We have wanted answers for a long time.
For her bouts of weakness, her extreme fatigue, her ease to cry and lack of balance.
She has been poked and prodded and tested.
And then things will get better for a bit. We will see smiles and energy and strength emerge and give her a break from doctors.
Then it all happens again and we begin the appointments, the searches, the tests
and arrive at where we are today.
With the right tests,
finally.
If only I wanted the answers they are bringing.
My little McKenna is on the road to being diagnosed with a mitochondrial disorder, a rare, genetic disorder that doctors now think is what took her sister from our family and is also related to Ashlyn’s autism.
I have debated on blogging about this until things are more certain but it is where we are right now.
The last few days have been a fog of reading and researching and piecing together information and truthfully, I know the doctors are right. That tug that they may be on the wrong track? It’s not here this time. That knowing that you are reading about your own child? I have it.
My mind is caught on words like degenerative and inherited from the mother and concerning results and I find myself doing what I have told so many struggling moms to concentrate on, just putting one foot in front of the other.
It is all I can manage at the moment.
I have spent the last four years trying to perfect the art of not burying myself in the past.
I am not sure how to ignore what may be our future as well.
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I'm Jessica, 30-something mom to five, four in my arms and one in my heart.
No words of wisdom here, just a hug coming to you from me. xo, Anna
anna see recently posted..Word!
Twitter: aninchofgray
Thank you so much Anna.
Sending you a heart bursting with love, two shoulders for you to cry on if you need them, and every bit of positivity I can gather.
I’m right here, my friend. Just a phone call away. Always. xo
Nichole recently posted..We Have to Start Somewhere: Kids and Decision Making
Twitter: NicholeBeaudry
Thank you so much Nichole, can’t tell you how much your friendship means.
I don’t know what to say other than I will keep you in my prayers. Stay strong.
Sending you lots of love and strength.
Hopefully this will give you answers and a direction. xo
Shell recently posted..Pinterest Pressure: Crayon Hearts
Thanks Shell, it does help to finally be getting some answers to explain things but was hoping for different answers I guess. I know it is all a process though and I will adjust to it sooner or later.
You’re breaking my heart. Please know that I’m thinking about you and your Family. And give a huge hug to McKenna for me please.
Your Friend, m.
Mark recently posted..Soon
Twitter: Rsimplelives
I will, thank you so much Mark.
You and your beautiful family are in my thoughts and prayers. I’m happy that you have answers… I know how important they are.
Christina recently posted..Dear Mom (A letter from my 9 year old son)
Yes, we really did need to get answers, now we are on the journey to try to figure out how to do this.
I so hope you are comforted with answers soon. I so wish there was something I could do…
Life As Wife recently posted..How Motherhood Helped Me Get My Swag Back
Twitter: Samkanatzar
You are doing so much just by being a friend. Thank you.
Praying for McKenna and your whole family.
Thank you Tim.
Sending you lots of love and positive thoughts!!
Janae recently posted..Looking in the Mirror
Twitter: janaekrell
I don’t even know what to say. I am sending big hugs to you and your family and hoping that the answers will give you a place to move forward to.
christine recently posted..A Step Back
Twitter: anditislove
Sending prayers, and positive thoughts your way and to your adorable, bright, vibrant, full of life daughter!
Melissa recently posted..The Weekends
I’m so sorry to hear this. I’m praying for strength for you all. Sending you a big virtual hug.
Melissa {adventuroo} recently posted..From Hate to Love: A Running Journey in the Making
Thanks so much Melissa, truly appreciate it.
Oh I am sorry to hear this. You’re in my thoughts! big big big hugs.
jenn recently posted..the things they leave behind
Twitter: librajenn
Sending you lots of love, strength and prayers my friend.
Hugs to you. xoxo
Rachel {at} Mommy Needs a Vacation recently posted..The Pinot Noir Summit
Twitter: mommyneedsvaca
Thanks Rachel, if things don’t turn around soon I’m heading to California for wine.
