On being a special needs parent…

I read THIS yesterday as parent after parent on my Facebook feed shared the article. At the time, I was scanning the web from my phone from beneath my dearest Adelaide, softly crying.

Although I’ve posted a few updates on her, it’s been a whirlwind since we’ve returned from the LPA National Conference in San Diego… we landed late Saturday night, spent the day jet lagged, but as a family, on Sunday, then had an incredibly busy Monday running from Addie’s physical therapy, the OB and chiropractor for me, and fielding calls from 4 different doctors (have I mentioned that when an actual doctor calls, it’s usually not good?). On Tuesday morning I said goodbye to Dave as he headed to work, and he kissed me extra hard. The look in his eye told me what I needed to know; it pained him that I would be going through a surgery without him and he had no words. Neither did I. He carried our still-sleeping girl to the car for me and kissed her face and head as he hesitantly closed the car door.

I didn’t even cry. After she was under sedation, I calmly left the room, my head spinning as I attempted to control my breathing. I gathered our belongings for our overnight stay and meandered around the corner to the waiting room where, after spending  a solid 15 minutes staring at the surgical board, called my mom. Then I tried on one long-sleeve shirt, but then I was wearing too much gray, so I took it off and put on the blue one- it was from the 5k I did a few weeks ago. You’re strong enough for this, Chelley. I sat down and got out my work. I use 3 different spreadsheets to track my work, sponsored posts, links, blog posts and the like. I took out a pen and started to cross things off and move things around. I planned for a few days of recovery where I could do some work, but not a lot. I took out my highlighter and crossed off everything I’d done. I felt grateful that I have the option to push work aside when I need to because Dave takes care of us.

#aisforadelaide #specialneedsparenting #motherhood #specialneeds

So back to the article. It’s a few days post-tubes (second set) and adenoidectomy and Addie was on top of me, where she’s been a lot since her surgery. Perched on my chest, or curled up around my belly inciting kicks from her baby sister, inside. She was running about 100º and shaking, her little body clad in nothing but a Bumgenius diaper, snoring and sweating through my own tank top. Every now and again, she would stir and cry in her slumber. So I read, and I softly cried, too. If you follow along with the article, I cried because:

1. Sometimes lonely doesn’t describe it. Even when I have a moment to connect with friends and family I cannot express the fear I feel. The fact that everyone in the world could be there to hold my hand, and I would still feel like I was standing alone- especially when I am there without Dave. Because when we do have time to talk, I want to talk about Addie every moment and not at all, and not knowing how to process your own emotions is a lonely place to be.

2. Dave and I are a power couple. We aren’t changing the world, but we’re shaping our own. And we have to work at it everyday. We discuss a lot of medical things, we sleep very little large chunks… but we do it all together. Sometimes we snap and bite, but the lines of communication don’t close. Sleep, fancy cars, and, yes, even intimacy can wait… but not forever. We fight for that. For this. For us.

3. Enough said. I can go mama bear in 1.4 seconds flat, however.

4. All the time. This is also due to my losing a brother, young cousin and father before I was 13. But even more so, as we look deeper into Addie’s spine and decompression and blackouts and sleep… I feel relief when she wakes up. I hate that feeling. I just want to wake up and not have my heart leap and stop until I see her ribs expand and contract with the sweet sound of her breath. I hope this fear won’t last forever.

She is #aisforadelaide #strength #courage #laughter

5. Sometimes I know that my voice means less than my body. The length of my reach engulfing her body as she cringes in pain or fear at an appointment. The way she melts into my shoulder or tucks into my chest as they try to take another set of vitals, insert an IV, measure another limb. The way she won’t wear a mask unless I gently place it over her face. There are no words… just the touch of mom. Recently I learned skin-to-skin is important past infancy, as Addie craves feeling my heart beat and holding my necklace. She reaches into my shirt just to feel my skin, and I crave comforting her. Touch is so healing and speaks louder than words. When I ask her if she’s ok and she grabs my face into her own kisses me and settles into my arms. Words seemingly, in that moment, mean nothing.

6. While Addie doesn’t have speech issues, hearing your child come out of sedation like a lion screaming for you or waking in an apnea episode startled wanting only you… those are the times I cherish her communication most.

So, in light of her adenoids being removed, which gives off the most horrible breath, and my heightened sense of smell, her small shaking body, feverish and gripping, the hours we’ve spent in the same position (painful for me)… this is just what we do. And after the hours. The physical ache and mental exhaustion… the moments left in between. There’s still a light inside.

