Rough Night *Edited in the Morning

*I wrote this post last night, after a hard day. This morning my husband and I discussed what put me over the edge, because really, it was just a normal day that included two very good meetings with her physical therapist and her teacher, that I thoroughly enjoyed. I realized that it was the sheer amount of time and responsibilities on me yesterday in particular. We discussed how to change days like yesterday in the future. You see, my husband is a huge help. He works from home, and while I do most of the care and all of her appointments, as that is my job, he helps much more than any "normal" husband would. He loves me and Sweet B so much that it is his joy to help. I'm very blessed.


*I had initially came on the computer with the intention of taking down this blog post. It is too raw. However, I decided to leave it it in order to document just how much of a marathon we are running, and to let other moms with special needs kids know that we all feel like this at times. It's just part of the territory. Also, I do not have a paying job right now. I have no employers to impress so it really doesn't matter who reads this. Also, if my friends and family are reading this, and I know some of them are, I don't have to hide what we are going through. If they are kind, they will not judge and they will walk beside me in this journey.


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Tonight I'm in bed and having anxiety. Tonight I'm feeling like this is so hard and I don't know how I am going to keep doing this. I know I have to, and I know that I will, but I am exhausted, worried, and would like to sleep for a day and have someone clean my house and know that everything is going to be okay.

Today, I participated in all of these things (note: I will not include things that "normal" parents do):

-Started bright and early with physical therapy. As I stared at the baby next to us, I was reminded of just how far behind Sweet B is. I left with her physical therapy homework on my mind and how I was going to incorporate it this week.
-I spent 20-30 minutes for four feeds doing ora.l stimulation and alternating between giving her a bite and sticking a vibrating toothbrush in her mouth in the hopes that she would ingest two teaspoons of food and not puke.
-I tube-fed her after every feed praying that she would not throw up.
-She had a lesson with her teacher today, which was fabulous, until the end when she decided that her teething issues were too much and proceeded to throw puzzle pieces.
-I "brushed" her and did joint compressions on her every single two hours.
-I did forced tummy time with her in hopes that she would do something resembling crawling. She didn't.
-Tonight I'm listening to her wake up every fifteen minutes from her continuous feed on her pump because she keeps refluxing, coughing, and waking herself up by screaming.
-I administered various reflux medications three times today, and did the cleaning care of her g-tube site and applied ointment various times during the day.
-Now I try to sleep as I worry about her aspirating on her reflux and not being able to breathe.
-I think about how I feel alone and how hard it is when other parents don't understand just how hard this is for me. They take for granted when their child crawls, or walks, or simply eats, and I sometimes want to tell them to stop complaining about the mundane, normal parenthood issues.

Of course I'm leaving out the hugs and snuggles, and how she feel asleep briefly while I was rocking her , woke up and smiled at me, hugged me tighter, and went back to sleep. I didn't mention the deep stomach laughs every time I made a face at her, or the way she would flirt with me and giggle every time I flirted with her. I didn't write about the way that she sat in her bathtub and made silly faces and clicked her tongue at me every time I did it to her. I left out the way that she screams every time I leave the room and then looks around to see if I'm listening to her, and then scrunches up her face and does it again. I also forgot to mention how she mimicked her teacher when clapping or banging objects together and even did what her teacher told her when she told her how to exactly play with a toy.

I definitely didn't mention how she is developing such a toddler personality, and how she is so smart, and knows exactly what I am saying.

And did I tell you just how wonderfully stubborn she is? That I really think that she could crawl if she really wanted to? If she would just put her hands on the floor, a whole new world would be opened to her. She knows exactly what she wants and is quite happy with everything in her life. I guess I should have mentioned that.

I should have mentioned the smell of her which still makes my eyes water with love and brings me back to her NICU days where I could only think about her twenty-four hours a day.

But days like today I am frozen in fear...When will she walk? When will she crawl? When will she eat? Will she ever be able to sleep through a night without waking up coughing from the reflux? Will she have to have a fundolipication surgery? Will I have to sit in the hospital waiting room while my sweet baby is put under, while I feel like I am going to throw up and wait for her surgeon to come out? Will that surgery cause her to retch constantly and cause her even more problems?

Sometimes the fear is too much, and I have to have my husband give me a foot massage, bring me my lavender pillow, and pray that the anxiety will leave.

Tomorrow is another day, and I need to trust that God loves me and knows what He is doing. He placed this precious little soul in my arms, and he will equip me to care for her. God gave me the privilege of raising this little girl. I am one of the lucky parents. I get to see miracles happen and I get to notice just how special every milestone is. But it's still hard.