Oh my gosh! Oh honey, I’m so, so sorry. Praying for you and your family. Hugs and love to you all…
NotJustAnotherJennifer recently posted..It’s Been A Week, And I Have a Question for You
Twitter: midwestmomments
Sending you hugs and strength and all of the positive thoughts I can gather. xo
Twitter: angelaamman
{{{BIG HUGS}}}
I know we traveled very different roads to get a diagnosis, but it doesn’t matter if your child is 5 days old, 5 years old, or 50. It’s scary. It’s mind-numbing. It’s heartbreaking.
You are not to blame.
You are not alone.
Dana K recently posted..Birthdays, Adventures, & #VlogTalk
Twitter: TheDanaK
Thank you Dana, knowing you are here and that you understand means SO SO much.
Happy for your relief of working toward a diagnosis, but sending strength and warmth for your journey which you walk with such courage despite all the challenges you have faced. The road seems to always be twisting and turning hoping you find a smooth straight patch here very soon. Hugs.
Shannon from ‘mynewfavoriteday’ recently posted..11 Questions and one for you.
Twitter: Newfavoriteday
It does, I would really like to just have a smooth ride for a bit but I don’t see that happening any time soon. Thanks for your support.
Sending love, love, love to you and your precious girl.
Twitter: awaywegonancy
While it’s a different beast, my oldest was diagnosed with type1 diabetes a year and a half ago so unfortunately I know about chronic illnesses. Sometimes the answer is the scariest part, then you can begin to live alight again in your new normal. Sending love and prayers.
C @ Kid Things recently posted..Friends From Afar
Twitter: kidthingsnet
Sending some strength to help you and your familiy get through this difficult time. I hope there is some comfort in finally getting the answers to so many of your questions.
Finding My New Normal recently posted..A Great Idea, Thanks To You!
Sending you hugs and positive thoughts.
Diane (LoCo_Mommy) recently posted..Coulda, Woulda, Shoulda…Just Do It.
Oh, Jessica, I am so sorry to hear this. Sending much love and strength to you. And my positive thoughts, always.
xo
Cheryl @ Mommypants recently posted..A change in uniform
*hug you*
I am so glad you have answers.
Answers about Makenna and Hadley and Ashlyn.
Now?
I know you have the strength to go forward!
You are one of the strongest people I know!
oh Jessica!
I have so many things I could say…but I don’t want to say something trite like it will all work out and don’t worry…
At least now you know what McKenna is dealing with and you guys will be able to help and get her what she needs…
I read the link and it all sounds so uncertain, just a big waiting game…
Thinking of you friend…sending love and prayers…
Not a Perfect Mom recently posted..Peek A Boo Panties*
Twitter: notaperfectmama
Sending hugs and well wishes. Hang in there.
Ali recently posted..WTF Wednesday – The "Humiliating Myself for A Paycheck" Edition
Twitter: suitcasetricks
Jessica. I’m so very sorry. I know your heart hurts. Sending prayers and strength.
Rach (DonutsMama) recently posted..Monday Listicles: My Passions
I’m so sorry. This isn’t fair and I wish this wasn’t happening to you. Keep on with those feet. It’s what you can do right now.
Oh crap, Jessica. I am so sorry.
Runnermom-jen recently posted..Nothing
Jessica, I am so sorry. I have no other words. Thoughts and prayers to you & your family.
Jackie recently posted..Big Ol’ Love
ACK!
I have a son with similar symptoms but I haven’t gotten a diagnosis. We’ve been referred everywhere it seems…not the geneticist though. I don’t know if I want to do that yet…you know?
I’m sorry about the diagnosis. Are you glad you know what the deal is now? Is it better to have answers and know how to help?
JoAnn recently posted..Pirates and Broccoli
I don’t know JoAnn, I thought answers would be helpful but right about now I would like different answers, you know? Mito is a very strange thing as well as no two kids are alike. The doctor we are currently seeing is a physical medicine specialist but he has a reputation for solving difficult cases. We are seeing genetics next so that may be a step for you when you are ready. If you want to talk more feel free to email me. How old is your son?
I’m sure it’s a mixed bag that you are getting answers finally. On the one hand, at least you can deal with it and you know what you are up against., but on the other hand it just sucks. I am so sorry. Hugs and prayers for you and your family.
