Monday, March 19, 2012

Special Needs - When did that happen?

When the $#&*&@ Did We Become Special Needs Parents?
Since Will's 15 month check up  nearly two years ago I have spent serious brain power avoiding the word special needs. I had convinced myself that He was just in some therapy, things would be fine. Those AFO braces are just a little helper for our guy. He won't need them in a few years....
Since July 5, I have fumbled around trying to find a word to describe Will and our new situation, diagnosis, health crisis… whatever. I could never lump him into the special needs category because that would mean all this was real. It would be a label, a stigma even.
I’ve tossed the words around, quietly, I guess trying them on to see if I would use them. How I’d use them, would I just tell someone that so I didn’t have to go into detail and avoid a public (embarrassing) break down.
This last hospital visit – ug. It really sucked. The previous hospitalizations have been quick, understandable (vomiting, ear infection/fever) but this one was just an unexplained fever. What the heck?? And it was a high fever, 103.9. Where did this come from? Why? Was this a progression of the Mito disease? Come to find out a couple of kids in his class had the same thing.
So a reminder, research has indicated that the lesions on Will’s brain can be caused around viral infections, high fevers and they can also just show up without any reason. Research also indicates that if we can get Will on IV fluids quickly during these infections that there is a chance of reducing or eliminating the deadly effects on his brain.
Calling Will a special needs kid means labeling him into a very very wide category of abilities. Before all this, I had my own narrow minded views of what special needs kids were like. Not my son, he wouldn’t ever be in this category.
So all this mental fumbling around, a hospital visit, a very unsteady Will and then I read two articles…
Focusing on the first article, what the author describes as characteristics of special needs parents:
-I am tired.
-I am jealous.
-I feel alone.
-I am scared.
-I wish you would stop saying “retarded, Short bus, as long as it’s healthy” (I actually disagree with the last one in some aspects.)
-I am human.
-I want to talk about my son / It’s hard to talk about my son.
So, based on these descriptions of what special needs parents experience, two things solidified in my head, punched me in the gut, slapped me in the face:
1.      I (We) are Parents of a Special Needs Son. A beautiful, amazing, wonderful, incredible little boy.
2.      I can’t work on maintaining friendships that can’t put forth understanding on their part where we’re at now.
He has a degenerative, progressive disease. He has a list of special needs, shorter than some, longer than others. This is not going away.
One day, it’s not going to be ok. This is the reality of our special needs child. I’d add to the list above “It’s not going to be ok” – it’s not. Every minute of the past few days have been consumed with, is he going to get back to baseline? Is this it? Will he wake up tomorrow and not be able to walk?
No one, including myself, wants to discuss it. I know the easy response is that he’ll be ok. I can’t fault people for saying that. Hell, people ask me the dreaded “How’s Will doing?” question and I just smile and say good or great.
I ran into a guy I knew from college at a funeral a couple weeks ago. He sat down and asked, “So, what’s new?” I actually said to him, “Well… two answers for you, not much or where to start?” We both laughed and the turned our attention to other conversations. He was just making small talk and I can appreciate that. But it’s kind of the same thing when you ask, “How’s Will?” – I know you care otherwise you wouldn’t ask, but I just don’t know where to start.
Heck, some people who are my friends don’t even take a few minutes every once in a while to read the blog. I know that sounds terribly narcissistic, but I’ve realized that if you don’t truly care about my special needs son then our friendship isn’t really what I thought it was. This is my life now. It’s left us black and blue. I’m ok if you can’t handle it, I can barely handle it. Reference item 1 on the above list, I’m tired. I can’t work on maintaining friendships that can’t put forth understanding where we’re at now. I didn’t ask for this and you didn’t either, but here we are. You don’t have to know anything about the mundane aspects of his meds, dr. appointments, latest hospital visit, but a genuine and honest caring question goes farther than you could imagine. I’m not whining, just one of those realizations that hit me while reading the articles.  
I should note that you shouldn’t take offense if I cancel, miss plans, avoid you or flake out. I know those are not good characteristics of a friend. I’m trying, but sometimes sh*t happens and I have to make Will, his needs and sanity the priority. See item 2, I'm jealous. It's hard to be around pregnant women, families with kids running and jumping etc. Some days I'm just not mentally tough enough to hear/see everything.
I fake myself out every day that this special needs kid is going to be ok because he’s doing so well. We’re going to be the one that beats it, that makes it, that this wasn’t the right diagnosis. FALSE.
Maybe we won’t beat it or make it, but if I sit back and think about it – maybe it really is happening. Maybe we do have a little miracle in front of us and don’t even know it.
I just reread my post and realized it’s a hot mess of emotion and fairly difficult to read. I told myself I wouldn’t self-edit because then I’d lose the honesty of our life and one day I want to look back at this blog as a scrapbook of sorts.  
On the scrapbooking note, I started my new schedule today, 10 a.m. – 4 p.m. It was liberating to not feel like a guilty machine. Will was able to get some much needed extra sleep, I was able to talk with his teachers without checking the clock, I picked up/dropped off dry cleaning and made it on time. I got to pick Will up and spend more time with him, cleaned up the house and made a pretty good dinner! Maybe my mind is more clear today which is why I threw up all over this blog. J


