In May of 2008, my husband and I found out we were expecting our second child. Throughout the pregnancy, things seemed off. At 30 weeks of pregnancy, we found out that something was wrong with our daughter. No one could really determine what was wrong, but ultrasounds were showing signs of concern. Kaylee was born on January 14, 2009, three weeks early, not breathing, and making no attempt to live. She was quickly intubated and put on a ventilator to breath for her. Test after test was ran, but everything kept coming back normal. This child clearly had something wrong. She didn't move, her hands were clenched in fists, she wouldn't swallow, and she absolutely couldn't breath on her own. Through the aid of some amazing nurses and occupational therapists who worked very hard for Kaylee, we began to see small signs of hope. Eventually we were transferred to the Mayo clinic in Rochester MN, still trying to find a diagnosis. Kaylee literally had a line of various doctors lined up to take a look at her and try to determine what was going on with this tiny little girl. It was then we finally got a diagnosis. Kaylee was born with Congenital Myasthenia, a neuromuscular condition, in which her muscles fatigue rapidly, and rob her of the ability to do everyday tasks. Kaylee is most affected in her facial muscles, making swallowing very difficult, along with closing her mouth, and speaking. As a result of these issues, Kaylee is fed via G-tube, has a tracheostomy, and depends on an iPad application to help with communication. I had always thought that I'd be a strong advocate for my child, especially if they had any special needs. Turns out, I wasn't. I was very caught up in my own grief and wondering "why did this happen to me?" Thankfully, my husband was the strong advocate Kaylee needed. He pushed the doctors hard with questions regarding Kaylee's progression through life, and spent countless hours researching anything and everything that would help us better understand how to give Kaylee the life she deserved. Once we had a diagnosis, the next steps were preparing Kaylee and ourselves to bring her home. As excited as we were, we were also scared to death. We would now be responsible for for taking care of a medically fragile child in our home. I remember thinking that if my child dies, it will be because I wasn't able to keep her alive. I wasn't smart enough to save her in whatever the situation might be. Again, fear overtook me and panic set in. We were blessed with amazing doctors and nurses who did a phenomenal job of teaching us how to perform the daily tasks needed, in order for Kaylee to come home. Finally, on June 4th, 2009, Kaylee came home. Along with Kaylee came in-home nurses, who would spend 18 hours a day, in our home, helping us to take care of our little girl. This added another layer to the anxiety I was already experiencing. We were basically training these nurses how to care for our daughter, and also having to get used to having a stranger in our home for the majority of the day. The transition was tough, and there were days I wondered how we'd ever get through this journey. My heart ached for our older child who had been shuffled back and forth between grandparents and home for approximately 6 months. He too worried constantly for his little sister. He loved her beyond words, but also struggled with having these nurses in our home. Many, many nights I cried myself to sleep. This was not the life I had imagined for myself, and quite frankly, I was pretty mad about it. I loved my daughter dearly, I really truly did, but I lived in a constant fear of failing her. Through the years Kaylee has become stronger and has made leaps and bounds of progress. While many of her milestones are delayed, she is meeting them. It means so much more to us to see her work so hard and finally accomplish the task. My husband and I have created a bond with one another that we would have never known had it not been for this journey. We know to appreciate the very little things in life, for they indeed are huge! We've had to be brutally honest with each other regarding our fears for Kaylee and our wants for her. We beat ourselves up frequently wondering what more we could be doing for her. I won't lie, there are days that I long for the idea of leaving the house with JUST Kaylee and not Kaylee and a suction machine, and an extra trach, and an extra G-tube, and extra 2x2s, and feeding extensions, and deep suction catheters...etc. I long for a day when our schedule isn't planned around feedings and meds, but rather how much shopping we are trying to cram into a girls day out. I long for the days that we don't have to worry about having quality in-home nurses who are dependable, and will actually build a relationship with Kaylee. This fall Kaylee will take on Kindergarten. I'm thrilled for her and sick over it all at the same time. I worry about her acceptance from others while in school, and other hurdles she'll run into in this new chapter. Kaylee is a spunky, sassy little thing who loves to play with others, so I'm hopeful she'll have a great year. We aren't sure what the future will hold for Kaylee, or for us, as her parents. I do know however, that no matter the amount of fear and stress we've endured, I'd do it again in a heartbeat, if it meant seeing the joy and happiness in her eyes. We've met some truly amazing people throughout this journey and she has made us better human beings. In the beginning of Kaylee's life, I saw her disorder as a burden, but now, 5 years later, I can see that is has been a gift from God.
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