Stacey recently posted..My Passions
So sorry to hear this. Hopefully now that you have a diagnosis you can get her treatment and ultimately a cure.
When is enough enough? I’m so sorry Jessica. You’ve been strong for so long and have endured more pain than many women I know. Big hugs to you and Ashlyn…I wish I could do more.
Kat recently posted..Man Shoes Discussed
I am actually wondering exactly that right about now. Hoping that I won’t be this bitter soon and can start moving forward. Thanks so much for your support.
I’m so sorry sweet friend. Thinking about you all and prayers always. xo
tracy@sellabitmum recently posted..When You Don’t Produce A Tomboy…
Twitter: sellabitmum
I’m so sorry to read this. I do so hope that there will be clear answers and good treatments available for your little McKenna xo
Sending you a gentle hug, my friend. I hope that the test results may help provide some closure to you and your family. But I also know it is those very results that can open a whole new chapter of questions.
Sunday Stilwell recently posted..Interior Decorating: The Autism Edition
Twitter: xtremeparnthood
Yep that is exactly where we are, somewhere between one answer and a million more questions.
Oh my gosh…I have no words. Sending love and strength and please call me later if you need to vent…
xoxo
Practical Parenting recently posted..Discipline Without Agression
Twitter: katiefhurley
Jess, There’s nothing to say, other than I am here for you for whatever is to come. I hope you can find comfort, at least, in getting some answers and that the path forward begins to clear.
Jennie B recently posted..Scenes from My Life
Twitter: wantapeanut
Oh, Jessica, I am so, so sorry to hear this. My thoughts are with all of you and especially little McKenna!
Jocelyn | ScooterMarie recently posted..Oh well, I got a story
Twitter: _ScooterMarie
I will be holding your family in my prayers!
JDaniel4s Mom recently posted..Muffin Tin Monday- Valentine’s Day Robot
No advice, no words of wisdom, but lots of hugs of support. Thank you for being brave and sharing. Your words often help me, so I am sure they will assist others. Prayers and hugs.
I’m so sorry to hear that you’re going through this, Jessica. I hope you get a final answer and you can move forward knowing how to treat your daughter.
My heart hurts for you.
molly recently posted..Sometimes the internet can be ugly
Twitter: adayinmollywood
Oh my, I’m so sorry that you’re going through this. As hard as it is, just got to try and not ruminate over worse case scenarios. If things do go horribly wrong then that’s when it’s time.
Diane recently posted..Healthy Dinner Crock Pot Ideas
WhatEVER you need…whatever, I will do. Let me know.
Twitter: Taminginsanity
Oh lovely lady…
Love to you. All that I have.
Lori recently posted..Loud and Proud
Hugs and positive thoughts your way. And love. Lots of love to you and your beautiful family. xo
Alison@Mama Wants This recently posted..Mes Passions
Twitter: AlisonSWLee
My heart breaks for you
I’m not sure if this helps or is at all anything you’d want to look at or even if it’s pertinent, but I saw it the other day and the word “mitochondria” stuck in my head…this is a lecture by a woman with MS which has a lot to do with mitochodria, apparently…she is a doctor and this is what she did to help her situation…again, not sure if it’s pertinent or wanted, but I just want to help in any way I could…
http://www.youtube.com/watch?v=KLjgBLwH3Wc
XLMIC recently posted.."Sedate" is NOT my middle name…
Twitter: xlmic
Wow, thank you so much!!
You are in my heart and prayers…as always…but even more now.
praying for strength for all of you.
Katie recently posted..being ready
Twitter: ksluiter
I hope you see all the love that’s here.
I hope you and your precious girl and your whole family feel flooded with it.
Because you are.
All the love is here for you.
When you’re ready.
And even when you aren’t.
julie gardner recently posted..Today call me well-aimed
Oh Jess…I wish I could offer something that would help ease what you are going through other than to say that we all are thinking of you guys and rooting for a solid solution soon.
liz recently posted..5 reasons why we all need ghost writers
Oh sweetie…I wish I could hug you right now. I cannot even imagine how hard this has been on your whole family, and even to have answers isn’t any easier in some ways.
