Friday, June 22, 2012

The Original Special Needs Spotlight, pt. 2




Hey everyone!  As you probably remember I decided to re-post a 2-part interview I did with Reagan of Reagan's Blog and Hairdresser on Fire.  We did this interview a while ago on the now defunct blog Bloom.  It was doing this interview with Reagan that gave me the idea to do the Special Needs Spotlight.  I also thought this would be a good time to invite you, my readers, to ask me any questions you have regarding Lamp and our family and perhaps I'd do a special Special Needs Spotlight about us with you guys as the interviewees.  You can post the questions in the comments section or email them to me at thislittlemiggy at gmail dot com.  Are you excited?  I am!  

You can read part 1 here. 
Now here is part 2, Reagan interviewing me.    

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Reagan:  Along with so many of our mutual friends, I was blown away by your strength when you were given the news of Lamps condition. I remember reading your email and crying for you. What helped you be so strong? Do you think the fact that it was your second baby made you a little more at ease?   

Miggy:  Well the initial news was a total shock and there were plenty of tears and outright fear.  When we had that ultrasound it wasn't like hearing that our baby had down syndrome, or some disorder that we could at least comprehend (not that those are easy to hear either).  It was just "she's not developing normally and at this point we don't know what's going on."  We didn't know if she'd live, die, need round the clock care or what.  So there was definitely sadness and fear.  But the very next day we called some friends from our ward to come and give us blessings.  There was an almost immediate change.  I just felt a lot of peace after that.  It's not like I knew everything was going to be OK per se, but I just felt peace.  And I know that can only come from Heavenly Father and Jesus Christ.  So that was really the crux of it...it didn't come from me.  And then reflecting on the little bits of preparation and tender mercies we had received leading up to this point helped me to feel that although this wasn't something we would choose for Lamp, it wasn't an arbitrary random thing, but a purposeful situation that Heavenly Father gave to Lamp and to us.  And it definitely helped that she was our second baby...I'm not sure why exactly, but I think even knowing that Lamp already had a sister who would help watch over and take care of her was reassuring.    


Reagan:  You are so creative and seem to always be making sweet little things for your Lampy. In Piper's first year especially, making things (like premie clothes) helped me feel more connected to her and like I was providing for her like any mom would. How do you feel making things for Lamp has helped your situation?  

Miggy:  Well once we got over the initial shock and got back to preparing for a new baby, it was when I started to make some things for her that the excitement of the situation was restored.  When you go to the ultrasound and you get bad news suddenly everything 'fun' takes a back seat...gender didn't really matter as much, who cared about the nursery, etc.  So making and creating for her really helped to bring back the not just a sense of normalcy, but a sense of excitement.  Like, Yay!  I'm having a baby...let's celebrate!    


Reagan:  What do you do to maintain your "normal" family feel? For instance I take family pictures and dress Piper up for Halloween.

Miggy:  Well at first I think we both felt pretty guarded about Lamp.  Like we were a little wary of showing her off to people because we thought people would be more interested in checking out her limb anomolies, rather than just wanting to see her like any other new baby.  It was new territory for us and we were not sure what to expect in the way of reactions from other people--whether they were friends or strangers.  When she was about 2 months old we took a family outing to the zoo and it was the first time we weren't keeping her more covered (I just want to make this point that we weren't covering her because of any shameful feelings of her, but because we felt very, very protective of her and didn't want to have people staring at her in a voyeuristic sort of way) and we had quite a few people come up and just tell us how cute she was and just ooh and ahh over her.  That was sort of a turning point in realizing that it was going to be OK and even more normal than I thought.  People weren't going to drop their jaws and stare.  Other than that, there really is a normal family feel.  Right now she's no more helpless than any other baby.  As she gets older I could see that we might have to make some adjustments to have a more 'normal' family...right now it is pretty normal.  I guess the other thing I think about along these lines is that I don't want our entire family identity to be "the family with the girl who has abnormal limbs"  if that makes sense.  It wouldn't be fair to her or to us.  


Reagan:  When you are feeling completely overwhelmed, is there something you do for yourself that makes you feel a little better? I run or shop online, haha. I'd love some more affordable ideas if you have them!  

Miggy:  Yeah I'm a shopper too.  And my other little quick-pick-me-up vice is usually along the chocolate/treats line.  But that's just like a quick stress reliever...so I should actually jump on your running bandwagon.  (Which I do like to do, but maybe when I'm getting a little more sleep).  I think creating is the main thing I do for myself.  Painting will always be my first love, but sewing and I have had a pretty hot and heavy affair the past few years.   


Reagan:  I worry about the day when my Pip understands she is different. Do you have a strategy on how to explain it to Lamp? Have you had the conversation with her older sister yet?  

Miggy:  Me too....I think that's one of my main worries.  My heart aches for some of those future conversations.  I don't necessarily have a strategy on how to explain it other than to use age appropriate honesty.  My adult answer is "I don't know why you're different...I hope that's something you will come to peace about and maybe even receive an answer from your Heavenly Father as to why you were given this particular life challenge.  We love you and have always loved you just the way you are."  When she's 3, I probably won't say that...but I won't give her a silly or trite answer either.  At least that's the plan.  As far as talking with big sister we started that conversation as soon as we had all the information we knew we were going to get while I was still pregnant.  We would have family home evenings about bodies and how some bodies are different.  We told her Lamps body would look different and explained to her with words and pictures how it would look.  We even found some videos and pictures of other kids on line with shortened or missing limbs to show her as well.  And while there were times she seemed a little distraught over it, I have to say she's handled it really well.  She loves her sister.     

