Thursday, June 23, 2011

The Hard Truth



You have no idea how much I love this baby.  

Also, there's her Mic-Key button for those of you wondering.  

I started writing this post in my head some time ago...but decided against it.  I didn't want to give my negative thoughts the air and space to develop, grow and fester.  Positive, positive, keep being positive.  Additionally, I have a little person to consider in the future...a little person who will grow up and possibly read these very words one day.  But I'm also a person.  A person who has been helped immensely through the process of writing this past year and who has felt a sense of relief and release from speaking the truth.  And by speaking the truth I often find that it doesn't grow and fester, but in fact it breaks free and flies away, taking the burden I carry with it.  So here it is...the truth.


People have often commented on how positive we've been in regards to Lamp.  What a great outlook we have and what a lucky girl she is to have us as parents.  And they've been right.  This past year has been really positive.  And happy.  And honestly, she is lucky and so are we.  It's a perfect fit.  My attitude has been positive.  And completely honest and unmanufactured.  I'm not really someone who can put on a happy face and hide my true feelings.  This past year has been joyful, amazing, and wonderful as we've embraced the newest member of our family.  It wasn't something I had to try to do.  I wasn't being positive, I was positive.  Lamp is a blessing.  She is special and at the same time ordinary.  We love her.  Of course I knew there will be set backs and delays and hard things to deal with down the road, but it seemed like all of that was minor.

Well lately, it's been feeling major.  For the past few months I've been experiencing what I have termed a perpetual newborn.  Lamp is growing and developing in many ways--she is more aware of her surroundings, she is more opinionated and has likes/dislikes and knows what she wants.  A natural progression for an 11 month old baby.  Except she can't do anything about it.  She's immobile--she can't move an inch on her own and she can't grab or hold a single thing by herself.  

It's hard.

A perpetual newborn.

It's hard for her.  It's hard to watch.  And it's hard to experience.  

While the slow progress a baby makes towards independence in the first year of their life seems rather insignificant considering how much work goes into their overall care, I can tell you those little things they do on their own really add up.  At this age Princess Sparkle was walking, feeding herself, and playing independently for longer amounts of time.  Lamp has a few toys that she can play with on her own, but they've long expired the natural cycle of a babies interest.  But she tolerates them again and again surprisingly well.  Walking up and down the toy isle trying to find something that would be suitable for her has brought tears to my eyes more than once.  I've made contraptions that help--like a wrist band to attach small objects to, or figuring out a way to hang toys in front of her--but even those are short lived.  Books are usually pushed away these days.  There's her prosthetic arm...but even the progress with that has been a lot slower than I thought.  She goes to physical and occupational therapy where I keep waiting for a breakthrough.  Last weekend we bought a mat--like one a kid might use for wresting or gymnastics--so she could sit without being in a bumbo or highchair and without fear of injury if she falls.  (Since she doesn't have hands to break her fall we can't just leave her on the hard floor without some sort of protection).  The idea is to hopefully encourage scooting or hopping on her bum...something her PT says she's really close to doing.  But so far nothing.

Her lack of physical abilities have been replaced with a lot of vocalization.  Mainly screaming.  She says the word dada or dadee and sometimes mama, uh-oh and some other sounds but it's the scream that has become her standard call.  A scream my husband references to a velociraptor.  I, however, tend to liken it to the infamous screeching eels from the Princess Bride.  Since she can't get anything on her own and she can't talk the scream has been her best method of getting, going and doing.  

It's a little wearing.    

