Tuesday, August 18, 2009


I've been sad lately...really sad. I'm beginning to wonder if I'm experiencing some post-partum depression, but when I look at the "checklist", I don't meet the criteria for the run of the mill ppd. So, am I just experiencing the expected sadness anyone has with the loss of a dream? Is this normal?

It seems to me that so often, other moms with children with DS are so positive. They don't seem to have the kind of sadness I have. They seem to have found the joy in their child. I am still looking for it...Yes, I know there are a lot of things that could be worse, but this is my reality and it's one I never, ever expected to be living.

Nate still can't hear me, so even talking to him doesn't make a difference - I get no response. The only time I get a response is when I make funny faces or give him a bunch of kisses on his neck. We've finally been fitted for hearing aids, so he'll have those soon. But even the thought of hearing aids is overwhelming to me. Take them out every time he goes to sleep or takes a shower/bath. Change the battery every 10 days. And then there's the concern of if they'll even stay on his tiny ears. Oh, and the audiologist said to expect to visit the ENT often to have Nate's already impossible ear canals cleaned out (nobody has been able to even see in his left ear yet!) - it turns out putting plugs (hearing aids) in small canals that tend to accumulate buildup anyway is not a good idea, but that's the choice - ear infections and cleanings OR very limited hearing.

He is almost 8 months old and his activity is still so limited. I feel like I spend the day moving him from one place to another to try to continue to stimulate him - he just gets bored since he can't sit up or move around on his own. And I can't use the items that were good for Cody - they aren't good for Nate's development. So, no jumpers, walkers - anything that spreads his legs apart or promotes an activity that he is not ready to do on his own. So, that limits the options.

And then there are the napping issues. Nate is a champion sleeper at night, but daytime is a different story altogether. He may take a 30 minute nap in the morning if I'm lucky, but then will go the rest of the day without sleeping. So, he is a complete pill the entire afternoon - fussing and crying and only happy if I hold him. At that point in the day, the last thing I want to do is hold him. My mom keeps encouraging me to figure this one out - I didn't realize how much it was really affecting me. Thanks Mom.

Okay, that's my rant for the day. I'm having a tough time.

To my friends who have called or emailed, I'm sorry I've been distant. To my dear sweet husband whose been incredibly loving - I'll find my way back to happy.

Please be patient with me.



  1. Danielle, you make my heart ache for you! I am sitting here with tears in my eyes, sad that you are sad, and wishing that I had some bit of wisdom for you that would make this fog lift. I guess the only thing I can say is what I know for certain: Nate is so lucky to have you for his Momma. God knew that Nate needed a fighter, so God gave him to you. But every warrior grows weary of the battle. I hope you are able to have a good cry, recharge your batteries, and continue the fight when you are ready. In the meantime, sending you big hugs.
    PS I worked with a sleep coach who was wonderful. She is a nurse, so I think she has more of a medical approach than some, perhaps. Free 30 minute consultation, check it out: www.rubyskycoaching.com

  2. Hang in there Danielle and hugs to you. I would talk with your doctor and see what they think about the PPD. Sometimes the checklist isn't designed for parents who are given difficult news about their child on top of the normal topsy turvy hormones of just having a baby. It never hurts to at least talk to a professional about it.
    I'm currently reading Kathyrn Soper's memoir and it's really good. Have you read it? I think she had some PPD on top of the normal fears of receiving a difficult diagnosis but I'm not there yet in the book.
    Email or call me if you need anything, even just to vent or cry.

  3. Danielle... these are the toughest days of babyhood. At 8 months old there isn't much else to do but move Nate around from place to place offering different stimulation... My daughter was the same way and I felt guilty about it for a while but realized I was doing the best for her I could.

    Why no jumper? At 8 mos he could sit in the jumper and bounce himself. Anyway, I used to start out with her in the kitchen swing, then move to the playgym in the livingroom, then the LR swing in front of the tv with a Baby E video, then the jumperoo, then the floor with the boppy and toys, then back to the kitchen swing while I cooked dinner. In between there was highchair time, physical therapy time, and "naptime".

    You very well may have PPD or maybe chronic sorrow, http://leejagers.wordpress.com/2006/04/26/chronic-sorrow/. Either way you can get some help for that. It won't last forever but it is so hard to go through.

    In the afternoons when he is so fussy he may be overstimulated and looking for you to calm him. You could try putting him in a quiet place by himself with just a mellow toy to keep him company. He may fuss himself to sleep. I found out that is what my mom was doing with my daughter while I was at work a couple day a week. I hadn't done it because she cried and I don't usually let me babies cry it out but my mom said, "Oh she always does that while she fusses herself to sleep" and sure enough she was right. She was not screaming crying though, so if Nate screams I wouldn't make him stay there for more than five minutes (but that's just me.)

    Please email me if you want to chat more about this stuff. xxoo

  4. Hi Danielle - I struggled with PPD after Joanna was born. It was a tough year. I would definitely talk to your doctor about it, just to be safe. It can kind of creep up on you. If at any time you want to talk with me about my experience with PPD, I would be available.

