Monday, August 20, 2012

Why?

We had our 9 month well-baby visit today (they're 10 months, I know- scheduling problems). I was so excited, honestly. Having actual "well-babies" at our well-baby visit, what a novelty! We actually got to go through the "Well Kids" side instead of the "Sick Kids" side of the office.

I ended up walking out of that office with my husband and our two adorable babies with tissues shoved into both of my pockets, swollen eyes, and an overwhelming sense of "why?".

Have you ever had those moments? Those "why?" moments. Where you just have to stop to wonder what the meaning is in all of it? It usually comes after a good long thought session on what the future looks like, what the past has felt like, and where we really are right now.

The well-baby visit didn't do much other than point out and highlight our little man's shortcomings. I absolutely adore our pediatrician, but she hasn't been living this with us, every day, watching it unfold in all of its rollercoaster-like glory. She hasn't felt each and every slope and then ridden every single peak for all its worth. She wasn't there for the neurology appointment and then the second opinion. So she asked all of the questions and we answered like we had to- honest and somber. Knowing that what she was noting in her file wasn't a positive dictation. Caleb isn't where he needs to be. He's behind, he's 'at risk', he's losing some ground.

The flip side to that, and the hardest part, was knowing that we weren't there to get any answers. We've already gotten all of the answers we're going to get right now, and for the near future. There were no magic tricks or perfect solutions. There would be no quick fixes or things to try.

He's not broken. He can't be "fixed".

But I know that he's also not where he "should be", riding that average like the rest of them. And there's nothing to do but give him the tools to use to live this glorious life to its fullest. Whatever that is for him.

And then the "why?". I have dreams for my children. They started to grow before these little ones were even conceived, back when our original dream was to beat infertility, be a part of those few lucky ones. They blossomed as the babies took their place in this world and continued to build as they grew and took on such beautiful personalities to fit my magnificent dreams. And what if our dreams don't fit reality? What if my dreams have to change?

This is life.  It's ever evolving. It's shaping every day, dynamic and flowing. But I can't shake the "why?". No matter how logical I am about what's behind us and what lies before us, that pesky question keeps popping up.

I'm a woman of faith. I know the true answer to that question. In my heart of hearts, I know. But sometimes I just don't want the answer. I just want to question. Scream it out into the ether. Listen to the silence. Know that there aren't always quick answers. That sometimes it's just life. Messy. Painful. "Wrong"...or 'right'.

He's such a good kid. He deserves so much more than I've given him. He's too full of hope to have a Mommy who lacks the strength to dream right now. It's not fair for him.

Hearing those words "in utero trauma".  How can I possibly shake that? How can I unhear those words? Will I ever be able to get past the thought? The what if. The why.    The guilt.

I write all of this knowing that this space is shared with so many who are experiencing far more difficult journeys.  Who's original dream has yet to become reality. Who's growing dreams were shattered to pieces.  It's hard for me to come here and lay down my own stories knowing that they don't touch the heartbreak that so many of you are living with.  And yet, I'm here knowing that this space is home- a place where I belong, surrounded by those of you who know pain and who know victory unlike many others.  So I lay down my worries; my fears.  I need your help to hold me up, yet again. 

I want so much more for my son than they're saying he will ever have.  He deserves so much more than this. I can never let him know that I feel this way.  He's perfect, just as he is.  And yet. 

Why?

Caleb had a seizure two months ago.  His brain MRI showed low white matter volume.  Fluid around his brain. A thin corpus callosum. At risk for cererbral palsy. Hypoplasia of the Corpus Callosum. Benign hydrocephalus.  It's just...a lot.

I guess I just needed to write it down.  I needed you to know.  I'll be back in a couple of days to write our ten month update. To focus on the amazing lives of my children- all of their development, their personality, their skills.  To highlight the wonder that this life brings and the unimaginable joy that I get from staring into their curious eyes.  To capture this fleeting moment with them, the good and the bad.  To remember.  I'll be back in a couple of days to forget.  But right now, I needed to write to you. I needed your support. 

Thank you for holding me when I'm too weak to stand alone. This is not the first time that I've turned to you for support, and it won't be the last.  And for that, I am eternally grateful.

25 comments:

  1. Many hugs to you. I understand these feelings. I really do. We're nearly 5 years in and I still struggle from time to time. I'll tell you, though, that these heavy words from doctors won't always be the focus of your mind. You'll watch him grow and develop in HIS way--however that may be--and you will be amazed at your beautiful boy. Know that I am abiding with you and giving you a virtual hug at those moments it all seems overwhelming. As much as I didn't believe it when I was told this, it will be okay. And you know what? It is.

    Much love...

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  2. Hugs! He is lucky to have you as a mom, don't forget it!!

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  3. Like you said it is a lot. We have certain dreams and expectations for our children and every child has setbacks and it is difficult to handle. You are dealing with more and doing a fantastic job adjusting. When the word Autism came up in my family we all lost our minds, we grieved, we blamed, we cried, we researched and finally then did we accept. I just kept saying that with or without complications we loved this boy as he is and it shaped who he was. I wouldn't change him for the world the good, the bad and the ugly.
    Thinking of you and sending you stregth. It does get easier but you have every right to take time to heal, adjust and then move forward when you are ready (although I know you are doing all of these things on a daily basis).
    Don't ever feel like you can't vent and that you don't have a right to your feelings just because you struggled to conceive and some others are still struggling. You feelings are valid and they don't take away from others.
    Thinking of you and wishing you peace of mind. Caleb is one lucky boy and you are one lucky mommy. You are doing a fabulous job and recognize that. Nobody could take all of that information in and not have any reaction. Be kind to yourself and now that any mom would feel these same emotions.