But here's the kicker...when I try to comfort myself with the positive thoughts, the thoughts that have been so natural and unmanufactured, I come up short.  I think about other kids I've heard about or read about with similar situations and I still find reason to despair.  My prosthetist told us about a girl a lot like Lamp who has similar legs and a missing arm but with one sound arm and hand.  She was telling me about her legs to help me understand that Lamp will walk ....but all I can focus on is the sound arm and hand.  Oh my gosh!  A hand?  To have a hand.  If Lamp had a regular hand she'd be fine.  Or there's a website of a mom who has a daughter with a missing hand and lower arm.  I can't even read that website anymore.  One limb?  She has one little limb affected?  Is that even a disability?  I snidely think.  And then I take it a step further...I imagine what Lamp would look like with long chunky baby legs, and fleshy baby arms complete with soft baby hands and I see her cruising along the couch, grabbing a toy or picking up finger food and bringing it to her mouth.  Usually these are just flashes and almost unconscious as I quickly snap back to reality.  But it still happens and it's unfair.  To me and to Lamp.  And I sink a little further.  And the thoughts become a little more hopeless and a little more dim. 

And yes I've seen the videos of Nick and Gabe and they don't have any limbs!  Aren't we lucky?

I don't know.      

Last weekend we were at a get together enjoying the sun and the water.  It was a pleasant day.  As I sat there with another mom of a newer baby, she noticed Lamp's scream and casually asked Does she get frustrated a lot?  Being caught off guard my answer came out short and curt, revealing a tension and bitterness that had not been there seconds before.  

Yes.  She does.  
     

*I just want to end this post by saying I was right...in the days I spent writing the post I already feel a little better.  

20 comments:

  1. It really is the hard truth. It's just hard. I don't think there's any way around that. It is wonderful that there are blessings from the situation, but on the whole, it is going to be a lot of sacrifice and persevering on your and Lamp's part. I can imagine things don't seem fair. Sometimes they're just not. But, like you said, you are both lucky to have one another. What a special relationship you two will have. Think of what a fun, neat person she'll be, and once she starts talking, that will be so fulfilling. Love you Migs, you're doing GREAT.

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  2. Glad you got it off your chest. It would be hard to be in a situation where literally nobody understands what you're going through. Really nobody can understand your circumstance and situation. If anything else you are helping put things into perspective for those of us reading. I need a dose of reality sometimes. Thanks for sharing your journey.

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  3. I cannot imagine what you are going through. I think motherhood is terribly challenging and I'm not dealing with the child rearing difficulties that come with a child with missing limbs. In my mind, you are superwoman.

    Of course you will have terrible days or even months, but it is so clear through your writing how much you love that baby and every time I read your blog I think, "of course Miggy can." Your journey is very inspiring and I find that I think of you often. And you know what, when it's hard to find a reason to be optimistic--you should be pessimistic, you should throw the biggest damn pity party west of the Mississippi--and you should feel good about that. It's not normal to have it all together all the time for anyone.

    I think you are amazing in every way and I know that if anyone can do this, it's you. Thanks for sharing. xo

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  4. Your writing, your soul...it is beautiful. You are a beautiful, real, deep human being who isn't afraid of truth and difficult things. (the truth is usually difficult...right?).

    I watch my friend with her 3 yr. old daughter with cerebral palsy, who is in a wheel chair and has a feeding tube. She has all her limbs, but she can't talk, walk, anything.

    I watch you with the way you create beauty wherever you go. I watch you love Lamp like only you, her mother, can. I watch you express and try to understand and be positive and real...and I think, "She will make it. She will make it." Somehow, some way, you will make it.

    You get to live in a deeper place than most people. I hated living there for so long after Lucy died. I'm starting to miss it. It is hard to see the beauty created inside of yourself throughout all of this, but I see it. And Lamp can see it and feel it. And somehow, you will make it.

    Am I really crying right now? Yes, yes I am.

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  5. Thanks for sharng. Your writing is so well thought out.I hope for all the blessings in the world come to you and your family.

