Rough Week

Tonight, I’m exhausted and feeling pretty defeated. I really try not to dwell on the negatives of our particular situation, but I also want to be transparent and admit that sometimes a lot of the time life with Grayson is really hard. The day to day challenges as well as the fear of what his future will be like are difficult to deal with, and sometimes just seem to beat me down temporarily.

Poor Grayson has had a pretty rough go the last few days. After his seizures last Friday, we saw his neurologist for the results of his EEG, which was more abnormal than his last one, 10 months ago. This is discouraging because it’s more evidence that his brain issues are getting worse. Dr. R upped his seizure meds dose again.

The main reason we had the appointment was to get G’s Botox injections. He got 4 injections, 1 in each leg for stiffness and 1 on each side of his neck to try and get his excessive drooling under control. Grayson was already crying before the injections, and of then of course they made him hysterical. It was awful, but we made it. So far I have not seen any difference/improvement.

Wednesday, Grayson had PT and screamed throughout the entire session. We couldn’t do a thing with him because he was so upset. The only thing that calmed him was his swing, which has a 25 pound limit. G is 24 pounds. I am seriously panicking inside about the day where he can’t use the swing anymore.

Thursday was a really great day.  Grayson went to school and had a good day. The news that he LOVED music therapy (they said he laughed during the session and got to “play” an instrument) was about the highlight of my week. I also spent the day with my friend and her kiddos, and had my monthly Mito Moms dinner that night which was great.

Friday morning Grayson woke up irritable and fussy and then fell asleep 15 minutes before we were supposed to leave for school. By the time I got him there, we were late and Grayson started up with the crying again. I could not get him to stop crying and it just escalated into hysterics no matter what I did. I couldn’t leave him like that so I put him back in the car and took him to Target for a little while. When we got back to school he was still fussy, but I was able to leave him and his teacher said he had an ok day.

My sister in law Hannah and I picked him up from school a little early and we drove 3 hours to my parents’ new “ranch”. They bought a gorgeous property a few months ago in East Texas that is 39 acres and has a house and a guest house. This was the first weekend that some of our family was going to stay and G and I were supposed to stay until tomorrow. Ryan had to work this weekend, so he couldn’t come. My mom had bought G a pack n play, an excersaucer, play gym and some toys, so he should have felt right at home.

I don’t know why I think traveling anywhere with Grayson is going to be different than it always is. He does NOT deal well with change and new environments. It’s like his brain just can’t handle it. Grayson did 2 things this weekend: cried, and laid on the floor and listened to Veggie Tales. Lots and lots of crying. Saturday morning he woke up hysterical at 6:00 and didn’t stop crying until 8:30. I was so worried he was going to cause himself to have another seizure. THANK GOD for the weighted blanket– several times it was the only thing that calmed him down.

Last night he woke up all night crying, but thankfully slept until 7 am. But then the crying had started again as well as vomiting- he threw up 5 times before 10 am and obviously did not feel well at all. We decided to head back to Houston with my brother and SIL, who were coming back today anyway. Grayson was SO happy to get home, and even happier to see his Daddy- he just laughed and laughed while Ryan played with him.

It’s just NOT FAIR that we can’t take our almost 2 year old for a weekend away without him melting down for 2 days straight. I should be exhausted because of chasing him as he explored and had adventures outside instead of rocking his stiff little body like a 3 month old baby. I hate admitting that all this upsets me, but it does. I want him to have happy childhood experiences and not be housebound all the time, but after this weekend, I’m not sure how to accomplish that for him.

Thankfully, G is sleeping soundly and hopefully will stay asleep in his comfortable, familiar bed so we can all get some much needed rest tonight. I definitely need a battery recharge!

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13 thoughts on “Rough Week

  1. Oh mama. It IS hard. No one doubts how much you love G. But it's also okay to admit how hard it can be. Sending you huge hugs and prayers that this week will be easier for you – and G.

