My Life With Katie: Month 3

Many moms have used the “What to Expect When You're Expecting” book series during their pregnancy and into the toddler years.  These books were indispensable to me when my twin girls were babies.  I was a nervous new mom and had no idea what to expect at one week old—let alone what developmental milestones they should be hitting at three months. 

Those books helped me to know that everything the girls were doing—or not doing—was perfectly normal and that I had nothing to worry about. It gave me piece of mind to know that the girls were right on track. Today, it hit me for the first time since Katie has been home that I do not have a book on “What to Expect for Your Down Syndrome Baby.”  

Today I realized that she is not doing what the girls were doing at this age. Up until this point, I had been basking in the glow of what a beautiful newborn baby girl I have. She needed to be fed, changed, bathed and loved just like any other baby. All this time, I have described her as an “easy baby,” but thinking that perhaps she seemed easy because she was only one rather than the two I was used to. My heart is now heavy with the knowledge that she is not a normal baby. She will never be. She has Down Syndrome. 

I have known since I was 19 weeks pregnant that my daughter had Down Syndrome. After my preliminary blood tests and ultrasounds showed abnormalities, my husband and I elected to have the amniocentesis procedure. We thought we would rather be prepared.  The procedure itself was difficult. It was not painful per say—just scary with the chance you could miscarry. The day of my procedure, my wonderful mother-in-law, came to stay with the girls and tackle the five-story pile of clean laundry that sat on the dining room table. 

My husband and I went to the appointment and he held my hand and reassured me every step of the way that everything would be fine. I will not go into all the details of what the procedure entails, but it is very emotional. I was feeling vulnerable and was embarrassingly tearful. The procedure took less than a minute, but I felt as if I had aged five years.  I spent the next few days on bed rest feeling crampy and exhausted.

But everything went fine. It would be a full week before we received the results. It was the week that would not end.

I have been crying a lot over the past few days.  About once a day I feel a wave of self-loathing come over me as I am sad and angry about Katie’s condition. Katie is healthy and does not have a lot of the health conditions that come along with Down Syndrome. Her heart is strong, her intestines are functioning normally, and she is able to suck and swallow on her own. I am blessed. Not everyone is so lucky. 

But as awful as I feel admitting it, I don’t always feel lucky; I feel sad and overwhelmed.  I question whether she really knows I am her mother. Everyone tells me there is no doubt, but when I pick her up there is no immediate reaction. Katie neither seems happy or discontent when I hold her. She is just a baby who seems to go with the flow. Any mom will tell you a baby who is able to adjust to any situation and “go with the flow” is a gift from God. 

I know Katie is a gift from God. I feel humbled in knowing someone thought I was strong enough to handle such a miraculous gift. Tears of love fill my eyes and my heart when I look at her.  My heart feels full—almost bursting. But even with all the blessing and miracles I know have been bestowed on me and my family, my heart feels as if it could cave in at any second. The weight of wanting to be the best mom to Katie is much heavier than I imagined.

I began this blog in the hopes to help other moms and families navigate through not only the emotional struggle but the day to day life commitment that comes with having a child with Down Syndrome. Thank you for joining me through Katie’s birth story and my life journey as her mom.