Friday, April 24, 2009

Tough Thoughts

Nate is now almost 4 months old and I still struggle quite a bit from day to day. Some days I adore him and other days I just want to hit the rewind button and try again for a typical child. Today is the latter. I have just never faced a "trial" that I didn't see the end to...right now, having Nate seems like a huge burden to me. He still isn't smiling (very, very infrequently, but never at me) and that is really taking its toll on me. It's the first real test of how patient I can be with these delays he will continue to experience. I just feel like I will be able to connect with him more once he starts smiling...

Last night, Bob and I were watching Gray's Anatomy. A father was sitting by his 6 year old daughter's bedside and basically waiting for her to die. I said, "That would be so hard to lose a child." and Bob asked very insightfully, "Which one?". Ouch. That hurt. It hurt because it is truly the kind of tough thought that runs through my head each day. I have to admit that it was easy to recognize that it would be devastating to lose Cody, but part of me felt it would be a relief to lose Nate. What kind of parent thinks that way??? I just can't help's there and I'm admitting it. So many in this community of parents who have children with Down Syndrome say that our children with DS will bring such joy into our lives, but they haven't said when that will happen. I'm waiting and hopeful.



  1. Shannon (Crabb) CheesemanApril 24, 2009 at 2:18 PM

    Danielle - I thank you for your sincere honesty. Not many moms have the courage to talk about what is going on in their lives with their "normal" children and I applaud you for taking this journey and letting us all come along. You have always been a strong-hearted and courageous woman and I will keep you in my prayers. A mom needs to take care of herself in order to take care of her family and it can't be easy with these thoughts and worries and feelings... For me, just with three kids who are all perfectly fine and healthy, there are days...WE ALL HAVE THOSE DAYS...but I hear you and understand and feel for you. You will get through this one step at a time, and somehow, it will be a blessing even though you can't possibly see or know how right now. The joy is in the expectation, right? A glimmer of hope, a light at the end of the will be there. IT IS THERE. We can't see all the miracles God has in store because then what would be the fun? The joy? The HOPE? We live in in hope and faith... And God bless you in the meantime as you wait upon YOUR miracle.

    Shannon (Crabb) Cheeseman

  2. Hi Dani, I found your blog via Facebook. I saw that episode of Grey's last night and I cried and cried. I completely understand your thinking on this. I know this can't compare, but I had those moments during Morgan's first months. She was extremely colicky and I had some major PPD/anxiety going on. The word "relief" was familiar at that time. I really wondered what I'd done with my life. Again, not a fair comparison to what your experiencing, but I just wanted to let you know that I understand those feelings. Of course now we can't imagine our life without Morgan. We're now expecting #2 and we chose not to have all the genetic testing. Everything looked good on our u/s, but you never know until the birth. We just have trust that the Lord knows what He is doing. We'll keep praying for you guys. Hopefully we'll be able to make a trip to Portland soon and we'd love to see you.

    Much love, Meg

  3. I applaud your honestly - it's refreshing. You are transparent and that's a rare, but wonderful quality in someone. You may not see this now, but I'm sure your experience is making you a stronger woman, spiritually, emotionally, practically, etc. You're inspiring! I'll confess that when we found out we were expecting #2, and had a 3 MONTH OLD, we were *not* excited and also had some very hard thoughts. I can't imagine out lives without our second now, but that was not an easy time. It's not the same as what you're going through, but I think all parents at some point have these hard thoughts, whether they are willing to admit them or not. Keep on being real, God will see you through.

  4. Yes, your honesty is noble. My heart aches for you because no matter what I say I can't change the way you feel but I will tell you that I love Joaquin with every cell in my body and although I still have days of fear and worry, they are fewer and fewer. In fact, I think my fear and worry is changing into pride for Joaquin and a sense of excitement for the life that we will have in years to come. I pray and pray this day comes for you soon. Please take care of yourself and continue to reach out if you need it. You can ALWAYS call me, day or night, anytime. I mean it. I am in your shoes.
    Love and hugs,

  5. Danielle,

    I just wanted to introduce myself. Jen passed your blog along to me and I just want you to know, I have never actually come out and said it (or typed it) but please know you are not alone in thinking these thoughts.

    When Gabby was in the hospital and I was stuck at home sitting in her nursery pumping every two hours, still mourning the little girl I dreamt up in my mind, there were SEVERAL instances in which I thought it would make life for her and I so much easier if she were to die. I can HONESTLY tell you today that to even see those thoughts typed out here in this text box makes me cringe.

    It WILL get better. I cannot tell you when...I wish I could. Every parent grieves differently but I KNOW the day is coming in which you will not feel or even think this way anymore. It just takes time.

    Love, hugs, and prayers from one Ds mama to another.