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  6. Linda P.9:02 AM

    Dear Sweet Miggy, In this post, you are the voice of every parent of a child with special needs. There are those times when all seems do-able,and things are going pretty well, and we are positive. Then something happens that makes us feel like our world is crashing in around us. I try to refocus and ask the Lord for help. It is still very hard, though. The past few weeks I have had at least a couple of pity parties that have included crying, turning inward, and even texts of the "poor me" variety to my husband. We are walking through the territory of what it means to have a special needs child who is now a young adult. Where will he fit in? What should he do? You, dear Miggy, are definitely not alone. As I was reading your post, I felt every word in my very innermost being. Does it help to know that others out here can relate in so many ways to what you are saying? I know my situation is not just like yours, just as yours is not just like mine. BUT I send you the biggest of hugs in this sisterhood of special needs, and I thank you for giving voice to what I sometimes feel. I am so glad just talking about it made you feel better. You "let it all hang out" and tell us just what you are feeling whenever you want to because we are here to be listening ears and to lift you up.

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  7. Thank you for sharing. I pray that God will send you and Lamp some relief soon.

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  8. Thanks so much for your honesty. Don't ever feel guilty for speaking the truth. What you are going through is hard and it deserves to be acknowledged. I admire the way you parent Lamp with unfailing love and resiliency. While my child has all of his limbs, he suffers from bipolar disorder and we've spent the last 5 years trying different medications with varying degrees of success. I've gone through bouts of sadness over it, and my situation is nothing as difficult as yours. I think any parent who doesn't have a "normal" child thinks about the challenges that child will face as they progress in life and, in some way, mourns the things they know their child will not be able to do. For you, this is a profound fact. Lamp will struggle, and you will struggle in having to watch it, but your love, support, and strength will give her what she needs to reach her fullest potential. That is something you can be extremely proud of. I'm thankful for your example and for the awareness you bring to others through Lamp.

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  9. The great thing about having fans is they think you are amazing and often say "I could never do that." They are also around to tell you when you don't have time to notice, you are doing awesome. And though we change based on what we are dealt you should proudly say "I have risen and I am better for it." I really wish I could tell you knowing you since high school...who knew you could get even better! You are still fun and wacky and inventive, and have added wisdom resilance and power!

    I imagine a large comfy couch in heaven that we get to through our selves on and collapse...

    I know the exhaustion mental and physical are never ending..it must. But you make it joyus and beautiful. Like it or not you are becoming a trailblazer for other mothers to imulate!

    Sending love the Kimball's

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  10. Thanks Everyone. I appreciate the kind words and the uplifting effect they have. And I'm grateful that you all embrace my family, especially, Lamp and I know that it's making a difference in her world and hopefully the world of other special needs kids.

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  11. Words escape me. Your writing is powerful and so honest. I have come to love your little girls through reading your blog, which I came to via Reagan via Courtney Jane Kendrick, and I am oh so happy to find you. You have inspired me in many ways.

    I read another blog too, http://www.gwendolynstrong.com/ It is about a little girl near my home town. I think you might like meeting this family, if only online. They are the Strong family, both literally and figuritively.

    You have a mighty spirit shining through you, and sharing it with the rest of is a gift to us all.

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  12. Miggy,
    I've thought about this post for a few days now. I even talked with my husband about it. You are so thoughtful, and I so appreciate your honesty in sharing your life with us! Your words definitely have a place in this world!

    I have no advice or words of wisdom. All I can say is that you and B are remarkable people. Maybe you get tired of hearing that--but it's true, so get used to it! :)

    I've said it before, and I'll say it again: everything happens for a reason. Lamp is an amazing little girl who was sent to you and B for a reason. I will continue praying for her like I have since before she was born. Even though I can't imagine how hard her life is, or will yet be, there is a greatness in her--as well as your family--that needs to be shared with humankind. (Sorry for the cheesiness!)

