I have really debated posting this for a very long time but I think I need to get this off of my chest.
Unfortunately I feel like there are some people in my life who don't completely understand what we (Joe and I) are going through.
My daughter has many special needs. She is globally delayed-meaning all over. She has not met many of her milestones.
She cannot hold her own head up, set up, feed herself, or even hold her toys.
Watching her suffer from relentless seizures daily is painful to say the least. I know what those seizures are doing to her forming brain.
On a daily basis I have to crush and mix meds (3 times/day), clean her bottles, g-tube extensions, syringes and med cups. Measure out her formula by the gram on scale.
Check her blood sugar and ketones in her urine twice/day.
I have to keep her g-tube site clean and dry, check the balloon on her g-tube for the right amount of fluid so that is does not come out.
I have to deal with our private insurance company, SSI, medicare, first steps and now a visual school on a daily or weekly basis.
I have to make doctor appointment and schedule therapy. I have to do said therapy with her daily. Make sure I change her position often because she can't.
On top of all of that she needs things every other baby needs, baths, diaper changed, play time, rocking, cuddling.
Now I am trying to plan her 1st birthday party (and have gotten no where) We just did her one year pictures.
I don't sleep much and when I do I wake up often worrying about her or what needs to be done.
My blood pressure has been high and the meds are not helping again (calling the dr in the morning) I have no time to cook healthy meals for me and Joe-thank goodness for church family!!
Joe and I have not been on a date or even alone in the same room in months (like over 6months) and if we did have alone time I am sure we would both just want to sleep.
Joe works a 40+ hours/ week and takes care of a lot of the things around the house because I just don't have time to do much else. He also runs off of minimal sleep daily. I can't tell you the last time I made my bed or cleaned my bathroom.
I did not say all of this because I want pity or everyone to say what a great mom I am. I have actually turned off the comments for this post alone because of that.
What I am trying to say is, I barely have enough time to shower let alone make phone calls. I miss my family and friends and feel very isolated. I need people to call and check on us, even if it is only listening to a voicemail because I could not answer the phone. If I am busy I simply won't answer the call. I turn my phone down if I am sleeping and it does not wake Emily up if she is sleeping.
Please right now don't expect too much from me. I don't have much to give and what I do have is all being given to Emily.
I am so thankful for the people I have in my life and I don't want this to sound like I am an ungrateful person. Joe and I are so grateful for the many blesssing we have recieved during all of this. These are my feeling, right or wrong. I pray that no one is offended by my words we just hate feeling isolated.