  1. Lori,
    I can't tell you how much I appreciate this post. So much of the time it feels like a tight rope. Wanting to ask, not putting you through asking. The painful reality is so harsh even for those not smack in the eye of the tornado (sorry for using a tornado analogy on a day like today when there are actual tornados. lol. so corny). I can never imagine understanding what you are dealing with, but I do consider myself to be a good friend and while I may not always say the "right thing" (because that changes from moment to moment just like this blog post does), I think its better to say something than to avoid. I hope others get that too. Feel free at any moment to tell those friends around you what you need. I can speak for myself in saying that I really want to be there for you in ways that I can. So far, it seems like we've been able to honestly navigate things in that way. I feel your busy-ness, but if you want a regular playdate, we're here ;) Everybody needs a margarita and a playdate every now and again. My kids both adore Will. We could make that happen. But sometimes I imagine the whole "making a new friendship" thing might be too much work mentally. It takes effort to get together with someone new and forge some kind of friendship, make small talk, all that crud. I can kind of imagine that could be overwhelming when just trying to make it through the day. Such a two sided coin...all of it. Here we are. Sigh.

    A friend of mine just had a baby girl a week ago that was born with an unexpected surprising special need. She was born without one hand. Its just not there. And no one expected that discovery. She told a few of us about it, but didn't make it public until she had time to process. After a week of reflection, she "announced it" publicly. And she told people exactly what she wanted (no pity, view her like other children, etc.) Because quite frankly, most people suck at knowing how to deal with difficult situations. And most people want to do and say the right thing. And your real friends will hang tough and take the freak outs, missed get together, general drama of the situation. Because just as you said, "here we are."

    Big hugs to you. Keep sharing with us how to best support you. Knowing you has been "worth it."


    1. Beth-
      As always thank you for the wonderful comments. It really means a lot to us to have such support. Believe me when I say a 'rita play date sounds awesome. Let's work on that one. Maybe a Berryhill dinner date one night? We can email offline. BTW - a lot of friendships are really worth the effort :-) Some I have come to realize are not. I feel like I can post that here since many of those who are not worth the effort will never read this :-)

  2. Lori,

    I read your blog on a regular basis and altho I've only met you a few times I think of you and your family every day. I am consistently impressed by your love and strength in this very fragile situation. My heart breaks because I know that yours breaks on a daily basis.

    I believe with all i have that Will is a very lucky little boy to have you and your husband for his parents to travel this journey with him.

    Please never doubt that there are many of us who care for you and are sending strength and prayers your way.

  3. Lori,
    I too read your blog several times a week. I had never heard of mito disease until I heard about Will. Wow! What an impact he's made on my life!! I have told so many people about your story. What strength you all have. I am constantly reminded when I see Will's sweet, smiling face. You don't know me, but I feel as though (through your blog) that I know YOUR family. Thank you for inviting me into your life. There are many times I want to make a comment and don't. Sorry for that. I won't pretend to know what you are going through. I have no clue. However, I do know how blessed you are in so many ways. Will is PRECIOUS!! He is a beautiful boy!! God chose YOU to give Will to. He chose the best parents to be this wonderful little boy's mother and father.
    On a different note, F**K all of those people who say they are your friend. You don't need them. They are energy takers. I'm sure you have found that it's easy to concentrate on the ones that are true to you. Those relationships don't take work. On one of your posts you mention your parents or I have seen pictures of Will with his grandparents. Do you know how blessed you and Will are in that alone?? I have two children. They never got to meet my wonderful parents. My mother died at 63 and my father died 14 months later of a broken heart at 65 years old. 2 months later the only grandmother (who my sisters and I were close to) died. The entire administration of my family was gone in a year and a half. I hadn't started my family before all that I found my strength and support in....died. Enjoy this time you have with Will and your family. You don't know what you miss until it's gone.
    Sorry, got off on that...I guess what I'm trying to say is that everybody has SOMETHING...yours just sucks more than others. (putting it bluntly)
    Really there is nothing anyone can say, but I want you to know that I pray for you and your family, I pray for God to give you wisdom and strength, for Will to have a brother or sister one day, and pray that you and Will have many good days. Hugs and Smiles....

