Is sometimes very difficult to cope with. There are the moments during the day that I find myself grinning from ear to ear because Regina has done another unexpected adorable thing (bouncing up and down with her toy guitar while the music mode plays, giving me kisses instead of the usual run and hide, etc.)....and then there are moments where I would love to yank my hair out because she is still awake at 1 in the morning screaming and squawking. And of course, I can't forget the constant appointment scheduling, and because of said appointments, I also have to schedule rides to and from through her Passport.
It's an ongoing headache, but thankfully, the moments I first listed come around often enough to continually remind me to take a long breath and remember why I do all of this. I chose to keep this beautiful baby girl for a reason. When even my church tried to push me into giving my daughter up for adoption, I was seconds away from spitting in their face. I had never had a child before, and the father being out of the picture was not going to stop me from facing the inevitably huge responsibility. In the long run, I would reap many rewards, mostly involving my character, morale and ability to take responsibility of someone other than myself. How could I honestly give something like that to a complete and total stranger? I wouldn't trust anyone other than myself to give my daughter everything she needs, not even my mother. No offense, but mother knows best, not grandmother or whoever else that claims they can handle it.
While I was pregnant with Regina, I never had a clue what I was in for. The doctor I went to did not do enough testing and didn't even give me more than one ultrasound! I didn't know Regina had Down Syndrome until AFTER she was born. When she was born, I believe (from what I remember...I had an epidural and forgot to keep pushing the button....so I was still in a lot of pain) my blood pressure dropped so much that they had to put an oxygen mask on my face. They immediately took Regina out of the room and when someone came back to give me the status, they told me she was going to need to be transferred over to Kosair Children's Hospital. They said that she needed to be hooked up to oxygen, given antibiotics, put under a billy light, be fed through a tube, etc. etc. She was in the NICU for 20 days.
When they told me that she had Down Syndrome, I was just happy to hear that she was alive and breathing, even with a little bit of assistance. The nurses told the friends that had taken me to the hospital that they didn't think I understood the full extent of Regina's disability. I was disgusted. My daughter had a disability, but was not physically impaired, blind, deaf, etc. etc., so she was NORMAL in my eyes. My youngest brother, Toby (short for Tobias), is borderline Autistic, so I believe to this day that that was what prepared me for Regina's disability. I think that it was fate. Whether it be God's will or just the world's way of preparing me, I am still happy that I got to experience a lot of the same with my brother so that I could be a more patient and more loving and more understanding mother. That is why I didn't want to give her away. Because I knew that at some point or another, I was going to be given the opportunity to teach someone else how to sit, stand, walk, talk, stand up for themselves, and to be whoever they want to be. Fortunately, I had a tough childhood. I say fortunately because I knew growing up that I would raise my child completely different. I would stand by my child no matter what, and support her in any way possible.
This past March, in 2009, Regina had to go in for open heart surgery. That was probably the hardest thing I ever had to go through/deal with in my entire life, besides her time spent in the NICU. She had her surgery on the same day as Robin Williams (little random fact...I found it very weird because her surgery originally was a different day, but when they rescheduled, it was on the same day he had his heart surgery...). I didn't think it was going to be as hard as it really was. I had no idea what I was in for. I was in the waiting room for hours on end, and then she was transferred to the ICU. When I first walked into that room.....I dropped everything, some stuff fell on the floor and I didn't care because I was in so much shock from what I saw in front of me. My daughter, lying there, hooked up to everything under the sun, her skin orange from the disinfectant...stitches from the GI tubes...I was horrified...and I immediately started crying. I don't even remember if I showered while I stayed there, I was so worried about her. When she finally came to, because of the tube they had down her throat for so long, her cries were so heart wrenching....I had never heard her cry like that before, and never want to again. We were in that hospital for about a week or so.
I have been writing for a good 30 minutes to an hour, so I will write more later. I hope you all enjoy this story, as it comes from my heart and I mean every word.