not all fun and games around here

DISCLAIMER: Ok, if you know me in real life, do not freak out after reading this post. I know we have some new readers, which is great – welcome! – but if you’re gonna read this on a regular basis, you are not allowed to freak out when I write about being miserable. This blog is one of the main ways I have to let off steam, and I try my best to brutally honest with myself about how I’m feeling. These words are not anything anyone needs to take action on, okay? And if you’d rather just have the updates, I would only read when Mike is posting if I were you. AND…I am weary of the whole Y and O thing – it makes it confusing to those who know us in real life. From now on, O is Noah and Y is Sawyer. I hope this doesn’t confuse anyone who only knows them as O and Y 🙂 .

So since Emmett’s been home (Tuesday afternoon), he’s been, umm, shall we call it ‘challenging’?

He does seem to have a bit more energy – this is currently being devoted to crying for long periods.

He is not eating or drinking any better – I didn’t expect this, but I think Mike is a little disappointed.

He has decided that nighttime is not for sleeping – it is for crying. Acutally the nighttime thing has been going on since at least the beginning of December. Somehow there always seems to be a reason why he wouldn’t be sleeping well – he’s got a cold, he’s running a fever, he’s got diarrhea, now maybe he’s just confused from the hospital? Except that before the surgery, he would sleep REALLY late in the morning to make up for being awake so much at night. Now? Now we’re lucky if we can even get him to take a nap if he’s not in the car.

The problem with this situation is that Mike and I are TIRED. We are tired of not sleeping well or at all at night. We are tired of listening to him cry ALL THE TIME. We are tired of so much. And as far as we know, I’m still growing a baby in this belly, so this also contributes to the tiredness.

***I wish I could do a sound blog to prove my point, because Emmett is currently in my lap, screaming his head off.***

So bless his heart, but we’re just getting used to drowning him out. We can now fall asleep with him crying – we don’t sleep well, but its something. And I feel really really bad for not just holding him all night long, but we have to sleep sometime. And like I said, he doesn’t make up for lost sleep during the day, plus I’ve got the other two to take care of. So naps are pretty much out.

All of this just stress and tiredness culminated in me bursting into tears at the pediatrician. We were talking about what the genetics team in London want him tested for (in addition to the microassay that is already being done), and all of it is bad. Really bad syndromes with no happy endings. And about how the medical command and tricare here are just watiting with baited breath to his word to send us back to America because they want us gone. And how our assignments choices will be limited in the future (although frankly, this is not always a bad thing at all). And I just lost it. I think I cried in front of him for at least 45 minutes. How pathetic is that? And he was so great, he just sat there with me and offerred up his own experiences, both as a pediatrician and a father of an adoted child, experiences that showed how with the right environment, the right specialists, the right therapy, and lots and lots of love, kids who have huge problems can make real progress – they can learn to sit, to crawl, to walk, to talk  -all things I fear Emmett may never do.

My biggest fear is what if we don’t have all that love to give him? And by love I mean patience and energy and time (some of the main ways we express our love)- things that are in short supply around here.

What if it is always like this? What if he spends the majority of even just the next year crying? I know myself – I won’t hit him, or shake him, or anything like that. But I will stick him in his crib and walk away. Which is what you’re supposed to do when you can’t take the crying anymore right? But that’s not supposed to be a way of life.

Oh, and one of the more frustrating aspects of this is that if he’s out in a large group of people, Emmett is an ANGEL. He loves to people watch. But if we’re out in a group of people, Sawyer is not happy. In fact, Sawyer would be happy to only be around our family all of the time. And if we’re out and about, Emmett’s not practicing rolling over or tummy time or anything like that. And also people don’t understand when I tell them about the crying – after all, he’s smiling at them.

But the only smile I’ve gotten lately is the big one he gave me when I was bawling my eyes out at the doctor. Do you think he mocking me? It didn’t seem like a ‘chin up, mama, we can do this TOGETHER!’ kind of smile.

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15 Comments

Filed under health issues

15 responses to “not all fun and games around here

  1. Jennifer

    Oh, sweetie. I’m so sorry that he’s still crying so much. I can’t even imagine how stressful that must be to listen to all the time.

    I wonder what it is about being out and about that makes him happy? It seems strange that he’d cry and cry and cry just because there’s not a lot of people to look at, kwim? What a mess.

    You know you can call me whenever you need someone to listen. I know you’re overwhelmed with no end in sight. Hang in there.

  2. Beth

    I’m not sure how the place was where you got him from, but I’m assuming it was loud and chaotic….maybe that’s what’s he’s used to….loud noises or bright lights….something like that? If you could figure out what it was, maybe you could replicate it.