#aisforadelaide #sarifices #parenthood #specialneedsparenting

…been laying here for hours. Wouldn’t trade a minute.

34 Comments

Filed under Achondroplasia, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

34 Responses to On being a special needs parent…

  1. Jessica Chyko

    Love and prayers to you all as you go through this tough trial. The Lord sent Addie to you, knowing that you & your husband would be the best parents for her, and you’re doing a great job. Thank you for sharing your stories with us- we can relate to many of the feelings & experiences you’ve shared. One day this time will be just a memory and you will say “Remember when..??” and wonder how you ever got through it. Best wishes!

  2. Gosh, this is a time when I wish I could just give you a great big hug. I’m a teacher and often work with special needs kids. The article you linked was so important to helping me relate. Sometimes those mamas are the hardest to work with because they’re so used to fighting for their kids; it becomes second nature. They forget that I’m on their side. Hang in there mama. You are Addie’s champion!
    Dede recently posted…Planning Your Disney Trip Makes It MORE RelaxingMy Profile

  3. Shauna

    Oh my goodness, I can’t imagine all you are going through. I like you, have lost way too many people at too young of an age and sometimes feel that it makes me more attached to life and those in it. On the flip side, sometimes I think it makes me value life so much more than those who have never known loss. I hope she heals quickly and that you get a moment to breath. Much love!

  4. Daisy

    You are such an awesome mom. I can’t believe going through so much. Hugs!

  5. You posts are always uplifting. They remind me to be grateful every day that my daughter was born completely healthy. They also show the strength that loving, committed mothers and fathers have for their children. Good luck to you and Addie!
    Courtney recently posted…Review of Disney Planes: Fire and Rescue – Now In Theaters! #FireAndRescueMy Profile

  6. I don’t have any children, so I can’t imagine the pain that comes with handling all of Addie’s medical issues. I also can’t imagine the joy you must feel when you look at her laying there on your stomach. You and your husband are the salt of the earth, and the world is better for having you both in it. Good luck to you, your husband, and Addie.
    Jennifer recently posted…Tommee Tippee Best of British GiveawayMy Profile

  7. You are a very strong woman to go through that by yourself. You are right, though, all the sacrifices we make for our children are totally worth it.
    Janel recently posted…How to Pick the Right Formula for Your BabyMy Profile

  8. Pam

    I have a child who still has special needs–she has a rare genetic illness. It is tough, but you are right you will never regret the sacrifices you make. Hugs to you as you go through this tough time.
    Pam recently posted…Why I am Loving Audio Fest at Best BuyMy Profile

  9. I am the mom of two boys, one of whom happens to have special needs. Actually I believe all children have special needs, but that’s a whole other conversation. I didn’t agree with 1 or 2.

    • I wish I didn’t feel lonely. I truly hate the feeling- but I think dwarfism is a rare disability and sometimes there just isn’t anyone to talk to, on top of still being a new-er parent. For me, it gets lonely. I hope for many it isn’t. As for marriage… like I said, Dave and I are a power couple. We get stronger each day, but with any good marriage, we also work at it. It’s important for any relationship to cultivate it.
      martinkadelux recently posted…On being a special needs parent…My Profile

  10. Robin (Masshole Mommy)

    Someday she is going to read this and cry, like I did. You are an amazing mom and Dave is an equally awesome dad. I always say that god gives us what we can handle, so he thought you two were right for the job :)

  11. Matthew's Mom

    You are such a Super Mom! It’s so hard being a parent and you are amazing. We have had challenges with our son and there have been ups and downs.

  12. following your updates all week has been so up and down. I truly hope she is feeling better now! XO
    candice recently posted…Shh…I’m Letting You in on a Light Bladder Leakage Tip!My Profile

  13. Sounds tough but it’s great that you and your husband are there tag teaming and support each other. Moms are super moms!

  14. You are so strong. I don’t know if I could do it.
    April recently posted…Escape Miami Style LoungeMy Profile

  15. I hope she is recovering well from her surgery and is on the mend. You both are strong!
    tammileetips recently posted…Mt. Rainier National ParkMy Profile

  16. AWW lots of Hugs and prayers for you guys… you are such an awesome mom, strong and not sure if I could do that… Sending more prayers and I’m sure all will work out
    CrazyMom a/k/a Melanie recently posted…Visiting the tallest mountain in #Germany “Die Zugspitze” #TravelMy Profile

  17. Wow. I hope you get your time where you are not waking in fear. your words have left me speechless.
    Debi recently posted…De-Clutter Your HomeMy Profile

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