  4. Well said Lori!! Always thinking of you guys and praying for your sweet little man!

  5. I read your blog every chance I get, sometimes I just don't know what to say or what qustions to ask. But, I hope you know I think about you guys all the time and will always be here if you need anything at all!

    Lots of love,
    Lindsey K.

  6. I read your blog every time you post, as my little blogger station notifies me. I only found out about Will's illness recently, but you are constantly on my mind, always in my prayers. Your little guy is about the same age as my own daughters, and my heart aches for you. I haven't commented yet (despite having read your blog for a few weeks now, and going back and reading from the beginning) because I don't always have something comforting or witty to day. Will is adorable - I hope to someday meet him!

  7. Hugs. I think about you, Neil, and Will often.

  8. Lori,

    We are so glad to hear that Will is out of the hospital and on the road to recovery. Pat has been sending us updates every so often and Justin and I got a big kick out of Will's new mohawk. Thank you so much for taking the time to write this blog. I'm sure it is difficult to "spill your emotional beans," but we are so appreciative for all the info and insight. I’m so glad to hear that you started your new schedule! Working mothers are my heroes…I don’t know how you are able to juggle it all and make it work. Hopefully this will take some stress off of you. Who knows, maybe you’ll find some free time for a massage; but that might be wishful thinking right? Hope we get to see you guys soon. We’ll try to get a plan in action in the near future. Please give Will a big hug and kiss from us.

    -Uncle Justin and Aunt Erica

  9. Very well said...really didnt read like throw up at all! Although every kid is different, i do understand the plethera of emotions you feel. My very wise nurse friend told me last week, "you eat an elephant one bite atta time"! Hugs and prayers!!

  10. Lori,
    Just wanted to let you know that I read every word of your postings, and although I have never posted on your blog before, I hold Will and you and Neil in my heart every day.

  11. oh my goodness Lori, I need a minute for this one...unfortunately I have raging PMS right now so I can't stop tearing up long enough to type a decent comment:) (I know...too much right, but I swear it's a thing) Tomorrow...


  12. Lori-
    I remember the day that I came across a link to your blog on FB. My first thoughts when it popped up were "Awwww, Lori! Haven't seen that girl in ages! I bet she's doing great!" And then I proceeded to read every last word on your blog from the very first post to the last one, and was audibly sobbing at my desk at work. It took my breath away.

    Let me preface everything that I'm about to say that it is all coming from my perspective. I'm not a special-needs parent, but I am a single mom. Both have challenges, and both are blessings.

    It may be difficult to see on some (or many) days how this could possibly be a blessing. But I guarantee that Will has blessed you and your family more than you would have ever imagined. Guess what - he's also blessed thousands of people all across the world. I know that after finding out about Will's diagnosis, I hugged my 3-year old little girl extra hard that night. I have been making a conscious effort to spend more quality time with her and less time getting the zillion other things done that I need to do...those things can wait. I have more patience for her.

    I've told several people about your blog and your story, mostly to say "You wanna see "strong"? Wait till you see this girl!". I pray for you and Will and your family and his medical team every day. Ruby prays for Will too. My heart hurts that you're going through this, although your strength and dignity is an inspriation to me.

    A friend said to me about 3 years ago - "Just take everything one day at a time. If that gets too hard, take it one hour at a time. If that gets too hard, take it one breath at a time. And if that gets too hard.....let me know and I'll breathe for you." We're holding you and your family up in prayer - just love on that little blessing of yours.


