There are days like today that challenge ever fiber in my being to be nice. I want to walk outside and scream at the top of my lungs for someone to listen to me. I watch my son have the occasional tantrum and think to myself... yes, I'm having one of those on the inside. I would love to jump up and down, cry, beg and then whine my way into getting everything I want and need for Cecily. Last night Cecily vomited for the first time since her G/J tube procedure. It burst my bubble and admittedly - burst my bubble of hope. I had been cautiously optimistic but fearful that the vomiting would return. Today, it returned with fury. Ironically we actually were at the hospital for 3.5 hours today... but Cecily waited until we got home to vomit. Then she proceeded to waver between extreme fussiness and lethargy all day. She was not herself. She was miserable. She was crying out in pain and I am helpless to help her. I want to scream. I want to stand on my head and wave a white flag. But what would that do? Tantrums are not for thirty-something’s...
So, tomorrow we will fight with love and not malice. We will try and get that second opinion (which I thought we had already received) and try and keep our composure. We will be strong and we will not let our anger or frustration prevent us from advocating in the best way possible for Cecily. We will get a second opinion. I will focus my efforts and neurotic Mommy mentality into finding a positive improvement for Cecily. My husband will continue to be logical, rational and quietly strong. We refuse to believe that this constant pain and suffering can't be stopped. Cecily may have an unknown genetic syndrome but we will fight for more answers.
It is on days like today - our 8 year anniversary - that I have to smile and again be grateful. If there was anyone in the world I would want to face this challenge with it would be my husband. He is calm when I am crazy. He is nice when I get mean. And sometimes I am calm when he gets crazy (which is rare!). We are a good team and together we will work to ensure Noah and Cecily get the best.
A quick note on Cecily's Closet! We've had more little wins - that tally up to bigger wins! We're working with a fabulous artist for our second room makeover. She is a gift and if anyone is looking for custom wall art, murals or fine paintings, I encourage them to check out Art by Tasha. We will have an article written up in a local paper and we've had a few more designers reach out to us proactively to help! We're putting our efforts towards organizing a giant garage sale to raise more funds for Cecily's Closet. We've been given some great donations and this is just another small way we're trying to spread the word and fund our efforts. Thanks to the support of family and friends. And thanks to my husband for always supporting me, even when I have crazy ideas! Happy Anniversary! Onwards and upwards!
So, tomorrow we will fight with love and not malice. We will try and get that second opinion (which I thought we had already received) and try and keep our composure. We will be strong and we will not let our anger or frustration prevent us from advocating in the best way possible for Cecily. We will get a second opinion. I will focus my efforts and neurotic Mommy mentality into finding a positive improvement for Cecily. My husband will continue to be logical, rational and quietly strong. We refuse to believe that this constant pain and suffering can't be stopped. Cecily may have an unknown genetic syndrome but we will fight for more answers.
It is on days like today - our 8 year anniversary - that I have to smile and again be grateful. If there was anyone in the world I would want to face this challenge with it would be my husband. He is calm when I am crazy. He is nice when I get mean. And sometimes I am calm when he gets crazy (which is rare!). We are a good team and together we will work to ensure Noah and Cecily get the best.
A quick note on Cecily's Closet! We've had more little wins - that tally up to bigger wins! We're working with a fabulous artist for our second room makeover. She is a gift and if anyone is looking for custom wall art, murals or fine paintings, I encourage them to check out Art by Tasha. We will have an article written up in a local paper and we've had a few more designers reach out to us proactively to help! We're putting our efforts towards organizing a giant garage sale to raise more funds for Cecily's Closet. We've been given some great donations and this is just another small way we're trying to spread the word and fund our efforts. Thanks to the support of family and friends. And thanks to my husband for always supporting me, even when I have crazy ideas! Happy Anniversary! Onwards and upwards!
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