    I totally empathize with you…on such a small level: our nights are filled with at least two hours of Griffin crying. We’re trying to get him to sleep through the night, and he consistently wakes up at 10:30pm and 3am. Last night he woke up at 10:30 and didn’t go back down till midnight. Just that amount of crying makes me crazy…I mean ranting, raving, stressed out crazy. I can’t imagine if he cried all the time.

    Do any of the doctors have an explanation for this? Surely there’s got to be something….

    Hang in there. Call me, please!

  3. A lurker here sending you big {{HUGS}} and lots of love, patience, strength and courage! What you’ve been through would have broken a lesser person . . . you (and your husband)are INCREDIBLE! Wish I could do more than just throw words of encouragment and support at you, but you’re in my prayers EVERY day, too!!

  4. I am also sending lots of prayers and hugs your way. Glad you have a place to vent. Also glad you have a supportive ped. Emmett WILL make progress! I am praying for all of the things you mentioned and more for him! Your feelings are totally understandable right now though–lack of sleep and constant crying really wears you down.

    I was just thinking–if you are going to be in FL anytime, you really should make an appt. with the geneticist in Jax. He is wonderful, and very positive and encouraging and skilled and is now booking 4 months out. You might like to get his opinion if you are anywhere in the vicinity!

    I do know what you mean about the limited assignment choices…my husband really really really wants to go to Asia…and we can’t b/c of schools for L. It sucks to have your choices constrained.

    For now I will just focus on praying that he will stop crying and sleep.

    Also, you might check out teamalexander.blogspot–she has a few posts up that you might like to read.

  5. in case you don’t make it to teamalexander I stole this, I am sure she wouldn’t mind, it was a comment she received, I changed the name to Emmett:

    “I am very familiar with the road that you are on because I have been there. I want to share with you some things that God has taught me on this journey.

    1. Emmett was fearfully and wonderfully made. He is no accident or mistake.

    2. God has a purpose for Emmett’s life, it doesn’t matter the disability

    3. God began the work in Emmett and He will finish that work. That means that you may see that completed work in Emmett here on earth otherwise you will see it completed in heaven.

    4. There is a reason that God chose you over all the other people in the world to be blessed with Emmett. There is something that God has gifted you with that Emmett needs. You are the perfect parents for him. It was no accident. Always remember that when the doubts come.

    There will be days that you just want to crawl back in bed and cry. But I think that is true for any journey God puts you on. Some days you just realize your weakness more than others.”

  6. Me again, last time I promise! I am sending you to my friend Gini this time (she commented here once before):
    http://caringbridge.org/johnlawsonflorer if that link doesn’t work just go to caringbridge.org and enter johnlawsonflorer

    It is worth reading!

  7. I seem to talk about this all the time (do I? I don’t know? But to me it seems I do). My first one didn’t have all the medical issues Emmett has, but she enver slept and she cried ALL THE TIME but nobody believed me becuause if we were out somewhere else, preferably with a lot of people/commotion, she was an absolute angel. I actually went back to work for a bit because I had to get away from the crying. My mother kept her for me while I was at work, and my mother was constantly taking her shopping because it was the only thing that kept her from screaming. Well, that and the Teletubbies. *Shudder* Anyway, my point is this: she outgrew it. She has always needed a lot of stimulation (probably why she reads and talks all the time now), but she stopped the screaming. She started sleeping. She was two before the sleep kicked in, but the screaming gradually declined and she was pretty tolerable by 18 months. I realize Emmett has extra things going on that may be the cause, but maybe he is just a kiddo that needs a lot of extra stimultion — new sights, new sounds, new smells. I realize that is not helpful when you’ve got another who doesn’t do well in the crowds. So I guess the point of this rambling comment is that, as much as it sucks, as hard as it is, maybe, hopefully, he just needs time for the screaming and non-sleeping issues. Either way, I understand how completely draining it is, how totally life-sucking it is, and I can’t imagine how you’re doing it with two other kids and being pregnant and dealing with his other medical issues on top of it all. You are Super Woman! Even though you may not feel like it, you are.

  8. Oh, boy…yes, perhaps he was mocking you (that line made me laugh, so you’ve still got it in the midst of the pain!). The bright side to this (which is, I get it, TOTALLY overwhelmed by the vast downside) may be that fighting spirit which will serve him well later in life.

    You haven’t written about it and I assume you’ve tried, but…TV? Baby Einstein DVDs? Maybe that will suffice for stimulation.

  9. My baby smiled at me while I was bawling last night. (For much smaller reasons. I am a weakling.) AND IT WAS IRRITATING! I mean, I smiled back, because my heart is not made of stone, but STILL. Can’t she see I’m wallowing?!

    I love your disclaimer at the top. I feel like I should have my own version.

    Praying for you and your boys.

  10. Oh girl, do not feel guilty for one second for walking away. There is no guilt in staying sane so you have patience later too!