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  4. One Day, I was in tears last night while reading this on my phone. Caleb is a wonderful, strong little boy, and he will have the best and brightest future ahead of him. Maybe it will be along a different path than you originally envisioned for him, but that's okay. I'm sure that readjusting your mindset to these new hopes and dreams for him is beyond difficult, and it's okay to grieve that change, but know that you have SO many of us with you every step of the way while you process your emotions about this. Thinking of you and your whole family today...

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  5. I am so sorry. (((HUGS))) Just focus on one day at a time.

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  6. Hugs and love. We are facing some struggles now too and I havent found the courage to write them down yet. But know that I'm holding you in my heart and my prayers.

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  7. I've been thinking of you and hoping beyond hope this wasn't going to be the news we saw next about Caleb. Your dream for him will evolve, but allow yourself that time to process and grieve what you had thought "would be". Hugs to you...

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  8. I asked for strength and
    God gave me difficulties to make me strong.

    I asked for wisdom and
    God gave me problems to solve.

    I asked for prosperity and
    God gave me brawn and brains to work.

    I asked for courage and
    God gave me dangers to overcome.

    I asked for patience and
    God placed me in situations where I was forced to wait.

    I asked for love and
    God gave me troubled people to help.

    I asked for favors and
    God gave me opportunities.

    I received nothing I wanted
    I received everything I needed.

    My prayers have all been answered.

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  9. You are no less of a mother for feeling frustrated or crushed by the news as we all have dreams and hopes for what we thought would be for our children or with anything else. But so often in life, things don't turn out the way we expected and although it may take some time, your hopes and dreams for Caleb will most certainly change and grow into new, wonderful dreams for a very happy future for him. Hugs.

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  10. BTW, I just looked back at your last post, which I had read before but glad I did again now, and although of course I knew it anyway, it was a reminder of just what an amazing job you are doing. You said above that he deserves more than you are giving him but I can tell from that amazing smile he is flashing in almost every photo and those love filled words you write about him (and your daughter) that you are the best mother he could ever have. Keep dreaming... both of your little beauties will do amazing things in their lives.

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  11. Hi! I came across your blog as I was searching for twins blogs (I have 8 month old twins and a 4 yr old). I just wanted to tell you that your little man captured my heart immediately bc he is so darn cute (and that doesn't happen with other people's kids very often :)) I'm sorry to hear about he recent findings--can't imagine how difficult this is on so many levels. Will keep all of you in my prayers. He really is insanely adorable.

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  12. I have been following you for about a year now and am always amazed with your honesty in sharing all that is happening in your life, both the ups and downs! My prayers are with your family through this journey called life! And especially with your little man! He is handsome and so strong, and more than anything has a wonderfully awesome mom and dad! What more could a kiddo need?! You're in my thoughts!

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  13. You are such a wonderful mom to your littles, One Day. It is obvious in everything you do that they, along with B, are your whole world. I know that you are doing everything you can to help your little man live the best life possible, and that you will continue to make the tough decisions to ensure that he will grow into all of his potential.

    Grace and Caleb are so incredibly lucky to have parents like you and B to walk along with them through life's many ups and downs. With all that you have been through, I have no doubt that you have been uniquely prepared to deal with any trials that come your way as a family.

    It is so hard when love sometimes isn't enough to "fix" what your heart wants healed so badly. It is brutal to watch our children struggle. Heart-wrenching, even. I am so glad that you recognize so much more of Caleb's "good", than his delays. For now, that is all they are; just delays. As I'm sure you are well aware... he's so very worth the wait. =)

    I will be here for you whenever you need me. You have my number. Love you!

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  14. Replies
    1. Thank you all. I'll be back I promise...just need to find my bearings and get above water. The littles are almost one and its truly unbelievable!

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  15. Been thinking of you and your little ones, and sending positive thoughts your way.

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  16. Just checking in...hope you are all okay. Sending hugs.

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  17. Thinking of you. I hope you had a great holiday. :)

    Sending more hugs.

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  18. Waves hi. Hoping you are all well. It's funny that I keep coming back almost exactly at monthly intervals. What's with that? lol

    Anyway, sending hugs.

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  19. Just checking in to see how you're doing! xoxo

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  20. Hey!

    I am so, SO sorry I missed this. I fell off the radar when it comes to blogging last summer when we started at looking for my return to work. And I have only just started to really find time to check in on my blog reader. And I wondered how you were doing and feel truly awful for missing this when you wrote it and for all those weeks and months since!

    I am sorry to hear about what you and Caleb are going through. I have worked with teenagers with cerebral palsy and hydrocephalus (and other things) and so although I cannot say I know anything from a personal point of view, I do know how big and serious this all must be for you.

    My heart is with you, as it always has been, and I truly hope that you're figuring out the best way for you all to face the future and make those dreams of yours come true, in whatever way that may be! It is so hard to change your dreams, I know, but you are so strong and you will get there. Keep faith and please don't beat yourself up, you are the perfect mummy for Caleb and Grace - that's why you were chosen for them!

    Amanda xx

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  21. Checking in...hoping you are well. Hugs!

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  22. I keep checking in for updates, and nothing! are you all okay? can you let us know? I have been following your blog for a long time and it is sad not to see you posting anymore :( praying you are all okay!

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  23. Back again. :) Hoping all is well.

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