  2. Ugh, I'm not even sure what to say, but I want you to know that I'm thinking of you, and I am SO sorry that you cannot enjoy a "normal" weekend away with your toddler. How hard, for both you and for Grayson. Hang in there Mama…

  3. So sorry for the rough week and weekend too. 😦 I wish it was easier to travel and have great adventures, but regardless, he is having a happy childhood filled with love. And it's ok to be sad, this is your space to talk and be honest, and we are all here to always listen. Sending love and hugs!

  4. I wish I could reach through my screen and give you a huge hug!!! I can't even begin to understand the enormous challenges and weight on your shoulders. You are such a strong woman. As far as lack of adventures, we're with you. There are reasons we never leave the town we live in: hours and hours of hysterical crying. We bring earplugs everywhere we go actually. Glad to hear he had a good day at school though and loved the music therapy!

  5. Oh Elizabeth! I'm so sorry you guys had such a rough week/weekend. I don't know if this will make you feel any better, but when K was little we had the hardest time bringing her places. She was a lot like G in that she would spend the whole time crying if we were away from home or strangers were interacting with her. I don't know exactly when it changed for her, but it did. In e meantime, make sure to take time for yourself so you don't feel too "grounded" and remember that G doesn't think he's missing out because home is his favorite! I hope as G gets older, the same will be true for him. It is so hard to balance the struggles or today and the worries for the future…sometimes it is just too much! Hugs!

  6. Oh Elizabeth. I don't know how you do it. Truly I don't. I would beaten to a bloody pulp emotionally if I were faced with the challenges you are faced with. I would break down seeing my child struggle in the ways G struggles. I don't know how you stay as positive as you do. You have ever right to express the fear and anger and disappointment you feel. You have every right to yell 'it's not fair" when you think of the future you imagined for your son and the future he might have instead. It's such a hard reality to get accustomed to, it will probably never be easy. I just hope it gets better. Thinking of your and G.

  7. Oh wow. So hard. I can't even imagine. Don't they have a bigger swing available anywhere? You really can't go without that. It has to be so hard, wanting to give everything to your child, and feeling so helpless because he is just too sick. I have nothing good to say. Just, love and hugs and prayers. You are amazing!

  8. Oh, Elizabeth… I don't even know what to say. This post is so raw and real with emotions, and as hard as I'm sure it is for you to share this, I want to thank you for it. We are here to support you and posts like these help us understand just how hard things are for Grayson. I think it's wonderful that you stay so positive and upbeat, but I think it's equally important to get the "lows" out there, in writing. Your strength continues to amaze me. From the first post of yours I read once joining PAIL, I've always been challenged by you to look on the bright side – because there always is a bright side. You love Grayson so, so much and that just oozes from all of your posts. You're a wonderful mother!

  9. I think this is a great place to share your frustrations about the situation. All of us have thoughts and feelings that we feel guilty about. I think it's terribly hard sometimes to have a 2-year-old. And I don't deal with nearly all of the challenges that you do. But being honest is a great thing!!! And you're an awesome mom!!!

  10. It's not fair. And I'm going to tell you something you don't want to hear but you will realize soon enough – it is going to be exponentially harder, emotionally, when #2 comes. It is SO hard having a typical kid (come on universe, and be typical!) and a complex kid because then you feel like … what experiences am I making my typical child miss out on, and is that fair and … It IS worth it. All of it. But it's hard. And you are strong. And you love him so much. You're allowed to be angry and frustrated and upset.I hope you had a recharge weekend and are ready to wade back into the wars.

  11. i understand . . . I couldn't wait for summer to be over. Hearing about everyone's summer vacations made me so jealous and bummed because we've been restricted from traveling with Cody. So selfish of me! On the up-side, we with special needs kids truly learn to appreciate the little things in life like a good night's sleep or having that go-to swing!Praying for those simple things to be abundant!

  12. This must be so hard. Your common sense, down-to-earth attitude about everything that's happening is so inspiring to me. I wish I could fly to Texas and give you some hugs and some cookies. You are amazing. (((Hugs)))

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