 


Reagan:  How do you feel that Lamp is an important part of your family?  

Miggy:  This is where her condition doesn't really come into play for me...she's an important part of our family just because she was born to us...does that make sense?  She's the little sister and our little baby and that's special all on it's own.         


Reagan:  What has been the hardest thing to adjust to regarding her unique condition?  

Miggy:  Well I think the big adjustments might come down the road.  So far the hardest adjustment was just grasping the initial news.  Right now she's receiving physical and occupation therapy and she's gone to a limb clinic a couple of times...so there have definitely been a lot more appointments than with her big sis, but that hasn't really been difficult.  BUT we're going to be fitting her with a prosthetic arm in a few months and I think that might be the first big adjustment for all of us.  


Reagan:  What are your biggest hopes for the wee Lamp?  

Miggy:  My biggest hopes are that she has confidence in who she is, real and genuine friendships, a strong testimony of Jesus Christ and her Heavenly Father and that she's happy.  They're basically the same hopes I have for my sass-a-frass 3 year old but I know some of those things might be more challenging for Lamp.   


Reagan:  How did you prepare yourself for Lamp's birth? (aside from the obvious packing a suitcase, etc.)  

Miggy:  Prayer.  I prayed a lot.  And I got some priesthood blessings.  I really wanted her birth to be a special occasion.  Perhaps it wasn't wise to set myself up for possible disappointment, but I had high hopes of a good birth and first meeting with her.  And I was lucky because it was a GREAT day.  


Reagan:  Something I've always been very uncomfortable with, is being pitied. I cried pretty much during every conversation about Piper during her first year, because things were just so hard. But since then, things are much better and we're all three pretty happy. I constantly worry that people just think of our situation as sad, sad, sad, and wont be able to see the love and joy in our family. I guess what I'm trying to get to, is do you ever feel like you need to work hard to convince people that you're not just crying and depressed all the time?  

Miggy:  YES.  I totally get that.  But now that I think about it, I guess I can see why people might have reacted that way.  Because at first we were sad.  Of course.  But once we were able to take it in, then move on we were happy because we were having a baby...yay!  And admittedly B and I were sort of on different pages with that as well...it took him a little longer to feel the same happiness that I felt.  But yes once she was born I didn't want people to look at us, or her, as some sort of sad pity case.  I feel like most people don't think or feel that way now, buuuuut again this is something I could see tackling again in the future as she continues to grow and as her development is on a different level than other kids.   


Reagan:  About a year and a half ago, Piper Jane was just smiling at me and climbing all over me, and snuggling sweetly with me. I waited a long time to feel such a strong connection with her, but it was like fireworks. Has there been a moment between you and Lamp that you've wanted to scream for joy because you realize all the hard is worth it? Or did you feel an instant bond with her at birth? 

Miggy:  I felt a pretty instant bond with her.  Which was great, because I did not feel that way with my first.  Like I said, I really prayed a lot and having gone through birth and a newborn before also helped prepare me so I wasn't as shell-shocked this time around.  Although I had a c-section and was high as a kite on some happy drugs I was just in love with that little Lamp from the second I saw her.  I stayed the entire 4 days in the hospital even though I could have gone home early just because I was loving my time with just Lamp and I.  I remember being so excited when they'd wheel her in for her middle of the night feedings...I just couldn't wait to snuggle that little bug.  It was an affirming answer to my prayers to have had such a great birth experience and such an instant bond.    



Reagan:  Basically, I loved all of your questions for me, go ahead and answer any of your own questions that you feel would be helpful or insightful for anyone reading!  

Miggy:  Awww Reags...well I think the question that kinda got me wanting to do this little Q&A session in the first place was well, not really a question, but when I mentioned suddenly feeling so alone with such a rare diagnosis or at least feeling largely ignored in the general world of pregnancy and babies.  And I'm not sure there's a good answer or remedy, but I think doing things like this and having outlets like our blogs to share our ups and downs as moms of special needs kids has been really helpful to me.  And hopefully if there are any other moms out there facing similar issues they'll know two more moms who are also going down the special needs road.  So not really an answer to a question, but just a shout out to the special needs peeps out there.  Holla!    


3 comments:

  1. two power house women! So impressed by you both. And great writting.

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  2. this part: I just want to make this point that we weren't covering her because of any shameful feelings of her, but because we felt very, very protective of her

    YES! YES!! and, hey synchronicity, i just wrote a similar line on my blog tonight!

    such a sweet glimpse into Lamp's life.

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  3. When I think about Little Lampy, the photo of her in that hat is one of the first images of her that comes to mind. That photo is kinda my icon for her - not sure why that one of all the photos you've posted over the years. It's just so lovely and so sweet. Thanks for reposting.

    ReplyDelete