Emotions

The Future, Feelings, and New Friends.

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I’ve had a slew of emotional days this past week.  It’s been a constant battle of “what ifs”, worrying about the future, and trying to appreciate today.  Lately, I’ve just had this feeling that our lives have turned into a ticking time bomb and perhaps this is going to be as good as it gets.  Let’s face it, Lissencephaly sucks.  It’s not curable and it never really “gets better”.  In fact, it might get better for a while but eventually it will get worse.  At least, that’s what all the literature and personal stories I’ve heard from other families say.  Maybe not in those words, but you know that’s what they are saying.  I’ve been thinking a lot about the future and that is not a good place for my mind to wander…

When will seizures start?  What equipment are we going to need to make our lives easier?  When should we move into a new house?  Will I have to miss out on Will’s activities in the future?  Is he going to feel slighted?  Will he be resentful?  Will we ever get to go on vacations?  Are we going to be able to make enough memories for him?

 

…and these questions are just the tip of the iceberg.

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I haven’t talked a whole lot about, my two year old son, Will, a lot in this blog but I worry about how this will affect him constantly.  Luckily, this is all he ever really knows!  He probably doesn’t remember life before Paige and to him this is just his life… his childhood!  I was talking to Andrew today on his lunch break and voicing some of my concerns (he hears new ones, daily).  Today, I told him I was worried about making memories with Will.  I don’t want him to look back when he’s older and remember us being stressed or crying.  While we are going to be very honest with him about the realness of everything, I don’t want this to be his definition of our family.  Actually, I don’t want this to define our family at all!  Sure, he has a sister with disabilities, but he’ll know that she’s more than that.  She’s an undeniable, ultimate being of joy and she loves her big brother more than anything.  One day, he might see his sister have a seizure and other various health problems.  I hope it helps mold him into being a more compassionate, mindful, and helpful person.  Being different, to him, will just be normal.  For being two-and-a-half years old, he’s already very intuitive of other’s feelings and especially his sister’s.  When Paige cries, he runs and gets a pacifier.  If that doesn’t work, he strokes her head and says, “It’s ok, Sissy” and gives her the biggest kiss.  He’s tried to feed her bottles when he can tell she’s hungry and he washes her hair in the bath tub.  I can already see the love he has.  I know that one day, he’ll ask questions and I’m still trying to think about what I’m going to say to him.  Andrew is much better with words and explanations so that’s a conversation we’ll have when it’s time.  I make it a daily goal to show Will how I feel about him, make a memory or two, and give him extra hugs, kisses, and time.  He is one loved little boy!

Another saving grace is knowing that we’re not alone.  Along with our wonderful families and friends that have offered their love, support, and time, we got the privilege to meet four other families in the Pittsburgh area who have children of varying ages (7 months to 18 years!!) with Lissencephaly.  This past Sunday, all of us met in a back room at a Panera Bread and talked, advised, exchanged stories, ate, laughed, and cried (ok, I was probably  the only one who cried) and every family was different and inspiring.  Most of all, they were all GOOD people with absolutely wonderful outlooks on life and family!  I got a lot of useful information and pep talks from the two veteran moms (I will always have bad days, they won’t go away, but things WILL get better and brighter) and compared notes with the other two newbie moms.  I already knew one of the other mom’s and we’ve gotten to be really good friends so it was awesome to see her again!  There were also other men there which was good for Andrew to have people to talk to, as well. It was sooo nice to talk to people who understand what we are going through and didn’t look at us like we were a wounded animals.  Yay, for new friends!

 

No emotion lasts forever and happier days are always ahead.

 

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NO MORE STEROIDS!

A big fist pump to the air was given yesterday after I gave Paige her last steroid injection!  She was an absolute trooper throughout all of them the past four weeks and we’re so thankful that it did it’s job.  Paige is still not exhibiting any infantile spasms and that is still a huge thing to be positive about.  She’s also back to the happy baby we knew and it’s such a relief.  

