the long haul
So I haven't really written anything of significance lately. And I haven't even really updated about our lives or about how Emmaus is doing. My bad. I think I have been kinda in a funk about the reality of my life now. It is hard work having a kid period. And having a sick kiddo is hard work plus some. Some days are good days and then I feel like on the good days we spend a lot of time "working"- which means doing her therapy exercises, trying to make her stronger, productive play, reading books, more exercises...ect. Then we have bad days that consist of lots of seizures and a very sleepy little babe. Shes been very sleepy lately(sometimes with seizures sometimes without)- I am thinking that is a medication side effect. One day last week she slept from 1:30pm till 7:30pm and then again from 945pm-6am...Yah- that isn't normal for a 4 month old.
I wish we could just have normal days. You know when you have a kid without any issues and you just do normal things. I found myself feeling guilty last week because she was having a good day and we were out of the house most of the day so didn't work on any of her developmental stuff. (Yes I know this isn't healthy-and it is OKAY for us to have a day out) Regardless. I long for normal days. And not "good" days or "bad" days.
I am watching the kids I used to babysit for this weekend and I am so excited to get to live in their normal healthy world for the weekend.
Emmaus had PT today and Dan got to meet our therapist. (we both love her!) I called him later in the morning to see what his impressions/thoughts were. He said he was feeling a bit discouraged and he just realized how much we need to work on with Em. I felt the same way. And even thought it isn't a great feeling to have it was nice not to be alone in that feeling. I am trying hard to find a balance between helping her develop and living a normal life. Part of me thinks- who care's if she isn't interested in toys...or she can't walk till she is two! IS she happy? Is she loved? Is she being cared for well? yes- okay then we are obviously doing our job.
We are settling into our reality. And that is tough. We were in brand new parent mode for the first 6weeks...then things started to be calm and then she started having seizures a couple weeks later. And then we were in crisis mode for a while because of that. And now we are settling into reality. I think crisis mode was easier. You have the mindset of "We can handle anything for a little bit" turns out though- this isn't for a little bit. Its for the long haul.
Yah- I know this sounds super depressing. Even with all of this stuff she is such a joyful child. Have I mentioned lately she might be the cutest kids ever? Or that she is quite the little talker? Or that even though she is getting so big she still loves to snuggle with her mommy? There are lots of sweet things, happy things, joyful things in our life and there are some not so fun things too. But we have joyful times and lots of love and that is enough.
On another rant... IT IS IMPOSSIBLE to give a baby 15mls of meds!(twice a day) I thought I had figured out this great new system (it worked once) where I give them while nursing so she doesn't know through this feeding tube thingy..until she started biting me! OUCH. She is a smart little thing. She can taste those meds in a bottle...on the breast....she doesn't swallow when you blow in her face (like every other baby I have EVER encountered). Its a task. And some days we both cry through the process.
And I leave you with this...
Just about the cutest thing ever. She was wide awake and then all of the sudden got super sleepy and fell asleep like this. *her head kinda looks like a cone head-but I assure you it is just a weird angled picture. I love that kid- she looks so cute in her PJ's.
Love-
La
I wish we could just have normal days. You know when you have a kid without any issues and you just do normal things. I found myself feeling guilty last week because she was having a good day and we were out of the house most of the day so didn't work on any of her developmental stuff. (Yes I know this isn't healthy-and it is OKAY for us to have a day out) Regardless. I long for normal days. And not "good" days or "bad" days.
I am watching the kids I used to babysit for this weekend and I am so excited to get to live in their normal healthy world for the weekend.
Emmaus had PT today and Dan got to meet our therapist. (we both love her!) I called him later in the morning to see what his impressions/thoughts were. He said he was feeling a bit discouraged and he just realized how much we need to work on with Em. I felt the same way. And even thought it isn't a great feeling to have it was nice not to be alone in that feeling. I am trying hard to find a balance between helping her develop and living a normal life. Part of me thinks- who care's if she isn't interested in toys...or she can't walk till she is two! IS she happy? Is she loved? Is she being cared for well? yes- okay then we are obviously doing our job.
We are settling into our reality. And that is tough. We were in brand new parent mode for the first 6weeks...then things started to be calm and then she started having seizures a couple weeks later. And then we were in crisis mode for a while because of that. And now we are settling into reality. I think crisis mode was easier. You have the mindset of "We can handle anything for a little bit" turns out though- this isn't for a little bit. Its for the long haul.
Yah- I know this sounds super depressing. Even with all of this stuff she is such a joyful child. Have I mentioned lately she might be the cutest kids ever? Or that she is quite the little talker? Or that even though she is getting so big she still loves to snuggle with her mommy? There are lots of sweet things, happy things, joyful things in our life and there are some not so fun things too. But we have joyful times and lots of love and that is enough.
On another rant... IT IS IMPOSSIBLE to give a baby 15mls of meds!(twice a day) I thought I had figured out this great new system (it worked once) where I give them while nursing so she doesn't know through this feeding tube thingy..until she started biting me! OUCH. She is a smart little thing. She can taste those meds in a bottle...on the breast....she doesn't swallow when you blow in her face (like every other baby I have EVER encountered). Its a task. And some days we both cry through the process.
And I leave you with this...
Love-
La
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