Prayers and good thoughts that you will figure this all out and move forward helping your baby feel better.
Sherri recently posted..The Long Goodbye
Surrounding you with prayers. I wish I could give you a hug, but know that I’m doing so virtually.
Julie @dutchbeingme recently posted..#Mamavation: Another Monday…
All I can say is I’m sorry. I’ve read a lot about this disorder and my heart goes out to you and your family. There is another family I know -”Lost and Tired”- on FB and their blog where they talk about one of their sons possibly being diagnosed with this. Actually he is diagnosed with it and they’re doing all they can to help him. Anyway, I will sincerely pray for all of you – Good luck….
Margie recently posted..Autism News for Friday, February 3, 2012
Oh, I’m so sorry you’re facing this. Sending love, prayers and a shoulder for you to cry (or scream) on. (((hugs))))
Jana A (@jana0926) recently posted..#FineChinaFriday
Twitter: jana0926
This sucks and I am so sorry you are facing such heartbreak. Sending your love and light and humor where ever you can find it.
Katybeth recently posted..February 6: Lame Duck Day, Waitangi Day, Frozen Yogurt Day
So sorry to hear about your struggles. Our little boy was diagnosed with Leigh disease which is terminal so we just try to take it one day at the time and enjoy our time with him.
Feel free to email us if you want or have questions.
Be strong.
Thank you so much for responding Sebastien and for leaving your email. I may contact you as we get further down this road.
I have no words of wisdom, except to let you know you and your family are loved and prayed for <3
My heart is breaking, but at the same time thanking god Ashlyn has you for a momma. Few people have the strength that you do.
Thoughts and prayers are with you Jessica…
Kate F. recently posted..The Golden Years of Parenting
Twitter: katefineske
Sending you lots of hugs and prayers.
Nika M. recently posted..Fingers Crossed.
My heart aches for you right now, my friend. I’m so sorry to hear of this. I wish there was something I could do.
Mrs. Jen B recently posted..Red Velvet Whoopie Pies
I am sending you hugs. My thoughts and prayers are with you all too. I so wish that I have words of wisdom.
I have always thought that there would is some missing link of medical information which would explain Jake’s trisomy 21, his hydrops, his death and Sawyer’s death. Knowledge does not necessarily bring peace and I wish/hope that it will help the doctors protect Mckenna. I wish there was something I could do to help. Take care. xoxo
Lanie recently posted..Things People Say (part 2)
I am so, so sorry to hear this. And, although I am sure it is good to start getting answers, I truly wish you had gotten a different one! Prayers for you and your family, and a hope that they are able to find treatment that will help McKenna’s life function better.
Stephanie recently posted..How to become even MORE addicted to Pinterest!
Twitter: supermomboots
I’m so very sorry, my friend. My heart is with yours.
{I know that your support system is strong, but please know that I’m here.}
xo
Galit Breen recently posted..Together Quiet
Twitter: galitbreen
You are in my heart and my prayers. I know that whatever is down the road, you will fill that little girl with all of the love in the world.
I hope you feel the collective love and support of all the people who care about you here. Always.
Jennifer recently posted..Falling Out Of The Family Bed
I am so very sorry for the tough time you are going through right now. I will say a prayer tonight for you and your little one. {{HUGS}}
Amanda D. recently posted..Is a Pin Like a Poke?
My heart aches for you. I wish there was something I could do.
Twitter: KimberlyAMuro
I’m so sorry you and your family are going through this and wish I could help. I’m sending you positive thoughts and a big hug. XO
Karin @Mommy’s Paradise recently posted..There is one thing I can do blindfolded and I never screw it up
Twitter: mommysparadise
I do t have much to say….
Just prayers of love and strength from across the ditch
Xoxo
Keep talking we are all here for you. Promise
Kimberly recently posted..While I Was Up Nursing My Gallbladder, You Were Sleeping
Twitter: momgosomething
How scary for you all!! I’m glad you are finally getting answers though. And you’re right…one step at a time. Hang in there!!
Kmama recently posted..Baffled Beyond Belief
Oh.
My beautiful lady.