  13. I am overwhelmed by all the comments, emails and honesty. I told a friend I think I unloaded about a month's worth of fretting - in reality, it was probaby nearly two years worth of it... Thank you guys for the support and love. We are incredibly blessed, lucky - if it wasn't for our little special needs boy, our lives would be beyond lacking. Cheers to elephants, margaritas, good friends, strength and deep breathing. :-)
    Love Lori

  14. Lori,
    Everytime I see you I'm kicking myself afterwards that I did not say the right thing, but I know the truth is there are no words to take away the pain you feel. No words could convey how sorry I am for the strife you've been through and will go through. It just isn't fair. And no words can truly convey how continually amazed I am at your family and the lives you, Neil and Will have already touched. Y'all are awesome and you are always in my thoughts and prayers, everyday.

    Love, Sarah

    1. Sarah, All our friends -
      There is absolutely NO right or wrong thing to say. This isn't a situation that anyone should or would encounter on a daily or weekly basis.

      Here's the real take away - when we see each other, you care enough to ask geniune honest and heartfelt questions or statements. There's a real difference in that versus not accepting that this is our life and not caring to be part of it.

      I can't stress enough that there simply is nothing people do wrong or right. Simply put, we all have limited time in our lives and let's surround ourselves with the people that really care - no matter how it comes out.

      I realized that by posting this blog I made people second guess our relationships. When in fact, I was simply "preaching to the choir" - there isn't anyone who reads this that falls into the category of "not understanding" - it's those that simply don't get it.

      Anyways, thanks everyone for your comments, support and love.

  15. My take on the situation has been very polyanna...I like to think that Will is the exception and that he is going to blow all of these horrible predictions of his future out of the water and be giving you sh*t for posting all of this personal information about him when he's a teenager and dating Abby:) You may or may not know that on a surface level Abby and Will have had a lot of parallels...a bazillion ear infections, tubes, cronic constipation, a love of antibiotics, a 10 day hospital stint for unexplained very high fever, upside down sunglass syndrome;). I think this is why I sometimes feel like Will is just going to be ok one day, even though in that place in the back of my head...I know...and it totally wrecks me. I can't even begin to imagine what you guys actually go through on a daily basis, but Josh and I and the kids want to be here for you guys for the long haul. Every night Abby prays "Dear God, please watch over our friend Will and help make his sick go away" Who knows?...polyanna...for now this is where I will stay until you need me to be somewhere else:)


  16. Lori, have I told you lately just how proud I am of you?

  17. Lori-thank you for being so brutally honest on your posts. You really make us think twice about appreciating every moment we have with our kids. We just see Will as a happy kid who is doing the same things as the other kids at school at this point. They were having a ball at gymnastics, Arts Alive and everything else. Hopefully with your new schedule, you'll have a chance to see some of it. I know someday these things will change for Will, but for the here and now, he seems to be having fun with his friends and just being a normal kid, whatever that means! Does he ever throw a tantrum?!

  18. Lori, As a mother of a Leigh's disease child I understand EXACTLY how you feel. I always thought he will catch up. I started saying special needs at probably 4 years old.Other people thought it or said it way before me I'm sure. During Mito awareness week I can't wear a bracelet or green because I'd be afraid of a breakdown when someone asked me what it stood for. And I also think Ralph will beat this. THere is no way God would take such a sweet boy with such a sweet smile from us. But then i know it happens every day. Every day someone loses a sweet child, so what makes me think mine is any different. We are not in and out of hospitals like yall are, but Ralph is further behind and has more delays than Will. Before our diagnosis my husband would say," He has challenges, but it is not like he has a life threatening illness". Then months later we were proved wrong that yes, he does have a life threatening illness. And one with no treatment or cure. I understand how you feel. I need a blog to vent!! But am not computer savvy and have little time, but I am happy to share with you. We are in the same boat. One neither of us wants to be on. :) Prayers go out to your family. Hang in there. Carie Kuhn Savannah, Ga.

  19. This post really touched me. We've just entered the world of "special needs" and it seems with every doctor's visit, there is more bad news. We got a suspected mito - send to Cleveland or Atlanta for biopsy at our last neuro visit. My son has autism spectrum disorder too(but some suspect mito instead). We're different now. I'm different now. Even if it isn't mito, I will have a child with special needs for the rest of his life. It is what it is, but it is fricking hard. Thanks for giving words to my thoughts. Fantastic.