Wednesday, August 25, 2010

New Parents should read this

I have been doing a lot of thinking since our local DS support group meeting last Wednesday night.  You see, this meeting had a very small turn out of only 6 families total, and yet 2 of those were new families.  And I mean NEW!  One husband and wife have a 4 week old little girl (saw a photo and she is just precious!) and another gal was there with her 3 week old little boy.  I was lucky enough to actually hold this little boy and my goodness did it feel like forever since Sweet Pea was that size!  He was so sweet and just slept so peacefully in my arms.  Anyway, back to the point...having these new families there caused the conversation to be very different than in recent meetings when we haven't had new families.  We were there to answer any and all questions that these new families had and they had a lot of great questions.  Sitting there talking with them it started to dawn on me...that was me 15 months ago when I attended my first meeting!  I was the one super nervous about what were therapies like, what was the future going to be like for our children, how did we speak about it, etc.  Now I was actually the one helping them know that everything was going to be okay.

I have often felt that on the road to total acceptance I am probably at 70% or 80%.  I have felt that I've been stuck at that spot for the past 9 months.  Wednesday night made me realize that either I wasn't at 70% 9 months ago yet or I'm now at 90%!  It was amazing to be able to honestly tell these new families that everything really would be okay.  One gal was funny and shared that when she tells people about her son they try to immediately tell her that it will be okay.  She says, "yes, it will, but it still SUCKS".  It made me laugh because I felt the same way that she does in that I knew deep down that it would eventually be okay, but having a child born with a disability does suck in that it wasn't what you were anticipating and didn't fit the picture of the perfect child in your head.  However, today I don't feel the same level of suckiness (new word) when I think about Sweet Pea's diagnosis.  I still wish that she didn't have DS because it would make her life a lot easier (and heck, ours too), but I know that she wouldn't be the same adorable little girl if she didn't.  I do believe that the extra chromosome had a major impact on her personality and not just her cognitive and physical attributes.  She probably would have been adorable in her own right if she were typical, but she would definitely be different and this particular little girl has stolen my heart completely.   I remember not feeling very connected to her for many, many months.  I worried that I never would feel for her as I expected to feel for a daughter.  I don't know when it happened, but that has definitely changed and I couldn't be happier about it!  She certainly deserves a mommy fully in love with her and heck, I deserve to have a daughter that I love so much that I would do anything for.

Here is a very sad secret that I will share...there were many times in those early weeks and months that I actually wished that she had some serious illness that would take her from us!  Now just thinking that thought makes tears stream down my face (I need a waterproof keyboard), but I did have those thoughts at times.  Just having those thoughts made me feel like the worst mother ever, but I couldn't change that I had them and I just tried to be honest with myself about them.  Now I would fight to my death to keep her from anything that might take her from us!  Back then I hoped that this day would come, but I honestly had no idea if it would.  I am so elated to be able to share that I felt that way because there is no way that I would have shared that if I felt that way at all anymore.

16 months and I'm still not 100% there, but wow, I'm still making good progress!  It took these new parents to be so open to sharing their fears and concerns for me to realize that I am not there anymore.

To any new parent that might be reading this, have faith that it really will get better and easier.
  • Give yourself time to adjust to the diagnosis and how it will impact your life.  It will impact your life, there is no way around it!  But it isn't a fraction as bad as I imagined initially.  
  • Give yourself time to grief the loss of the child that you thought you were going to have.  I am sure there are some people out there that have always hoped that they would have a child with DS because they knew someone very dear to them with DS, but I certainly didn't and I had 31 years of picturing my children in my head and Sweet Pea is not what I pictured even once.  To grieve that loss is natural and actually healing.  Here is a great article that I posted in a prior post:
  • Get involved with a local DS support group or make virtual friends with a DS mommy via blogland.  Blogs have provided me an amazing glimpse into others homes and I believe played a huge role in my progress.  Through blogs you can see older children with DS doing many of the things that I feared my daughter would never be able to do.  Through blogs you can meet other kids around your child's age and see how they handle issues and share successes.  However, be careful that you don't read blogs of children with severe medical issues early on.  Even typical kids can have serious health issues, but you don't need to be fighting more battles emotionally and I know with me, if I read about someone else's problems, I spend time worrying about them.  Stick to the healthier blogs at least until you get your feet under you.
  • Give yourself the space to feel negative thoughts.  Maybe journal or share them with a very close friend.  This blog was my attempt at getting feelings off my chest and the funny thing is, I think I started to feel better about Sweet Pea when I started this blog.  It gave me a forum to share all that I do love about her.  I started looking for positive things to share with family and friends and those new friends from blogland.  A blog isn't for everyone, but even a weekly letter to a distant relative might give you the same push that this did for me.  But allow yourself to feel the wide variety of feelings that you might be feeling.
  • If you already feel pretty good or even better, congratulate yourself!  Don't worry if you feel like you fall backwards a bit at times because it is very normal.
  • Congratulations on your new baby!!!!!  I couldn't hear those words without cringing for a long time, but you deserve congratulations because your baby truly is a very special baby and you will love him/her with all your heart soon enough.


  1. Thank you so much for wonderful that you were able to offer a glimmer of hope to these new families and you know what...I had that same thought early on that I wished Emily had a serious illness that would take her away...and now I am praying fervently against leukemia or anything else that might come up. You know what I realized, it makes me feel a little better about that that I was more than likely still so afraid of the DS that I just wanted it to go away. I haven't told many people that I felt that way...thank you for sharing it here, I don't feel so alone in my early feelings!

  2. What a beautiful honest post. I hope to make one of those Wed. meetings soon. I am sure those two families left feeling so encouraged by you guys, those first few months are so hard emotionally....yet is feels SO GOOD when you realize how far your heart and head have come and you couldn't imagine your life without your little one....for me, when I finally came to that place I felt so much freedom from the inner turmoil and fear and just finally started to enjoy my beautiful little guy. Sweet Pea's glasses, we have ones very similar on order in blue :)

  3. I so appreciate your honesty. I had similar thoughts about my own son after we found about his diagnosis when I was 19 weeks pregnant. I was just so terrified about the future. When I think back to that time, I cry so many tears of regret. I only wish that I had known then what I know now. I wish that I could have seen my beautiful boy then & known how much joy he would bring into our lives. No, raising a child with DS isn't easy. And yes, I wish that my son didn't have to work so hard for the things that seem to come easier for other kids. But the truth is that I could never love another child more. I can honestly say that I feel blessed to be his mom & the only true regret that I have is ever having had an amniocentesis in the first place.

  4. OK now I need a tissue. I know it was not the dream you always pictured but we love you and we love her and think that God put her here for a very special reason. We can't wait to see you again!