other mama's with 1000's of stories of a frightening diagnosis, a heart in need of immediate repair, the loss of that precious life in the first hours of birth or prior to, for that matter.  I've heard so many, so many tales of heartache and loss and one thing that my heart and head has longed to hear was, "what was it like when you got pregnant after that?".  I have spoken to a few friends about that, not in my exact position, but with tragic lives lost none the less and have heard their insights on their future pregnancies, most involved, nail biting, heart pounding, just a struggle to get through the 9 long months with anticipation.  So, I wanted to express this, fully and truthfully for anyone out there that may need to hear what it is "really" like.  We are all different, we all react and feel differently, have different faiths that may hurt or help us during these times.  Either way, we are all mamas.  Who love our babies, deeply, whether we kissed their skin for a fleeting moment, embraced them for a few years, or still hold them in our arms today, and they look and act differently than we imagined, we love them.  All of them.  I know that to be true.

So, I must say that to begin.  I must state the obvious and hope that you all know the love for my boy runs deep.  It runs true and is eternal.  It is not based on his abilities, his milestones, his genes.  That doesn't mean that I wish to have a struggle or difficult life for my children, in saying that, I of course wish for a typical, healthy child, who will throw tantrums and try our last nerve at times, but for the most part, follow a normal path in life.  We all want that, it's hard to watch your child struggle.  There are many times I don't post all of the struggles that is having a child with down syndrome.  Lately what's been wearing on me, is his poor immune system that was heightened with his steroids for the seizures that he took LAST summer, yes they wreck their little bodies for THIS long and it's hard.  To see him sick almost always, breathing like darth vader, snot plugging his tiny little nose holes and drainage from his skinny ear canals, it gets exhausting whether or not to treat him yet again with antibiotics that wipe him out even more.  You see, it's not easy having a child with special needs, it's a lot of work, a lot of the time, and really a mental marathon, constantly balancing what you could be doing more of, what you should be letting go of, pushing harder on, expecting more out of, ugh, I just don't know sometimes and the difference with Nolan than my other children is I feel the weight of his future that much more on my shoulders.  Anyway, I digress, simply to illustrate the real challenges that we face daily.

When I found out I was "knocked up".  I was STUNNED to say the least, and ECSTATIC, truly.  It wasn't the timing I wanted, I knew the work involved and boy am I tired of being pregnant, I can't even tell you.  I am not a happy pregnant lady.  But, all of that aside, it felt SO wonderful to be pregnant again.  I don't know why.  I do know this.  In the special needs mama world, we talk a lot about "do over", wanting to just replace that experience and vanish it from our birthing experiences...at first you are obsessed with it, it's common, I think everyone I have talked to expressed some level of that.  But, I knew this wasn't that and I was so grateful that I had recently grown out of that need when I found out. I wanted this baby and this pregnancy not to have the strain involved, the pressure to be a "do over."  It wasn't.  It was easy, not the morning sickness, not the exhaustion, but just loving this little life, dreaming all over again and feeling excited.  It still is.  I knew immediately I didn't want testing, which I've discussed in past posts, so won't go into again.  So, I just went on and weeks went by.  It was time for our 20 week ultrasound and that is when the truth comes.  I discussed that as well.  But, now I just wanted a FUN 3D ultrasound and wanted to share it with our big kids and Jeremy and thought it would be magical.  I mean seeing your baby, it's always magic.

The truth is, it wasn't.  I just kept obsessing, every angle, every picture, is there a nasal bridge? Is there a big gap on the toes?  It breaks my heart to type this, to admit this.  But, I pride myself on being honest.  And honestly, that's all I could focus on.  It sucks, it really does.  That the naive, magic of pregnancy went away for a bit.  That the REALITY of life stuck it's ugly mug in and tried to run away with me.  I let it for a bit, was sad that I went there, sad that I let myself go to that place, but it's true, none the less.  So, I think what is so shockingly different this time, is I can't imagine having a child without some sort of problem, just as I used to believe and never thought I would HAVE a child with special needs, now I can't seem to imagine one without them.  I can't believe I could be that lucky, to sit in the hospital and hold that brand new, perfect bundle and just celebrate, no tears, no shock, no fear, just celebrate.  It's crazy to think that way I know the odds are in our favor, that this baby is typical genetically and has all it's fingers and toes, and we will in fact most likely have that moment to celebrate.  But, in the depth of my heart, it lurks, that doubt lingers and the fear creeps in moments when I least expect them and it says, "don't get too comfortable..." .  So, that's the challenge.  Over and over telling myself, either way, any outcome, it's our life, we will survive and remain strong, I KNOW this.  I FEEL that.  But, I can't help but be honest and admit there is that fear, overshadowing this beautiful soul's delivery.

such a precious little face

The other raw truth is, it's been hard to dream this time.  I remember with all of our other babies, the images we had of what they would be like, what they would love, granted they were ALL wrong, LOL!  They all turned out to be so very different than we thought, that it's almost comical.  I imagined Graham to be strong, brave, fearless and reckless almost, that he would be a natural athlete like his daddy and years from now I would watch them play catch in the backyard and then on the football field.  Well, let's just say at about age 3 when Mary Poppins was his obsession more than baseballs we kind of re-thought that whole idea!  Then with Audrey, I remember giving her that name, specifically thinking, she will be independent, outspoken, an entertainer, love the spotlight, and wow, she runs from any amount of extra attention from anyone outside the 5 of us, and she is soft hearted, soft spoken and loves to cuddle and be cared for.  Nolan, well, I've stated before how we thought he was our athlete THIS time, he was all over my belly, moving and grooving more than any other baby I had, and I just thought of him as a carefree spirit, running wild and hard to reign in.  It's interesting looking back on those images and how they come mainly from your own hopes and dreams for your children.  I had lunch with a friend today and we talked about how we have to stop ourselves from pushing our children in directions that WE want them to go, realize they are their own people, with their own dreams and really if you are any good at this parenting thing, you just provide the means and encouragement for them to find their true callings, which may be the furthest thing from what you wished or hoped.  So, this time, I have no preconceived notions, no major judgments of what this baby will look like, be like, act like, I have no idea.  Maybe that's just being a parent three times over, you learn to just be at peace with whatever they may be, or maybe I am protecting myself from the initial devastation of the dreams we lost with a lifetime diagnosis.  I am not sure.  I am sure it's reality either way.  And with that, this hormonal mama will surely ebb and flow a different direction sometime soon...