I heard it from others while I was pregnant with Will, from moms just ahead of me in this journey and moms years ahead of me.

I have said it repeatedly to moms behind me in the journey - moms I've connected to via this blog or through friends of a friend of a friend of a friend.

It's the truth.

Even if I could change my child's differences, I would not.

The blessings are greater than I deserve.  Victories like grabbing or walking or independently eating or running or holding hands or high-fiving or rolling or sitting or talking - they are sweeter when you work so hard to achieve them.

I know this with all of my being.  I've lived it for nearly four years now.  And in case I didn't get it with Will, I'm getting to experience it again with Ellie.

And yet.

Every now and then, I feel just a twinge.  A what if?  Not a doubt of the blessings.  Not a desire to change our circumstances even.  Just a little twinge.

At first, I thought my every now and then, once in a blue moon twinge was envy.

I don't care for that at all.  I wondered what was wrong with me to feel envy and how could I feel envious when I didn't really want to change our circumstances.  I wouldn't change my children if I could...
so was it really envy?

I think maybe it was a touch of envy but really I think it is recognition.  It is slight little twinges that are part of recognizing and accepting our differences, awareness that our family's "normal" is in many ways so very different from others'.

I'm reminded of Emily Perl Kingsley's short essay, "Welcome to Holland."  Kingsley says the following at the end of the essay regarding raising a child with a disability,
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Yes, that is exactly what those twinges are every now and then.  Recognizing that our dreams have changed.  That there is a sense of loss in the change of plans.

It's not a bad change of plans... it's just different from everyone else's.

Recently, I watched a baby learning to walk.  She took little baby steps and kind of teetered as she nearly lost her balance.  Her mom watched her but gave her the space to learn.  Her arms were outstretched and hands were wide open - ready to reflexively catch herself, should she fall, which inevitably she would - it's part of the process.  She couldn't have been much older than my Ellie.

But in developmental terms, she's years ahead of Ellie.

In fact, I wondered, would I ever be at that point?  With Ellie, there is such a risk of danger due to falling.  She doesn't have the reflexes to catch herself.  We're working on building up strength in therapy but from what I have researched, this will be a risk she will face the rest of her life.  Will I ever relax as she walks?  Will I ever be able to casually watch from a distance?  Will I hold my breath and pray that God would daily protect her every single step?

And  I felt that old twinge.  The reality is that we are still working with Ellie on sitting and rolling.  We hope she is walking with assistance in the form of a walker by age 2.  And that is wonderful and a blessing and please don't think I'm not grateful just for the hope and belief that she will walk at all.   I am.

I guess a little part of me just envies the ease with which other moms watch their babies learn to walk.  I don't envy the child.  I wouldn't change my child.  I just envy the ease.  I envy the casualness of it all.  I envy the naturalness of it - the lack of extra equipment or a therapist supervising nearby.  Perhaps I even envy the acceptance of it - the fact that it seems that most moms never question if their child will reach milestones - they can just assume that their child will walk or talk or whatever on time.  They don't have to wonder.

Although my heart knows that the wonder of it all - it's what makes it truly wonderful.

My son was in therapy for years.  Bless his heart - he had to learn to walk twice!  He learned once with prosthetics - bilateral prosthetics that add weight and length to his body - a major challenge for a baby to learn to walk in!  And then he learned to walk without them!

But in some ways, though he has limb differences, he is at an advantage in that his joints all function just fine and he has extremely strong muscles (as compared to his sister.)  (Who would have ever thought I would type that he had an advantage in a gross motor skill?!?!)

I watch other kids hop on their bikes and take off and I think of all the work we are doing with Will.  I think of the "lion king impressive" bike gloves a prosthetist in Dallas is working hard to create for him.  I think of the frustrations he (& we) are feeling as we try to figure out the best way for him to grip and balance on a bike.  Should he wear prosthetics or stubbies or nothing?  Sometimes, the work that goes into each milestone is just exhausting. And the work at maintaining it can be too.

Perhaps God will enable me to relax more with Ellie.  I know He has with Will.  I used to really fear Will smashing his hand one of his little "fingers."  He doesn't exactly have any to spare.  I know that is the grace of God - His power at work in relaxing me and allowing me to allow Will to grow and experience life and take risks.

I don't know with Ellie.  I know her risks are greater, in many ways.  I pray that He will give me the grace to allow her to grow and experience life too.  I'd like to believe that He will simply protect her every move.  And He very well might and He certainly can.  However, I learned quite clearly during my pregnancy with her that He does not guarantee life on this earth.  We are not guaranteed a single day and He has not promised me full protection of my children on this planet.  I can pray for that but it is not promised.

It's just that every now and then I wish we could just sit back and wait for the milestones to happen and assume they will without any effort on our part.  I know that they are more precious when I don't take them for granted.  I know that this insane amount of therapy we are doing will be worth it and will make the victory that much sweeter.

But sometimes, I have to remind myself of the truth when that little twinge tries to take root.  And I also have to allow myself the freedom to have those twinges.  I think it's part of the acceptance of God's plan for us - a plan that we would never have dreamed of but ultimately will be so much better for family.  It's okay for me to sometimes feel the loss of what our dreams and plans were going to be.

Perhaps that's the only way to get to the point of recognizing how much more precious the new plan and the new dreams are.

And just so you know, as soon as I feel that twinge, a much bigger twinge - the size of a 2x4, comes careening through.  It's called guilt.  Guilt for even for a second feeling a twinge  at the ease with which others face milestones.  Guilt because truly I am happy for them and I want to convey that.  Guilt because I wouldn't want to change my child and so with a child with differences comes extra work at accomplishing milestones - it's part of the package.  Guilt because I do know that the blessings are greater and my heart is fuller and because miracles abound and I think I would too often miss them if I didn't have to have my eyes open so much as we work through every challenge.

And a part of me even sometimes feels sorry for those who don't get to know the abundant blessings we do - who take it for granted when their child meets a new milestone rather than seeing it for the miracle it is.

So basically, I wear myself out with my crazy, conflicted, set of emotions.  Which is why I should just stick to less thinking and more clapping and cheering and yay for every single milestone.

2 thoughts:

Mike and Christie said...

I love your sweet heart. :)

23weeks said...

I feel the twinges... but I would never change a thing. I know most would never get it, but not a thing. I am a better person and appreciate things I never would have. I am blessed. Thank you!!

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