You know from the day Gabrielle was born I have believed that God was trying to teach me something. That she was put into mine and Barts life for a reason. Our first lesson has been faith. Having the faith in God that he would guide and instruct us on not only how to be parents for the first time but on how to take care of such a carefully designed child. Our second lesson was in patience. We have had to learn patience with not only Gabrielle herself but with her treatment times and the doctors and nurses that administer these things. The third lesson that I am currently learning is tolerance. I have recently come in contact with a grown adult that was born with the very same condition as Gabrielle. I have not met this woman in person only over a private support group page. She stated that we as parents are living in a state of denial. She also went on to say that the fact that we call them adorable, well adjusted and positive was beyond her understanding. This woman has been on my mind at least one moment out of everyday ever since. I just can not get her or her statements off my mind. I will not share any of the other personal information she shared as we are a private group and I will keep her privacy. I am not oblivious to the trials that Gabrielle will have ahead of her. This birth anomaly is completely unpredictable and there are 100 different twist and turns our story can take. Gabby is one of the lucky children in our group... she has had only 4 surgeries in 4 years (that minimal amount is almost underheard of) most of the children are already well into the double digits. It also occurs on my mind daily that it is a possiblity that Gabrielle may end having to be in a wheelchair or walk with some sort of aid. I pray everyday for public acceptance of her. Currently when seen in public everyone wants to ask about her and talks of how adorable she is but what will happen when she is 10, 20 or 30? While things have changed over the years ignorance still runs rampant along with not having filters. There have been many occasions where I have overheard people question "why does she walk funny?" yet they never walk up to me and ask. I tend to be pretty open about Gabby's condition because I want her to accept herself for what she is but it is a fine line to walk because I also want to respect her privacy. I have even heard her herself question what is wrong with other children that we have encountered in the hospitals that we stay in for surgeries. I am trying to teach her that she should respect their condition and we do hers and that just because they are different as is she that different isn't bad. I would hope that with all of the different ailments in the world today: autism, down syndrome, cerebrel palsy, cancer, etc that parents are teaching their children acceptance and not pointing out the negative. I'm sorry, I can't help but feel that I am rambling but sometimes it just helps to get it out there and off of my mind and chest. Moving on to more postive news!
Gabrielle had her first bladder infection since having her bladder closure over a year ago. Is this good news... no! But it is really good considering she made it a whole year getting her first bladder infection. So far she seems to still be doing fine since the big surgery last year. She does complain sometimes that her hips bother her and we are trying to get her in to see a orthopedist to address any concerns while we are in New York in August. We will be traveling to visit New York Presbytyrian Hospital which is where her urologist has moved to. While there she will have a cystogram performed under anesthesia and also have a sutcher removed that didn't dissolve as planned from the last surgery. All of this should be done outpatient pending no complications. Also coming up in the fall Gabrielle will be starting Pre-K... I still can't believe it! I will make a post once we have been to New York and let you know how the procedure went. Thank you everyone that follows Gabby and our family stories. I have also included a few pictures that we had taken back in the spring.
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| Our little lady is growing way to fast. |
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| The whole family. |
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| Gabrielle and Avery |
