Today was hard........

But ended good.
First off I want to say that I hate the fact that the last several blog entries of mine have been depressing. I try to include the fun and bright spots in my life because IT IS NOT always gloom and doom. This is just a very trying time for me and I started this blog for 2 reasons. 1. To get my feelings out and not bottle up certain things. 2. To help any other parent out there experiencing the same things I am going through. So I am gonna just spill my guts tonight and I apologize if I upset anyone. It's not my intention. This blog is therapy for me.
So today Allen and Justin were going to go fishing. While they were gone Trish's (my friend...yes her name is Trish also)little girl Cameron was having gymnastics class. I figured I would tag along and help Trish because she also has a little peanut named Aubrey(whom by the way is my God daughter and 10 weeks old). So we get to the gym, Aubrey is sleeping peacefully in her carseat and Makily is sound asleep on my chest. I was tired because Makily was up and down last night with her button leaking. Cameron and her mamma bounce off onto the floor to get ready for class. It was humorous watching a group of 2 years olds doing some of this stuff. They are so funny and energetic. I love to watch Cameron "jump, jump" as she says. She does this cute thing where one foot comes off the ground and the other one goes up on her tip toe.....it's like a little troll hop! She thinks it's a load of fun though and encourages me to do it with her often by saying "jump tish jump"...sometimes she will call me Allen but hey whatever works! Anyway as I was watching these kids jump, tumble, roll, squat I start feeling this AWFUL tugg at my heart. I kept imagining Makily out there hand in hand with Cameron jumping up and down, giggling like maniacs screaming JUMP, JUMP!! The image was almost too much for me and I had to stop thinking about it so I wouldnt start crying. Then I notice this beautiful little girl. She had blonde curly hair like Makily's and gorgeous blue eyes. She was all over the place jumping and playing. My heart sank. I can't begin to express the longing in my heart to see Makily jumping, playing and laughing and screaming like that. I want her so much to have fun and sometimes I just feel like she got gipped in this world. I would give my left arm to have that vision of her and Cameron playing and jumping hand in hand come true. I am also reminded of the innocence in children through Cameron. SHE ADORES MAKILY. If we would let her she would carry her everywhere with her. When I take Makily's bib off....if Cameron can get to it, she will put it around her neck....wet, nasty and slobbery, she doesnt mind. Any other time you would try to make Cameron wear a bib, she screams, she hates bibs......it's Makily's bib, so it's "cool". She doesnt look at the differences in Makily. She just knows that Makily is her friend and that she loves her....this touches my heart in ways I cannott describe and I have tears in my eyes as I type this. We won't let Cameron get to close to Makily because well she can tend to get excited but we do let her rub Makily's head sometimes and she will look up at me and say "Kily....soft?"
Allen and I came home after the class and I just had a hard time. I was thinking about all the things Makily is missing out on and all the things as her mother I am missing out on and I cried all the way home. I cried about the fact that I shouldnt even really worry about her jumping....I have to focus on her eating, walking and such right now. Sometimes it seems like such a long road. It's hard for me to see the light at the end of the tunnell when Makily's having medical problems. Alot of the time I feel like I have 800 balls up in the air......things like feeding, breathing, leaking, dumping, retching, heart problems, ear problems, surgeries, diarrhea, medication, drs appts. that for the most part I have learned to handle all 800 of those "balls". It's when you throw in one more ball, I drop them all. I have learned to adjust to "my new normal" and handle my every day life, but when it comes to Makily having a medical problem, I feel useless almost. I just want to solve the problem and when I can't, it drives me crazy. THe last 2 weeks when Makily cries I get a knot in my stomach and my anxiety level gets so high. The entire time I am thinking "oh god please let her stop crying, her stomach will start leaking and then will bleed, please let me figure out what is wrong". The longer I can't calm her the more anxious I get. Last night was pretty bad and her belly did start to bleed some because we couldnt calm her fast enough. I hate it that I can't be positive right now, I feel defeated and VERY sad....my heart aches for so many things tonight. I have cried on and off all day long.
I did get out for about 4 hours of fun. Myself and 4 other girlfriends from high school went out and spent some time together, we laughed and joked and had such a good time and I REALLY NEEDED THAT. Cathie, Marissa, Kristy and Trish, thank you for bringing me some joy tonight you guys make me feel young again and I am so greatfull we are are still friends and still keep in touch...Marissa, I am sorry I laughed so hard at you...but OMG , THAT NAME, OH THAT NAME.....TOO FUNNY....well you know and I will leave it at that.
We take Makily to see the surgeon tomorrow. I will update when I can.