This is my second post as part of the summer blog hop. I haven't decided what was worse...hearing Hailey's diagnosis or coming to terms with the diagnosis. Everything about Hailey's arrival put this mom in a tizzy. I am a very OCD, take control, plan everything out kind of person. I had a giant to-do list that needed completed before Hailey's arrival. My csection was already scheduled because I had a difficult delivery with my first and an emergency csection with my second. I was not only considered advanced maternal age, but also high risk because I had high blood pressure. We had all the kids' bedrooms painted and redecorated about a week before Hailey was born. My surgery wasn't scheduled until March 21...my brother-in-law's birthday. I had 5 more weeks to finish the last of the to-do list completed. Make a few freezer meals (csections aren't fun to recover from), make sure everything was in good order for the boys' school, basketball season would be over for both my husband who referees and my son who was playing, a few more items needed purchased for Hailey for home, few more items for my hospital stay, etc. I feverishly made that list out the night before I went into labor. My husband laughed because I was so adamant that we discuss the list. He questioned if I thought our peanut was coming early. I replied, "Without a shadow of a doubt. I have a feeling she will come in a couple of weeks." Well, I was right that she was coming early, but I never would have dreamed she would make her debut less than 24 hours after that conversation.
So you see, from the start she rattled my world. She came 5 weeks early. She came natural and not csection. She didn't nurse. She had Down syndrome. She had a heart defect. All things that I didn't "plan"...all things that were not on my radar. All things that were 100% out of my control. I cried a lot those first few months for many reasons. There were dreams that I felt were never going to happen. Some of those dreams realistically, will probably still never happen. I thank God every day that we had a very calm, knowledgeable neonatologist. I will never forget his initial advice. He gave us two websites to do all of our research on: The DSAGC (the Down syndrome association of Greater Cincinnati) and the Cincinnati Children's Hospital website for both a VSD (her heart defect) and about Down syndrome. He forewarned us that many printed books could be over 10 years old and then that articles on the internet can also be old and out-dated. He also told us to not look at an adult with Ds and think that is our daughter's future...to not even look at a 10 year old and think that is what our future holds. There is no telling what our daughter's future holds because every year, every day there are changes in technology, education and the medical field that can change her future. That was good advice. Nothing was grim. Unfortunately, it didn't help those first few months. At first I cried about Ds and what it had stolen from her. Then I cried about her heart defect. The heart defect would eventually kill her, not her diagnosis of Down syndrome.
I then had a job. Something I could control. I could make her strong enough for surgery. I could help her gain weight. It was my mission. Unfortunately, I put too much pressure on myself and I failed miserably at it. I set my alarm to go off every three hours. I would wake up, pump, feed her, put everything away and start over again. Towards the end, it was taking Hailey over an hour to finish a 3 ounce bottle and many times she wouldn't finish or she would throw up part of it. I couldn't do my job. She wasn't gaining weight and I held myself personally accountable for it. Yes, in hindsight, it wasn't my fault and boy, was I sleep deprived! After open heart surgery, I breathed a little easier, but then I had nothing to hide behind. I had to face Down syndrome. I called our local Ds chapter and someone came to my house to meet with me. I reached out to the names and email addresses others had given me over the past few months. I reached out to a priest from my hometown. He helped me through the holes that her diagnosis had made in my faith. I also read blogs written by moms who had children with Ds that were a little older than Hailey. They were taking vacations. They were going to baseball games. They were going out to dinner. They were "normal" families.
Something else happened during this time....I fell head over heels in love with my daughter. Yes, I loved her before, but I started to see her for who she was. I started to see her personality. The spunk inside her. The determination. I heard her laughter. Her energy. I didn't see Down syndrome. I didn't see a disability. I only saw the beautiful, blue-eyed, dimpled-smile little girl. I saw only Hailey.
Hard to be upset or sad with this gorgeous face looking back at you.
Check out other blog posts about "coming to terms" here.