I have chills for you.
If you think of anything we can do, other than pray for your heavy heart, please let us know.
I am so very sorry…
Alexandra recently posted..Winner of The Ruins of Us
Getting a diagnosis can be scary, but I hope it will provide you with the answers you need.
One foot at a time is all we can do sometimes. You and your family are in my thoughts.
Evonne recently posted..I’d congratulate myself, but…
Twitter: _MamaJules_
Oh Jess… All I can do I send love and more love. Sending you at Your family strength and love.
Twitter: Periwinklepapi
I really feel sorry about reading this, but I honestly hope that things will be better. I think this is a good way if you do some research, sometimes the doctors think that the actual situation is a routine but an intelligent person like you could be an expert in the scene after a couple of months of research.
Catwoman recently posted..esztétikai fogászat
Jessica, I’m at a loss on what to say. I’m sorry sounds to severe, too much like what you already heard years ago. I guess I’ll say I wish it wasn’t all so hard, I wish it was simple, that in thinking about it there would be no guilt, or concern that some how you are broken too. Mostly I wish there was some sort of universal hardship meter, so that when God, or the universe, is handing out life trials they could see who’s already had their fair share, and pass you by. Sending you love and strength my friend.
Erron recently posted..Why I Knit, and You?
Twitter: errona
I am so sorry to hear this…I am praying for you and your family. Big hugs
My thoughts and prayers are with your family and your beautiful little McKenna. No mother should ever have to go through this. I know there is nothing I can say to make this better in any way but I am here if you need someone to talk to, shoulder to cry on or just someone to rage with. Hugs my friend.
Truthful Mommy recently posted..How to Write a Media Kit for your Blog
Twitter: TruthfulMommy
Hugs to you and your family. It must be hard to research and see all the possibilities but you are a strong family and will work through it one step at a time
Denise recently posted..When You Don’t Want To See Yourself
Twitter: acctodenise
I am sending (((HUGS))) and promises that whenever you need positive thoughts and more hugs that I’m just a tweet away.
Maija @ Maija’s Mommy Moments recently posted..He Will Always Be There
Twitter: MommyMoments
I feel like there’s so much I could say, but I’m not sure how to say it, because “I’m sorry” just doesn’t seem enough. I’m sending up lots of prayers for sweet McKenna, her mommy and your whole family. Hugs.
Jaime recently posted..Happy Sighs
Twitter: jaimesstory
My heart is aching for you. I wish you continued strength and courage.
Jessica @FoundtheMarbles recently posted..Introducing the Blogger Comment Club!
Twitter: FoundtheMarbles
Please remember that the stories you read on the internet are other peoples’ truths but not your family’s. The future is not yet written. And we offer you as much lifting up and support as one woman can stand. Prayers and warmth.
Twitter: AskDocG
I hope you don’t mind, but I’m praying for your family. May God bring you peace of mind and spirit and the strength to carry on. May He heal your little McKenna and free her from the symptoms of this disease.
Tara recently posted..A Printable Valentine Card
Twitter: TaraZiegmont
I am happy that you now have answers that you were seeking. But, my heart breaks for what I imagine you are going through at this time. Just know that you have lots of prayers, lots of support.
I wish I had the words to comfort you. I know that uncertainty is such a hard thing, and not knowing what comes next is never fun. I’m praying for peace and guidance for you guys. I know one thing, you love your kids so much that you’ll do everything you can to help your daughter. Her life will be full of joy and love no matter what.
Twitter: rachael1013
I am sending you much love and strength. xoxo
Tonya recently posted..I Pray…
Twitter: letters4lucas
My prayers for you and your family. When my toddler was diagnosed and the doctor told us of a 6 month treatment. My heart cried as she needs to undergo such kind of treatment but with optimism and prayers. We don’t mind it and things will still run smoothly.
Asher Chriss recently posted..Famous Composers and Their Works
6 months? Wow that seems so difficult. Sending best wishes to your family.
Oh Jessica. I have no words. Sending you lots of love and hugs!
Barbara recently posted..Dear Nathan…
Twitter: babspinfrance
Thank you so much Barbara.
