I’ve been wanting to write this post for over a week now, but any time I’ve had any time to sit and do it, exhaustion wins and I’ve done, well, nothing.

I’m really struggling right now, both physically and emotionally.

Right now I’m sitting in my room listening to Grayson scream his head off in his crib. He’s so tired and desperately needs a nap, but he refuses to lay down and go to sleep. These days, Grayson is a really difficult child. Sleep has been awful. He barely takes naps, and is taking over an hour to fall asleep at night. He wakes up multiple times a night crying. And during the day he cries/whines/fusses off and on It’s really frustrating- on him and me. Most of the time it’s because he’s either tired (because he won’t sleep) or he’s frustrated with the lack of cooperation of his body. I’ve said before- he desperately wants to crawl and he’s so close- but his front just won’t coordinate with the back. So he cries. And I can’t say I blame him, because I would be mad too, but sheesh, listening to it all day gets really old, fast.

Medically, he’s doing pretty well. He hasn’t had any seizures (that I’ve witnessed) in weeks, and he hasn’t been sick. He still throws up relatively frequently, but it’s better than before. I wish we could push his bolus feeds to a higher rate so he could be off the pump more during the day, but I’m grateful that at least he’s not on it 22 hours/day anymore, and he’s still gaining weight. We are STILL waiting on his genetic testing- the supposed 15 week turnaround was up June 23, so it’s been more like 19 weeks now. That’s a long time to wait for results from one vial of blood. I talked to someone Friday who said the testing is actually complete, they are just waiting to sign off on it and release it to our doctors- whatever that means. She said it should be early this week. We’ll see.

I think all this would be easier to handle and more tolerable if I felt better and had more energy. But I feel awful most of the time and have zero energy. When I’m not eating or just ate, I feel either famished or nauseus. I’m still throwing up regularly, and like I said, have no energy to do anything. I have so many things I would love to do, but I’m just so tired.

This pregnancy has been hard. First of all, it was totally unexpected, which has been a challenge to come to terms with. I felt like prior to this summer, we were finally in a place of acceptance and being comfortable with the unexpectedness of having a child with special needs. While Grayson is a lot of work and our path looks different than most, I was in a good place. I had support, knowledge and a plan going forward. The genetic test we are waiting on was supposed to be a big answer as to whether we should even have any more kids. Now, well, we are having another kid not knowing much about our chances of Mito recurring in our family. It’s scary.

With Grayson being so difficult at the moment, I question a lot how this whole thing is going to happen in February. And I know it will, because we don’t have a choice. We will make it work- I just wish I knew exactly how so I didn’t have to worry about it. I’m upset that this pregnancy has already taken so much time and energy away from Grayson, and I worry how much more time a new baby will take away from him. I’ve heard from so many people what a gift a sibling will be for him, and how he/she will probably motivate him in his progress, but I know it’s still going to be hard at first. Really hard.

All that being said, I am excited about this baby. Although I am definitely NOT ready for the arrival yet, I know that meeting him/her for the first time will be amazing and he/she will be the perfect addition to our family. I told my mom I feel horrible for having some negative emotions about such a blessing, but she said just because something is a blessing doesn’t mean it isn’t hard.

In a few weeks, Grayson starts school and we will have to be in more of a routine than we have this summer. It will be a very good thing. I know hard times like this don’t last forever, and things will get better. There are so many good things to look forward to- I’m just trying to push through and survive this season.


  1. Jillian Moller on July 29, 2012 at 4:45 pm

    Awe, momma – big hugs. What you are going through is very normal for a mommy-2-be for number 2. I have seen many friends struggle with this. What I always say is to keep this perspective – Grayson is your only child who will ever get you to himself. Everything other child has to share you from day 1. Think how blessed Grayson is that for 2 and a half years he has you all to himself!And your mom is right – what is that Laura Story song? Blessings, right? Some f our biggest blessings come through are toughest trials.Praying for you always. And hoping you start to feel better soon.

  2. Jillian Moller on July 29, 2012 at 4:45 pm

    Sorry for all of the typos – one of those morning around here too:-)

  3. Diane on July 29, 2012 at 4:47 pm

    Oh Elizabeth, your description of Grayson's whining and not sleeping took me back to when Abby was little.. She did not sleep through the night until she was over 4 and rarely then(she co-slept for years more to keep me from getting up every 30 minutes).. Her nickname was "crabby abby" for the first few years.. she would not let anyone but me hold her.. not even her Daddy- those were the toughest years , I was so deprived of sleep.. I was stuck 24/7 with a cranky baby,toddler preschooler.. but it seemed like overnight she turned into a much easier child. Despite the rough health she has been an extraordinarily easy teenager. I cannot imagine Abby being my first and being pregnant – Our oldest was pretty easy with just asthma to contend with.. we were on our own in the Military and I still wonder how we all survived that stage! 🙂 Hope the morning sickness settles quickly and Grayson moves toward a more peaceful milestone that includes a good night sleep!