    Like Elaine, I had a cryer too and although he was also without medical challenges, he cried and cried and cried. I read something at that time that, I swear, savd my life. Or maybe my child’s life. I don’t know if it will speak to you like it did me but I thought I would share anyway.

    “Realize it’s not your fault. Oftentimes the cause of your baby’s cries cannot be found. You need not feel that it’s your fault if your baby cries a lot, nor is it your job to make your baby stop crying. Cries not only pierce tender hearts; they may also push anger buttons. If baby’s escalating cries are getting to you, hand baby over to another person or put baby safely down and walk out of the room until your scary feelings subside. Don’t take your baby’s cries personally. Your job is to create a supportive environment that lessens your baby’s need to cry, to offer a set of caring and relaxing arms so that your baby does not need to cry alone, and to do as much detective work as you can to figure out why your baby is crying and how you can help. The rest is up to your baby.”

    I think, for me, realizing that it was not my job to make it stop REALLY helped. It allowed me to just BE there and to hold him through it and disassociate from it, reminding myself that it was not my fault OR within my control. I don’t know why but I guess I had been putting so much pressure on myself to *make it stop* and I needed permission to let go of that pressure.

    Also, like Elaine (we must have had the same baby), I spent TONS of time at the dumb mall walking and walking because it kept my kid from crying all day. But he was my only and I can’t imagine trying to balance the conflicting needs. Finally we actually did use the car for naps for Noah’s entire first 2 years. Yeah, great for the environment, but we were super-desperate!

    You are a wonderful mother for Emmett, a wonderful family for him, and you will find your way through together.

  11. Hey! I second Melissa on the TV thing. I remember babysitting a kid that couldn’t possibly have been 2 years old and had a TV in his room. Maybe he needs to watch some action movies! 🙂 OR, on the plane overseas, the flight attendant suggested that if Mally was crying they would give her a little Bourbon. Hmm…maybe this is a solution that could work for you! ;0

  12. I just want to chime in with the others and say that I never would have guessed what nonstop crying can do to your sanity until we were in Vietnam adopting Annie. She cried for the entire two weeks that we were there. I honestly felt like I was standing outside of my body at one point looking in and thinking, that sucks for them, I think I will get out of this small hotel room. Sounds crazy, I realize that now, but the crying does crazy things to you. Add the issues that come with attachment for both the parent and the child, and it makes it that much worse. She would cry ALL night long. My husband and I got two to three hours of sleep a night the entire trip (and three hours was an awesome night). Don’t feel bad at all for the feelings you are having. Anyone would feel the same way. You guys have all been through a lot. I pray for Emmett and your family a lot. I really hope things turn around soon. I thank God every night for Annie not crying like that anymore. She still doesn’t sleep, but she is not screaming now.

  13. Charity

    We will keep praying for all of you. Your patience is AMAZING!!!! Maybe there are loud CD’s you can play. The TV thing is a great idea. There are loads of annoying, stimulating kid shows out there :). Or if you need a lot of stimulation, bring him over here! We are full of stimulation over here ;). Or if you need a shoulder to lean on or someone to keep you company on a BX shelf check, give me a call!!! I am so glad that you have this blog to vent with, that has got to help.

  14. Missy Poole

    Wow Lauren…by now, any other person would have dropped the baby off on a corner and crawled into a hole. At least, I know myself, and my patience would have worn TOO thin by now. You are AMAZING. I think it is completely wonderful how much strength you pull from your family and from God. Perhaps thise are the only 2 things that will get you through. I can’t imagine this – Gavin wakes up a couple times in the night and I am irritable. I read a previous post where someone stated that Emmett came to you for a reason and there is a plan for him, and for you. I truly believe that you and Mike are the only parents this little boy was meant to have. You are handling this with the utmost grace and compassion. I really hope things get better for you – I will continue to ask God to give you hope and guidance. He knows that you need him more than anything right now – he is listening. Hang in there and PLEASE, let me know if I can be of any help. I can cook you guys a meal or something. I know that you probably won’t ask for help – most people don’t b/c they feel as thought they are bothersome. Well, YOU’RE NOT!! So, just e-mail me your phone number and address (+ post code please :o)) and I can drop you a meal or anything else you need. If you just do that, it won’t feel like you are asking for anything. ;o)
    Much love and many prayers,
    Missy

  15. jessica

    Any chance you could get some more help in the household? I know you have family… but Im wondering if an au pair or babysitter or mothers helper might give you the relief you need. My friends went through a tough situation when they had autistic triplets (yes, triplets!) and became pregnant. They got a fantastic au pair which made this time not only doable, but also rewarding. They got enough relief to be able to celebrate their children’s small steps of progress, take joy when bonds developed, and enjoy their new baby’s beginning in life. The au pair got an experience of a lifetime and is now a child therapist herself.
    Just an idea- we all have our limits!

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