Simply, you and your family are in my thoughts & best wishes . . . share with us what you can – if only so that we might know more.
Twitter: daddyrunsalot
I definitely will John, I debated on even posting this but the support has been amazing. Don’t know what I would do without all of you.
I have no words that will make your hurt go away, so I’ll just offer you hugs and love and unconditional support. Share when and how you’re ready – we’ll be here.
Twitter: SaidKristin
Thank you so much Kristin, for your friendship and unending support.
sending you lots of love.
Devan @ Accustomed Chaos recently posted..Amazing Gluten & Casein Free Meals (It’s Not An Oxymoron!)
Twitter: AccustomedChaos
Jessica – thank you for sharing yet another part of your life with your readers. I had often wondered about McKenna but figured you’d share when you were ready. Sending you positive energy and good thoughts as you tackle yet another hurdle. You are such a strong woman.
Steph, so good to hear from you. Thanks for your thoughts and support. Hope you are doing well.
My heart is aching. I will read up on this so I understand better. I’m sending lots of love your way.
Lady Jennie recently posted..After (Effects)
Thank you so much for all your support Jennie, it’s getting a little easier to cope with as we get more information and form more of a plan.
I’ve read the link and I will pray that your daughter is minimally affected by it. I know that’s one of the possibilities. Hugs.
Lady Jennie recently posted..After (Effects)
Hugs to you, Jessica.
Oh Jessica, my thoughts are with you and your family. ((hugs))
gigi recently posted..6 Creative Ways To Generate Awesome Blog Post Ideas
Thanks so much Gigi, it’s getting a little easier to deal with as the days go by and we have more of a treatment plan. Truly appreciate your support.
Oh, Jessica… my heart aches reading this. I hope you find some comfort though in the fact that you are closer to finding answers and that your daughter is in the best hands possible–yours. Sending so much love and warm thoughts your way. XOXO
Twitter: MyPixieBlog
Oh, Jessica. I’m so sorry you are going through this. Please know my thoughts are with you.
Missy | The Literal Mom recently posted..Friday Public Service Announcement – a Rockin’ Super Food
Twitter: literalmom
I’m glad you are finally starting to get some answers, but can imagine how navigating the connections between losing Hadley and Ashlyn’s autism can be heavy on your heart and mind. Thinking of you.
Don’t know what to tell you, may God give you the strength and the endurance..
I’m so sorry this is taking so long for you to get the results. The waiting is agony. Let us know if we can do anything.
Natalie @MamaTrack recently posted..Things I Love About My Valentine
I am thinking of you and sending love..your heart and love are strong enough to face all of this. Don’t forget you are loved, right here in this space and so are your gorgeous children.
xo
Kir recently posted..Just in time for Valentine’s Day, I’m appSmitten (Giveaway)
Twitter: thekircorner
And I’m now caught up. I wish I were here earlier, girl. One foot in front of the other. That’s all you can do. Oh, that and love that lil girl like you always have. Big fat hug, friend.
MommaKiss recently posted..You’ll Do
Twitter: mommakiss
Take one day at a time…..one challenge at a time……..{hugs}
Momma recently posted..Whitney Houston
Wow. I have actually never heard of that, will do some reading. I will be sending some virtual hugs your way. I’ve been reading your blog and you are a wonderful mom!
BarefootMedStudent recently posted..The Anti-Valentine #4
Thank you so much!
Thinking of you lots, Jess. And hoping that whatever comes of the testing, the answers give you peace and a clear, actionable path forward.
Love and light to you and your girl.
Ryan recently posted..Pinning Fail
Twitter: thewovenmoments
Oh Jessica I am so sorry you are going through this. I know answers are what we want, but they are not always easy. My heart is with you and your family. My niece London has mitochondrial disease and her family struggled for the first 2 years to figure out what she had. I would be happy to talk to you more or connect you with my cousin.
xo
Brittany {Mommy Words} recently posted..Encouraging a Young Artist: Sophia’s Starry Night
Twitter: BrittanyVandy
Sending love, so much of it, for you and your little girl.
Angie @ The Little Mumma recently posted..Beautiful Bias