  4. andmom on July 29, 2012 at 4:49 pm

    I'm sorry you're struggling.Grayson will develop and grow and get into a new phase soon. All children go through incredibly frustrating times, and all we can do is just get through, and you will.Pregnancy is hard when you already have kids to take care of, harder still because of all his needs. It's ok to admit it. But in the end, you will have another baby that you love with all your heart and won't be able to imagine life without. You will figure out how to handle it because, like you said, it has to be done. And then people will look at you in awe as you disconnect Grayson's feed with one hand and comfort the baby with the other, all while still eating your own lunch.

  5. Erin on July 29, 2012 at 6:29 pm

    So sorry for this rough patch, feeling so horrible for so many months takes a lot out of you. 🙁 You have to be close to the feeling better phase…hope it arrives sooner then later. And so sorry for the lack of sleep all around, poor G and poor you….lack of sleep and feeling poor are a recipe for long painful days. Thinking about you. xoxo-

  6. Esperanza on July 29, 2012 at 7:28 pm

    Wow, that all sounds REALLY difficult. I can't imagine dealing with a struggling child (Isa is being SO DIFFICULT right now, so I know a bit about what it's like) and a the first trimester sickness and exhaustion. That just sounds impossible. I think it's completely reasonable for you to work through any and all feelings you have about this pregnancy, because as your mother so wisely said (and I love this) "just because something is a blessing doesn't mean it isn't hard."

  7. Lee, Michelle, Cooper 4 and Allie 3 on July 29, 2012 at 9:00 pm

    I need a list of what I can do for you this week. Do you have a pooper scooper service lined up … If not I'm showing up with my shovel ….It doesn't gross me out at all 🙂

  8. SRB on July 30, 2012 at 1:48 am

    I can relate in some small way to the demands of a toddler coupled with the demands on your body those first few months. I can also relate to the surprise of it all, and struggling with how to cope day to day, despite our situation being very different. I feel for you, and with you there! I hope it gets a little easier for you, day by day and you start to feel a little better soon. 🙂

  9. basebell6 on July 30, 2012 at 1:57 am

    sending my hugs to you! there are some days [ok most days] when i'm convinced my child does more screaming than any other child in the world. one day last week blaine screamed / cried for half an hour because i put my shoes on. yes me. then i read posts like this and see your commenters and realize i'm not alone and hopefully you have a bit more peace knowing every mother goes through tough days. you definitely have been through more tough days than is fair but you are so strong and will get through anything.

  10. Coco on July 30, 2012 at 6:27 pm

    I am so sorry! I can't imagine how hard all of this is. I hope they get the results soon so you can put your mind at ease about at least a part of it. I don't have any good advice or anything. But if you lived closer, I'd come over and let you take a nap or something. 🙂

  11. J o s e y on July 30, 2012 at 7:07 pm

    Hang in there Elizabeth – you are definitely not alone. I was so miserable when I was pregnant with Stella, adn I cannot imagine doing that again with a toddler. Just do the best you can, sleep when you can, and hopefully Grayson will reach a happier place developmentally soon. ((HUGS))

  12. Courtney on July 31, 2012 at 3:43 am

    First of all – yay for Grayson not having seizures the last few months. THAT'S HUGE! Reading that made me very happy.And your mother is right, some blessings are hard. My sister had a surprise pregnancy and it rocked her world in a not-so-good way until it finally sunk in and she was able to get excited about it. I already worry about how Matthew will feel when we have another baby – and we don't have another baby on the way yet. It's normal to worry, and I think it's even more normal to worry when you have a child who needs so much of you so much of the time.Hang in there.

  13. Alex on August 1, 2012 at 10:18 pm

    I would be shocked if you weren't having a hard time with Grayson and being pregnant. Of course you are! This is all very tough stuff! Be patient with yourself – I know you're really doing your best. Like you said, you will get through this. But be good to yourself and don't beat yourself up for recognizing and admitting that this is hard and you're struggling. I hope things get better for you real soon!!!

  14. Stefanie Blakely on August 6, 2012 at 3:11 am

    Sweet E, I've been meaning to comment for a week. I'm so sorry it has taken me so long.First and foremost, I want to tell you that it's going to be ok. I know many of the fears you have– do you remember the post I wrote when I was pregnant with Jack? I was terrified that I wouldn't be able to handle the two of them, I was stunned that I got pregnant when I did, I worried I wouldn't love Jack like I loved Liam and I was so physically miserable that I felt guilty about the time it took away from Liam. Likewise, I worried that Jack could somehow sense my apprehension about him… Your life has so many challenges, yet so many blessings. This new baby will be both for you. Think of all of the joy that Grayson brings to your life– this new baby will do the same. He/She will be such an amazing gift to Grayson!!I know this wasn't planned. I know that this isn't where you saw your life going right now. But it's ok… just different trip to Holland, friend. And it's going to be an amazing trip. xoxo.

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