    We are praying for you. - Amanda

  5. I'm sorry you're hurting. I second the recommendation to read "The Year My Son and I Were Born" if you haven't already. It is a very, very honest account of her feelings, many of which are similar to the ones you're describing. Also- she talks a lot about frustrations with hearing aids. You're not alone.

  6. Hi Danielle, I just saw your post from last week and it seemed like things were getter better for you. I'm glad that you're being honest with your feelings and reaching out. I agree w/ the previous comment that Kathryn Soper's book The Year my Son and I were Born could be helpful. I want to recommend that you seek help, whether it's PPD or some other form of the depression. There's no shame in seeking help -- only healing. Also, I recently "met" a couple who are both therapists for couples who have a child w/ special needs. Their son, John Michael, is 15 years old and they live in So. Cal. Check out their website:
    Ross Porter, Ph.D.
    Founder/Executive Director
    Stillpoint Family Resources
    (Office) 818-704-1327

    Dr. Porter may have some great suggestions for you since he and his wife have experience with a child with Ds.

    Nate's a beautiful boy. Perhaps in the afternoons you can put his head against your chest and sing to him so he can feel your vibrations. I know it's hard when they don't sit up yet, but it won't be long. By the end of this year, I know you'll look back at all the things he will be doing and be amazed. The toughest thing is looking at our children day to day and not seeing a lot of progress, but over time, it all adds up. Hang in there. Email me privately if you'd like to chat on the phone sometime. {{HUGS}}

  7. Hi Danielle,
    My name is Jenni and I'm the mother of 4 in the LA area. Monica Crumley suggested your blog to me and my husband, Ross (see above post).

    My oldest, age 15, has DS. Ross and I wrote a book about parenting our oldest child John Michael called "Hidden Graces"... it's sometimes a difficulty to see everything with your special child as a grace, but it will come to you with time, and after potty training, seriously, he's my easiest-going child, the one with whom we have the most fun and the least conflict! (then again, we have a 13 year old and a pre-teen... full of angst!)

    You are not alone in experiencing melancholy about having a child who is different, who takes different parenting, whose path is not typical. Are you a part of your local Down Syndrome Association? have you met with a peer counselor there? Have you met with other parents? Do you have a faith community you could go to for help?

    I ask these questions b/c I had to "find my way back" also; I was torn b/t the utmost love for my firstborn child and hurt about thoughtless comments from people, whispered comments that I couldn't help but hear that hurt so very much. The best thing a stranger said to me when John was small was, "He has DS? I couldn't tell; this child will go far and teach so many about his differences." Huge words to me! My communities of the Down Syndrome association of LA and my church were of especial importance to me during John John's difficult first couple of years.

    Also, we met with friends and acquaintances who told us how to best meet our John John's developmental needs: friends who are Occupational Therapists about how to better treat his low muscle tone, a specialist out of the Regional Center (here in CA it's where we find many state-run programs for our son) who set up 3 different ways to stimulate his development for me, visiting me at home; etc etc. Since you're a blogger I'm assuming you've come across these kinds of friends, but keep seeking them out! There's wisdom in the saying "Fake it 'til you make it...". And congrats on the hearing aids... I'm really praying for you that it makes a difference in how you relate to your sweet boy.

    God bless you as you navigate this difficult path of love v. expectations. I found it surprising how quickly my other children developed after I had them in comparison with John John; you already knew "what to expect", since you had your special baby after your typical baby, and perhaps that's what makes it harder. Just know I'm rooting for you and welcome an email if you'd like to talk (just like Monica, who I'd also like to talk with on the phone... we could form our own Small Group!... ;-)

    Let me know if you'd like to talk.

    Jenni Porter

  8. It takes time...it really does. I was in such a dark place after Brennan was born. I cried ALOT and honestly thought I would feel sad every day of my life. Then one day, I stopped crying and had a bright outlook on my future and Brennan's. It really just happened one day. Like Bob, my husband was amazing. It took him about 3 minutes to get to a place of complete acceptance of Brennan's diagnosis. And obviously it took me longer. We all get their at our own pace.

    As for jumpers or exersaucers - we've used both. Do what you need to do!

  9. Dani - thanks for always posting your true feelings. It is truly a peak into your heart and gives all of us a sense of what you are going through and how to support and pray for you. I will continue to pray for you and Nate's connection; i have been specifically praying for you in this area; i know God will be faithful to give you enough to get through each day. I love you guys so much and ache with you....

  10. The Ferraras will hold you in our thoughts and prayers. xxoo

  11. Sweet Danielle, I read this post late last night and have been thinking about you all day long. I am aching for you and have deep respect for your transparency and honesty. I am touched by the comments you have received. Know that you are prayed for and are loved from afar.

  12. Just wanted to send big hugs and thank you for your honesty. Kayla's five and I still have twinges of sadness sometimes.