As I drove up the W Road, I could see the greenery, the morning light. I could see the water trickle down each waterfall, feel the gas under my foot, but there was no noise. Even my thoughts, just pictures. Pictures of the last year, seeing my baby Doll for the first time, seeing Adam's face go from fear to total loss of control... seeing him, knowing he couldn't do anything, watching him cry helplessly. Pictures of the NICU, and then of every time I've handed my Doll over to someone and her look of confusion... my feeling of absolute fury that I couldn't explain it. Pictures of every time I've laid her down on an exam bed, watched her scream, feeling the urgency to snatch her up, nurse her and run. Pictures from my memories of stealing her and just running.
Where in the hell have I been this last year?
As I drove up the mountain, <<< BAMMMM>>> the sound popped on LOUDLY all at once. I heard my kids screaming in the car, Kids Place Live... I cried. CRIED. My sweet baby turned one and instead of planning a party, I remembered the horror of her first year. Dude.
DUDE.. I WAS strong! Brave AS HELL.
That was terrifying and suddenly I could see why people gave me the looks, said the things they said.
It's what you do. When hard is thrown at you, you don't run. You don't complain. You just do it! When something happens to your baby, you turn into a wild animal. Every single cell in your being tightens, your eyes go black, you don't see or hear anything except for your child. Hence the term "mama bear"... you will do ANYTHING to protect your cub. If you have never had strength before, suddenly you do. You have a super human grip, your faster than lightening, your senses are at their peak.. you hear every whisper they say... you see every single move... and you hold them tightly.
How counter intuitive to give your baby away when danger strikes... to someone you don't know. To look at those sweet eyes and hand them off and walk away, not actually KNOWING that they will be ok. Talk about trusting. Shew... it makes me want to barf even thinking about it.
Yeah, that was hard.
As I look at Dahlia, I know the hard isn't over with. This is going to be a lifetime of hard. It will get easier, we will all get tougher. She will be big enough to understand that it's for her best interest, she will have a hand in the decision making... Adam and I won't be the only ones calling the shots.
I want her to be HER. If she doesn't want to walk, high five baby girl... I'll get you from point A to point B however you choose. If she doesn't want a certain surgery, girl- I'll hold your hand while we process that. Dollie Mae, the world is your oyster. We will give you all of the tools, we will get you ALL of the professionals, we will surround your little being with the most loving people, we will tell your story... and you decide what to do with the rest girlfriend.
This is why I get angry about the "gadgets", the Facebook groups, the other spina bifida kids who are "exactly like Dollie!". They aren't exactly like her. They have spina bifida, yes. What level was their lesion? What type of spina bifida did they have? When was their spine closed? Where? By who? Did they have severe bilateral club foot? Have they dealt with UPJO's Bladder and Bowel nerve damage? It's ALL so different. Every child.. every case. Many people don't know all of the areas... the differences. Similar to Autism... no two autistic children have the same issues. I don't expect anyone to know this. And I love the intentional love and support, I'm just not ready to talk to someone who's situation is SO much worse... or SO much better. It's really difficult as a mom... you compare , whether you want to or not. It's human.
I don't feel that Facebook is where experts discuss clinical trials and studies, Right now gadgets aren't being recommended... and Dollie isn't showing interest in utilizing them at this point. We still go to Vanderbilt quarterly for Spina Bifida clinic, her next one is August 12. She will get a brain MRI, a renal scan, a scan of her spine. She will see cardiology, neurosurgery, urology, gastroenterology, and orthopedics. They will all evaluate her, make recommendations, schedule additional appointments and surgeries. We have PT who comes to the house to work with Dolls and exercises her, stretches her, and builds core muscles. We have Developmental therapy who works on making life for Dollie enjoyable to her. Does she want to move? Let's work with her on getting there. Is she bored in the bumbo? Let's encourage independence. And then we have Dr. Good, who is so dedicated to her care. We are constantly having conversations around how to meet Dollie's needs. Right now, those are the recommendations we're following, if that makes sense.
I have no idea what I'm doing. We have never done this. We're literally going one step at a time, one appointment at a time, one day at a time.
All that to say... what you can do! Please say a prayer for Dollie as she gears up for Spina Bifida clinic. Those days are LONG and HARD on her. Pray for her next surgery, on her feet. Pray for US navigating our ways through this. That we will make decisions that are the best for her. Please don't pity us... but encourage us! We love you all and are so thankful ( and thank you for even read this blog). <3
xoxo
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