So to be completely honest on how this week has gone...two words have been causing me to have a pain in my upper back and made me have to inhale and exhale slowly to just keep breathing.
Denial and Guilt.
I'll start first with the denial and tie it into the guilt and how each of them come and go through my mind numerous times throughout the day. My mind...that is my biggest battle. From other Moms that have been in my position, I have been told my thoughts are completely normal. I am thankful that I am not alone in these feelings.
When people see Jack for the first time and know he has Down syndrome, a typical response is, "He doesn't really look like he has Down syndrome. Are they sure? He doesn't have many of the physical features. I don't see it Carissa." Honestly, I have had SO many people say this to me. So from early on, I would look at him and think, maybe they are wrong. I told Chris when we got home from the hospital that I felt like someone was going to call us and say they were wrong. I was thinking, oh my goodness, I started this blog and told everyone that my child has Down syndrome and he doesn't have it. What am I going to do now? How do I tell everyone that? When Chris told me on the night he was born that they "thought" he had Down syndrome I keyed in on the word "thought." I was waiting for the phone call. It never came. I wouldn't say I am the best listener at times but I started to question what the doctor had said the day he came in and said that the results came back and confirmed he had it. My best friend was standing next to me as we listened to him and last week I had to ask her if that is what she heard.
A surreal experience was pulling into the Children's hospital and being at the Down syndrome clinic two weeks after he was born. 15 days earlier, I would have never thought we would be jamming our weeks full of appointments and learning an abundant amount of information on Down syndrome. Sitting with the Genetic counselor and sharing our family tree, including information on pertinent health backgrounds from each side, was not what I wanted to do. Then she pulled out the print off that said it clearly, infant was found with an extra 21st chromosome. There it was. There was no mistake. The diagram she showed after that of how the chromosomes line up was a blur because of the tears that filled my eyes. My baby really did have Down syndrome.
So onto the guilt. A mother's guilt is real, it's deep, and it can steal so much of who we are. I experience a mother's guilt with Luke but never as much as I have these past three weeks. My personality plays right into this and I know it is not helpful to anyone. I think of all the things I should be doing, what books I should be reading, the exercises I should be having him do (I am aware that he is only 3 weeks old ;)...but mostly what I should NOT be feeling. Now knowing that he certainly does have Down syndrome, I have looked at him and instead of seeing my baby, I have just thought of Down syndrome. I am thankful that these thoughts don't steal all of my time with Jack, just flow in an out occasionally. I find myself just wanting to hold him, smell him, listen to his sounds, and watch him sleep. I cry thinking that I am missing some of this baby stage because my anxiety and fear of the unknown is stealing my joy of being with my baby. If I miss this stage, I will eventually have guilt for missing it. I feel the guilt when I bring my child somewhere and cry when telling someone he has Down syndrome, knowing a few of my friends that have had a miscarriage, deal with infertility, or lost their sweet baby. My heart breaks for them and I feel selfish.
Chris reminds me that we need to take every thought captive.
...but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.
I believe there is beauty here.
A few months ago I shared a song that I absolutely love. It reminds me that each person is on a journey filled with many hills and valleys and the desire to cry out to God. I do know that this song captures my heart at this very moment. Need You Now (by Plumb). Let this song move you like it has moved me. I am confident that God will give me the strength to just keep breathing and confident that He will stay right beside me. Because I have a baby that needs me now.
"Need You Now (How Many Times)"