Wednesday, December 19, 2012

A special needs marriage.

 This is personal, but I wanted to share it. I want the reality of what our life is like to be portrayed as accurately as that down the road we may see how truly far we've come. It is also my hope that someone else reads this and says,"Oh, I thought it was just us!"

You aren't alone. I also want everyone to understand that this doesn't mean our marriage is falling apart. We love each other very very much - as I'm sure many of you can tell from our love story I've posted here. We are committed to one another and there's zero chance either of us would ever walk away. My husband wrote so beautifully last night about how we are both feeling. Attention-starved. Beat down. Tired. Tired in a way that makes even kissing your best friend in the world seem like too much work.

It is the nature of our situation. The kids go to bed and I stay up until midnight or later nearly every night just to keep our responsibilities from swallowing us whole. 3 or 4 hours a night doing all the things normal families can take care of during the day. I was a mom of two typical babies before Addison & Audrina came along, so I know what that was like. The girls went to bed and we watched movies, talked about our day,  and snuggled up on the couch with a glass of wine. We had regular date nights. I had favorite shows like Desperate Housewives. I haven't watched a single episode since the day Addison was born. Adam worked out everyday because that's something that is important to him. I don't understand when our life became unmanageable for two people. And I am not the only one. There are families all over the country living like this every day too. Moms with 24 hour workdays. Everyday... 365 days a year. I was all gung-ho at first, all 'we can do this!' with all the passion of someone going into battle. But then the war waged on and on...and on. We lost important  battles. Each one took a little more from us. Here we are 2 years later, a ghost of our former selves. Surviving. That's about it. Happiness is relative. Short-lived. Its found in our pride when Audrina learns something new. In the funny things Addison says. In hugs from our sweet Lily. In Brooklyn's incredible compassion. In outpouring of kindness from complete strangers. But true happiness and fulfillment evades us at the moment. Because we've learned painfully that tomorrow will be the exact same as today. With new struggles. With added stress. With just enough strength to hold on for another day. But not enough to make progress.

Marriage takes time, patience, and energy invested, something neither of us have extra of right now. Its all we can do to go to work, keep the house under control, the bills paid, and the kids alive.We used to talk frequently about our dreams for when the girls 'got better'. The vacations we would take. The things we would do together... A bucket list of stuff we couldn't wait to do - just the two of us. Those conversations have all but stopped, because we've learned there is no end in sight. 

I want to believe God knows many marriages could not handle the intense struggles we have been through in just 2.5 years.  Maybe we should consider ourselves blessed with these obstacles. Perhaps we used to. I know someday we will know and understand. But it is so incredibly painful to try and understand why we aren't deserving of even a few hours in the evening together. Why is that too much to ask? How do we ever get back there when things only get harder everyday?

I love Adam more than life itself. He is my soulmate, my best friend, my love and the only reason I am strong enough to face the mountains that lie ahead. I hate that I can't make all our dreams come true. I hate that I feel so helpless and barely able to function myself, let alone invest any of my strength or energy to helping him. I know he feels the same. If a day comes when life hands us an opportunity to spend even a moment just the two of us, without the weight of our world on our shoulder.... it will be treasured. Know that. <3 I miss you too.

"I miss you Kim. I miss us. I miss spending time with you, even if it was just after the girls were all in bed. I'm tired of being tired all the time and I am so sick of being stressed out even though God knows we have every right to be. Every conversation we have is either about something important, something we have to do, or about bills, or the kids and their disease. It doesn't feel like we even know each other anymore.

I have never stopped loving you during the last 2 crazy years but this entire thing has taken such an extreme toll on me - on us. I'm whipped. I am cashed out. I wanna throw in the towel. Every single day it seems like we are presented with new and more difficult challenges like this is some stupid video game that gets harder as you survive to the next level. I just feel like we always had each other and our love to distract us and now we don't even have that.

We used to be each others escape from all of this. Now we barely have time to talk and when we do, I dont even know what we are saying half the time. I don't know how to fix it and but I'm sad and feel lonely in all of this.