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  13. Hi, Miggy. ☺

    I know you don't know me but I have been reading you since Reagan posted with you on the BLOOM blog. (I found Reagan from Cjane...I need to de-lurk on Reagan's blog, too)

    Anyway. I just wanted to tell you that I appreciate your honesty so, so, much. I realize that I have no way of understanding what you are going through...I only got a small taste of what it is like to be stared at in public and have to field questions everywhere we went. (Our youngest son was born 2 and a half months prematurely and had to be on oxygen 24 hours a day until he was 16 months old) I just wanted to compliment you on your incredible and honest writing. I admire you so much. Truly.

    I am glad you posted about the hard things here. Lamp will read this one day and understand how much you love her and ache for her to be happy...and that your honest writing helped you cope with the heartache of seeing her struggle...because you love her so much.

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  14. I read this and I can't help thinking about watching you with Lamp. You are just the perfect mix of gentle, playful and watchful and I couldn't imagine a better mom for her. I don't mean to brush aside your very REAL and justifiable feelings, but I guess I wanted to share that anyway. You're amazing.

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  15. good for u for your balanced honesty. you're a beautiful writer. God bless your family :)

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  16. Hello to you all. I just posted for the first time on your birthday post - although I too am one of the many who have read your blog for awhile. For whatever it is worth, I hope my little bit of virtual sympathy might help...

    One of my children has disabilities that are physically invisible. Oh, how I have longed for (in my more insane moments - who longs for any sort of disability??) obvious physical disability, a la Lamp. I think, "His life would be so MUCH easier if people could see his issues up-front," or "Think what he could do if ONLY he were blind, or missing an arm, or...". All of that is to say, I think your reactions and emotions are 100% typical. And, from my perspective about 10 years out, I don't think they will necessarily change. You may feel these flashes less often (I do), but you will still feel them. And the bitterness in those moments is indeed extra-dark and bittery.

    I admire your courage, just to keep at it, day in and day out. I think your daughters are obviously lovely and well-loved. I think you have a hard, hard, super-hard road to walk. Faith, occasional trips to idyllic locations, and connections with those who share similar burdens have carried me through. I am adding you to my long list of families to keep in prayer. Seriously, for whatever it is worth, you sound like the mom who can.do.this. :> Angela

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  17. I am sitting here crying reading this. Thank you for your honesty. What a trial this is and will be in your life. And as you know, a tremendous blessing. I feel so thankful for you and your example. Like I told you on fb that one day, I IMMEDIATELY thought of you the day my daughter was born. You are precious and loved, just as your sweet daughters are. Thanks again for sharing your thoughts. I sometimes like getting behind on reading your blog so I have lots to read and contemplate when I do catch up. :)

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  18. Erica S.7:53 PM

    I just came across this post and I so wish I had found it earlier... I was just describing this feeling to my sister, of having a perpetual newborn. I find myself so exhausted after three years of feeding, carrying, changing diapers, etc. I hate to say the words out loud because it feels so traitorous to my son but at the same time, I sometimes just need to get it out there. Thank you for your honesty!

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  19. Anonymous4:10 PM

    I found your blog following Will at Baseball, butterflies & blessing. I have to say this really touched me. My son has same genetic condition as Will but only has 3 limbs affected with one (right leg) not affected. I too have felt the exact same things. One hand (wow, what he could do with one hand!): I'd trade the foot for 1 hand, I say. Sometimes I do see others with more limb loss and think how thankful I am that he is ONLY missing a left foot, a left hand/forearm, AND boy am I thankful for the full but floppy pinky and partial thumb on right hand. He also has jaw issues and what I would give for him to be able to stick out his tongue to lick and ice cream cone. I've definately been there and your thought of 'one arm---is that even a disability?' I've thought that.

    Yetta, in PA (always forget my google account password)

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  20. Anonymous4:13 PM

    Oh, Yetta again. I recently watched the Aron Ralston movie and having a child with limb loss I never thought why he had to break arm bones to cut through forearm vs going through elbow where he wouldn't have had to do this. Someone asked him why and he said he just didn't think of it. But me, I learned how wonderful elbows are, how useful and I just thought he did it on purpose.

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