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    Our Journey With Special Needs

    I feel as though my experience as a mother has been somewhat unique (at least I don’t meet many people in my circumstance). I had a fairly typical pregnancy. I had one pregnancy loss, but my doctor said that what I went through was fairly common, and I should have no reason not to try again. Even with the encouragement I was super nervous.
    I was finally feeling like I was in the homestretch of my pregnancy, and that everything was going smoothly, but around 36 weeks I started to feel a strange pulsating sensation in my lower back. It was not super painful, but it was uncomfortable, and I had a very bad feeling about it, so we decided to get it checked out at the hospital. As we were pulling in the driveway I felt a flush of fluid run down my leg. I thought that my water had broken, and started to get a little excited actually. I assumed I was just going into labor, and was nervous, but so excited to finally meet my little girl. I looked down, and the car was covered in blood. I had passed a blood clot to the placenta that caused a full placental abruption.
    We both came very close to losing our lives that night. I was stabilized after two blood, platelet, and plasma transfusions. My daughter was born without a heartbeat or breathing for nearly 20 minutes. After getting her somewhat stabilized she was put on life support, and a cooling blanket that put her in a hypothermic state for 72 hours to allow her brain a chance to rest. Upon coming off her cooling blanket she went into seizures, and there was a big question to if we would ever be bringing her home. She struggled to be weaned off of life support, and we did not even hear her first cry till she was nearly a month old. It was consistently the scariest time of my life. Coming home to an empty nursery every night was devastating.
         
    She eventually was transferred to Children’s NICU for her first surgery for a placement of a gastric feeding tube. She has coordination issues, so feeding in the typical sense is very difficult. She was then given the diagnosis of quad cerebral palsy in addition to original diagnosis of HIE (basically means brain damage caused by oxygen deprivation). I have always been a perfectionist, so having a special needs child is not something I felt like I was capable of handling. But, through this experience I have found people just adapt. Everyone has there own reality, and this is ours. Instead of bouncers and rattles, we have medical equipment and feeding pumps.
       
    As we are heading into the one year mark, her birthday is two days after Christmas, it is bittersweet. I’m so impressed by how far she has come, but it’s hard not being affected by other children reaching so many milestones she has yet to meet. Overall, I’m well aware of how lucky we are, and how much worse things could be, but I’d be lying if I said I’ve completely come to terms with things. I see her struggle so hard to do the most basic of things people take for granted. But, she continues to show progress with all of her therapies. It may be at a pace I’m not accustomed to, but this whole experience has also been a hard lesson in patience. They are not playing when they say inchstones and not milestones.
         
    She now smiles and interacts, has her favorite shows and toys, and her own unique personality. None of this seems like a big deal, but she was almost five months old before she even really made eye contact. I have become so codependent with her throughout all this. I’m so scared to leave her with anyone. I feel like we have been through so much together, that I am really the only one that truly understands her. I know this all sounds terribly depressing, but sometimes I feel like I have to express how far we have come, so people can understand how truly amazing she is. I’m not sure if parents of typical babies love this hard, I’m sure they do, but it’s hard for me to imagine anyone loving anything more than I love this little person.
    -Sarah Hayse, @sarahhaysek