The first two weeks during her course consisted of a high dose of the steroid (ACTHar) in her thighs twice a day.  With every dose she was given vitamin B6 and Zantac for acid reflux.  During this time, she was a completely different baby.  Her bright eyes became heavy, she never smiled, and she just looked miserable.  You can tell it totally wiped her out and made her pretty zombie-ish.  It was heartbreaking.  Even though we were told that it was temporary, we still feared that it wouldn’t be and we missed our happy little snuggler pretty quickly.  She also ate like a horse and gained about four pounds in these two weeks!  Yikes!

The third week started the weaning process with only one injection a day at a lower dose.  Pretty easy right?!  Well, this was actually the most miserable and exhausting week. Sleep didn’t happen and Paige was up every hour and was at her most ravenous and was very fussy – we called this her ‘roid rage.  She was still pretty miserable and didn’t want to be moved around a lot.  The notes from her therapists said that she was: not alert, not engaged, not totally responsive, and rigid.  Our saving grace was actually a pacifier, that we dug up in her sock drawer, and it provided a lot of comfort to her and a lot of sanity for all of us!

And then HOORAY! The last and final week!  This past week, Paige only received a low dose every other day with yesterday being the final day.  I’m not exaggerating when I say that her personality changed almost over night early in the week.  Andrew was getting ready for work on Monday and I was making coffee (or something) when he called me over and yelled, “She’s SMILING!”.  

IT. WAS. AWESOME!  

Andrew and Paige always have had a special bond and it was really touching to see how excited she was when her daddy was talking to her.  She was just sooo smiley and alert!!  She hammed it up for her therapists and the adjectives in their notes turned to: active, engaged, pleasant, and feisty.  DEFINITELY easier to read than the previous week’s notes from them.  Her sleep even got back to normal and she was back to snoozing through the night!  Paige also seemed to be stronger and also rolled over from tummy to back with very little assistance. This was HUGE and we let ourselves be happy about this.  Celebrating the good times is definitely more fun then worrying and fretting.

Buuuutttt, it happens…

As a family, I’d say we’re doing pretty well considering it’s only been a month and a half since diagnosis.  However, since appointments and hospital visits have been slowing down I’ve had some more time to think and I’ve had some pretty bad days.  For so long, we’ve tried to look on the bright side and keep the negative thoughts at the back of our minds but this past week I couldn’t handle it anymore and I let it out.  

I let myself feel.  Whatever emotion I had, I let it out.  To be honest, I’m not proud about a lot of the things that came out of my mouth or in my head.  I can’t tell you how many times I screamed “IT’S NOT FAIR!” and asked myself “why MY baby?”.  I felt sorry for myself because I tried to do everything right during my pregnancy and my baby has a terrible diagnosis while some women do drugs during theirs and have completely healthy kids.  I know it’s not right, but I’m being honest and it’s how I felt at the time.  Why any baby, really?  Why any family?  Acceptance with the diagnosis comes in waves and it’s been a struggle.  I’ve always accepted Paige but I’m having trouble with the “why”.  While I can go about my day and have genuinely happy moments, there is a constant heaviness in my heart that won’t go away.  I’m not sure it ever will.  I’m hoping and praying I get to a point where acceptance isn’t such a struggle and our “new normal” becomes more natural.  

Thankfully, Andrew doesn’t really let myself feel this way for too long.  He has been such a beacon of strength for me (and everyone, really) during this time and encourages me to snap out of it.  While I have been pretty faith-based and look above for guidance, Andrew turns to science and medicine for answers.  In that way, I think we balance each other and it’s how we keep each other grounded, hopeful, and strong.  I think I definitely needed to cry it out, but after a while it’s not productive and it certainly isn’t good for Will to see in a puddle of my own tears for days on end.  We are very mindful that this whole situation affects him and we want every transition to go as smoothly as possible for our family. 

If there’s anything I’ve learned, it’s that we must live in the now.  Right now, we are okay.  Right now, we have a lot to be thankful for.  And that makes me feel so much better.

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