Tutus & Cougars

July 8, 2014

My heart gets some heavy sadness every so often. The best way to describe it is to watch this short video…
That video just encapsulates what I miss, which is, the normalcy of Reagan growing up. Although, we had to keep her on a special GA-1 diet and that was out of the norm, she was meeting all her milestones. When your baby sits, crawls, stands, and is almost walking all by themselves, you don’t anticipate that being taken away. You celebrate each milestone…you usually celebrate it once. I’ve needed several pep talks this past week, from me, from Rob, from less obvious people like my dental hygienist, and then my cousins and a friend of mine since I was five years old have all given me little mini pep talks without knowing. Yes, Reagan is making wonderful strides. She’s sitting better, although we can’t leave her alone sitting. She’s babbling more, which I absolutely love and she’s trying to pull herself up to sit. She wants to pull herself up to stand so badly, but her legs aren’t working right and the connections aren’t there yet, but I believe they are forming. Two and a half months ago she couldn’t hold her her head up when we left the hospital, so she’s come a looong way in a short period. That video also shows me we have a long way to go.

The sad moments hit unexpectedly. In Target the other day, I saw a ballerina leotard and tutu. It made me sad and I had to fight back the tears, b/c I’ve dreamed of watching Reagan in a dance recital…I don’t know if that dream will ever come true. So instead of pondering that, I found a bathing suit with a tutu on it b/c it was just enough ballerina to satisfy that dream for now.


Getting ready for swim lessons, with my tutu suit.

I’m adapting my dreams. Is it weird to say that when I look at pictures or videos from before her crisis, I feel like I’m watching one of those sad drunk driving commercials where people are talking about the person they lost from a terrible accident. I feel like I’ve lost someone, even though Reagan is still here. I just wonder if that girl in the video will ever come back. And I fight with myself in that, I should be happy she wasn’t lost completely, and I am, I totally am, and I’m glad it’s not worse. So glad. I am so glad Reagan is still here with us. But I do grieve losing the little girl in that video…b/c she’s not the same girl that’s here, at least for now. It’s a new girl, I love them both, but I miss one terribly. This is why choosing joy can be hard, and also why it’s a daily decision.

Dr. Appointments
So, I went to the GI Doctor and man, those visits have been more frequent and rough. For starters, Reagan’s G-tube site is not healing exactly like they want, so it’s had to be cauterized twice. Today, they switched out the button in the office to something that might be better. The Dr. is from Hungary, I think? He is super nice but has a thick accent and asked me if I wanted a nurse to come in and help, or if I would hold Reagan. I was giving myself a pep talk in front of him, “You’re changing out the button in the office? Oh my gosh…well I think I’m going to die. No, I can do this…I’m the mom…I have to do it. I just won’t look.” He patted me on the shoulder and said, “You can do it” Like Bella Karoli.

And I did. I did it. And he chuckled and told me good job, meanwhile Reagan is screaming and I’m shaking my head and breathing like I’ve just run a mile (yeah, a mile).

Parenting is hard
I always knew parenting would be tough, but I never thought it would be like this. And I’m pretty sure this is not what people have in mind. But special needs children and adults are here…they are everywhere actually. But if that’s not the circle you run in, you likely never see it. At the GI Doctor, I saw a young mom (maybe 25) with her little three year old son in a wheelchair. It sounded like he had trouble breathing, he was looking off to the side and had hearing aides in. His mom dressed him sharp though. He had a button up vest on, need I say more? Before, I would feel uncomfortable starting a conversation (what do I say?) but today I wanted to talk.

I found out the boy’s name was Caleb and that he had contracted meningitis after he was born. Meningitis can do a bunch of terrible stuff, you can loose your hearing, your vision, have brain damage, etc. And she didn’t need to give me a list of what that meningitis did, I could see it. I asked if it was hard for him to breathe and she said this was the first year she’s started to understand that he has very bad allergies and in order to help him, she gives him breathing treatments. He also has a g-tube like Reagan, and we talked about what that was like. I told her about Reagan and how she was in the hospital and also suffered brain damage and is currently trying to relearn the skills she had.

“Oh really?!” she said. As she said that, the boy turned his head our direction…Reagan was moving and smiling and cooing at him, and he made the effort to look. I just thought, to myself, “does anyone ever try to strike up a conversation with this pair?” She was so happy to talk to me, I almost asked for her phone number to stay in touch, but I thought that might be weird so I left it as a waiting room conversation and went on. But they truly touched my heart and I’m glad I made the effort to ask his name and learn more about him. I encourage you to ask a parent of a special needs child their child’s name next time you have the chance…it will probably make them feel important and included, not just noticeably different.

“You will never be in control of your life circumstances, but you can relax and trust in My control. Instead of striving for a predictable, safe lifestyle, seek to know Me in greater depth and breadth. I long to make your life a glorious adventure, but you must stop clinging to old ways. I am always doing something new within My beloved ones. Be on the lookout for all that I have prepared for you.” – Jesus Calling App

When I think of my life in an eternal perspective, I know things are going to be OK. I know everything will work out for good. I still get sad though, b/c I’m human, and we have suffered an enormous loss. You may get tired of reading and hearing about my same struggles, {shoulder shrug} it’s real, and it’s me. I won’t give you only the good…you get the bad and ugly too with this blog. Every blog is not perfect, every emotion is not happy. But it’s real. You know what else is real? Cougars.

Life is a ZOO
We took Reagan to the zoo, I swear she’s saying Cougar in this video…but I might be biased b/c I think my daughter is incredibly smart.

Here are some Red Ruffed Lemurs

Reagan LOVED the zoo…next time we are feeding the Giraffes b/c I’m pretty sure that will get an even bigger reaction.

Today is the third month since her metabolic crisis…she’s worn a tutu, seen Cougars, Lemurs and had an all around good time since her crisis. We are getting there…getting better, fighting for our normal and choosing joy in this tutu and cougar filled world.

comments +

  1. Terry Lulofs

    July 8th, 2014 at 10:41 pm

    I think you are doing an incredible job with Raegan and your blogs are informative and help the rest of us understand just a little bit of what is involved in your new journey. Never give up and always ask for help when you get overwhelmed. I am sure that there are many of us out here willing to lend a hand, ear or whatever you might need. God Bless you all.

  2. Sharon Mikol

    July 8th, 2014 at 11:20 pm

    You and Rob are wonderful parents and it makes my heart warm to see all of the progress Reagan has made in the last three months. Reagan is strong like her mama and she looks perfect in her tutu. I love you and you are all in my prayers often. xoxo

  3. Karen

    July 9th, 2014 at 2:13 am

    She totally said cougar.

    I love you guys and deeply wish I could see you weekly and hug all of you. Praying daily for Reagan to keep growing and going full force every day.

  4. Thelma

    July 9th, 2014 at 3:06 pm

    You overwhelming me with the power of Love in your hearts for Reagan. And this kind of love can only come from God Himself.

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