There have been…

There have been more than a few bad days lately. Poppy is no longer ill, and her bee sting healed very quickly – but now that we are back to our normal daily routine, she is fighting certain unavoidable tasks. Like, being a passenger in the car. She screams. She does not fuss, whine, peacefully protest – no. She screams until she is hyperventilating and choking. What this does to me is the most troubling. 45 minutes of her crying this way sends my blood pressure up, makes my head pound, and absolutely BREAKS MY HEART.

It is not as bad as the incessant wailing of her first 5 months, which I survived ONLY by the skin of my teeth and grace of God, but it is bad, bad, bad. It is even worse when I haven’t had a decent amount of sleep. I use “decent” loosely as I may consider three full (non-consecutive) hours as decent these days. It just gets into me, the crying. It weakens my defenses and the looming cloud of depression/exhaustion/fear/doubt settles upon my chest.

And then the car ride is over and she smiles and I feel human again. Just like that.

 

Upcoming surgery: I’ll just dive in. 

I don’t want Poppy to spend the better part of a year, which at this point is more than her entire life, undergoing and healing from two surgeries that she does not need to survive. Casts for almost a month, bandages, skin grafts, PAIN, scabbing, scarring, crying, MORE sleepless nights. . . 

I also cannot fathom Poppy spending the rest of her life hurting because she is different in ways that could have been “fixed.” 

I have two appointments scheduled with two different surgeons. I am trying to find out if her insurance will cover flying to Texas to be treated by THE doctor with THE lead surgeons at a renowned craniofacial center. If she can be seen in Texas it will be a scramble to come up with the funds for travel and housing while there. I can’t say the idea of flying to an unfamiliar place for surgery is appealing – in fact, it is terrifying. But what option do I have if they are the best. 

I have been spending a lot of time doing projects that soak up my time. Painting. Sanding. Moving furniture. I look forward to the day when I am strong enough to just lay on the floor and play all day. I can’t now. If I stop too long – I think. Thinking leads to sweating and anxiety. Anxiety leads to mental paralysis. 

She wants to crawl. I won’t let her. I’ve missed so much already… while always right here. I am so tired of this fear.

I had a wonderful woman come and do postpartum henna and photography. She was phenomenal. So much talent in one person. Kieran and I both got one hand/wrist done. I believe it made him feel very special, and that, of course, makes me quite glad. In some cultures a woman who has postpartum henna is to relax and be waited on and treated gently and forbidden to do any housework or labor of any kind as long as the henna lasts. 

I said “some cultures.” 

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5 thoughts on “There have been…

  1. I’m so sorry that both you and her have to go through this! She’s beautiful surgery or not she’s beautiful and perfect!! There’s no way around that at all!! I know how unbearable these days feel, I know the feeling of wondering how you will handle the next. The constant worry of what’s going to come next and when. The screaming. It SUCKS! It’s something NO mother should ever have to endure, but I can promise you this when the major obstacles are out of the way you will look back on this time and you wont remember the moments where you just wanted to curl up in a ball and cry all day. you wont remember the screams (well you’ll remember them they just wont be the main things that stick out in your mind) you’ll remember the smiles, the firsts, the snuggles etc. I can’t promise the feelings go away to be honest they don’t every time a new surgery is mentioned a new specialist they all come rushing back like a freight train ready to take you out and knock you down again. But then she will smile or hug you and she will bring you back up. Find strength in hers! Find the will to keep going in her power to fight through it all! I can relate to so much of your feelings except the keeping busy instead of keeping busy I felt myself consumed by the need to be with him touching him at all times of every day. sleeping or not I was holding him on the floor with him etc. many tasks were left undone because I just KNEW the second I didn’t touch him the second he was out of my sight something would happen and he’d be taken from me I couldn’t bare the thought. Dakota’s statistics are 50% of kids with his syndrome die before the age of two. I let myself get over powered by those numbers fearing how many days, min, weeks, years I would have this perfect little boy in my arms. It controlled me!! Right now we’re at a “safe point” everything is going good he’s healthy and happy. I still find myself wondering at times what comes next what road block will be thrown when. But I am at a point now where i know we can take out any road block that comes our way! It took me a long time to get here and it’s not easy. but you will get here to!! I remember spending hours on end leaning over the bath tub just pouring cups of water over Dakota’s belly all day and ungodly hours of the night because that’s the only thing that soothed him. There were times I honestly didn’t know how much more I could handle and wondered why god gave me of all people someone that needed so much when there were people out there who could give him so much more. I’ve come to the conclusion that god gave him to me to teach me that I am enough for him. I can’t give him all the possessions in the world I can’t give him all the physical things life has to offer, but I can be there. I can help him get through while he helps me get through and teaches me a level of love and strength I never knew existed. If Texas is where she needs to be pray and pray hard god will help make it happen check into the Ronald mcdonald house they will provide the housing, check into the morgan project and other foundations that do scholarships to help in these situations. I have a list of lots of them I’d be more then happy to get you as well as help find more for you! If this is what she needs it WILL happen and i will help in EVERY way I can!! I promise these days will be a memory I know it’s hard to believe right now but they will be!! Her smiles will be what holds you together always! and your smiles and hugs will be what holds her together!! If you need anything let me know!! (sorry for the book I just wanted to let you know you’re not alone and it gets better!)

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  2. call me any time! I know our situations aren’t exactly the same but emotions and the fear is the same I’m always willing to be a shoulder if you need one any time! and remember it does get better!!

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  3. Spence hates to travel to… Though he has improved…a small amount… And like poppy when he gets out of the car he smiles…. You will get through this… I have faith in you, poppy and yr handsome son… Who seems to take everything in his stride, what a great male figure for popstar… Thinking of you mate… It’s all going to be ok… Xxx

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  4. Freaking awesome! I want to do this! You all look beautiful. The picture with the 3 of you – standing almost as sweet as the one nursing that cute little naked baby!!

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