It hasn't once felt like Christmas at home. I'm not that excited about it whatsoever. I don't know what to do. I am numb to everything anymore - nothing shocks, surprises or upsets me anymore because I feel like we've been through it all. I'm just waiting for the next obstacle. Trying to figure out who it affects and how we're going to put a bandaid on it for now so we dont let the damn wheels fall off this thing like they should have done a hundred times by now.

Our whole life is one long slow-moving train wreck. We used to be best friends. I am so exhausted and I'm not even sure I wanna take time to figure out how to deal with it because I keep telling myself someday we will have time to get all that back. But I don't know anymore if we will. And I don't know if it will be that easy after all this time. "


  1. I can completely relate. Thank you for sharing!

  2. Thank you for sharing

  3. My husband and I have twin two year olds who are severely impaired. We are whupped all of the time. So I relate. The love is still there but most of it is going to the kids. I feel like our relationship is still very real but much of it is on hold.

  4. My husband and I have twin two year olds who are severely impaired. We are whupped all of the time. So I relate. The love is still there but most of it is going to the kids. I feel like our relationship is still very real but much of it is on hold.

  5. My husband and I have twin two year olds who are severely impaired. We are whupped all of the time. So I relate. The love is still there but most of it is going to the kids. I feel like our relationship is still very real but much of it is on hold.

  6. I can totally relate. We have two boys with special needs - 5 and 3 years old. It just takes so much out of us both. Thank you for letting other know that they are not alone. Wishing better times ahead for you.

  7. I feel for you both. I have a 7 year old son who is severely disabled. I have spent all my time and energy trying to figure him out: treatment, diagnosis, therapies and school. I have two other children as well. I am a military wife and so I am home alone a lot. My husband and I have struggled since our son's birth. He had an affair - he couldn't deal with the difficulties and wanted sonething easier. We were both so tired of everything. And like your husband said, just too tired to figure things out. We are still together, getting a lot of counselling. He couldn't cope with me and how our family had been effected and I was depressed and just so sad. I feel for you, it's a horrible place to be. At the beginning of our marriage we talk about our dreams and our hopes, how many children we want. No one is ever prepared for how they will cope with a medically fragile child or a disabled child - there is no manual for it. My husband and I lost each other and we are finding our way back after many years of what seems like stagnation. If we can do it, you can too. Good luck and thanks for sharing your story.

  8. I completely relate to this. Word for word. Our daughter with special needs will be 3 years old in February and it has been the hardest three years of our life. We added another child in June of this year and she is doing well but it is often an added stress. Our oldest has a severe disorder with so many issues stacked up against her, the least of which is a limited life span. Thank you for putting into words how my husband and I are feeling. God bless you and your family as you tackle each new day.

  9. That sounds like my family! Thanks for sharing! If and when i get my daughters to bed and one that has dravet syndrome has a sleeping disorder. I have to clean and get stuff ready for next day and start over. It is very exhausting 24 /7 with a child with needs. you are not alone and it was nice to read your story.Thats exactly how we feel all the time. WE are so blessed to have her though!

  10. God never burdens a soul more than what it can bear. Praying that things get easier for u guys.

  11. Wow, I am so ever grateful for your words. Please know your not alone and the numbness and tiredness seems never ending most days. I pray for strength most days. You are beautiful people, hold on to each other. There may be days when all you can do is make eye contact, not even words. It's ok, your journey is different so your marriage is different. It does not mean there isn't love, it just means its different.

  12. Amy Jagodzinski (Facebook follower)January 6, 2013 at 6:11 PM

    My daughter was called "medically fragile" and we were blessed to have her for 18 years. She was never diagnosed her entire lifetime. We had 3 other children at the time, and yes, life was difficult. Yes, our marriage was stressed and tested and somehow we survived it all. We came out the other end of the tunnel with renewed love for each other and for our family. If I had to do it all over again, yes I would. I miss her more than words. Even the most difficult journey is a journey worth taking. I see that you understand this. Not everyone does. My prayers are with your family.