Sunday, December 20, 2009

All I want for Christmas...

I need a friend. I could not imagine my life without my blogging friends who share this journey with me. Truly, they are a gift from God. But, I would very much like to have a real-life, flesh-and-blood, local friend to ride this ride with. I long for playdates, therapist comparisons, and a familiar face at those awkward Down Syndrome Association parties. I am so blessed to be part of the Ds community, and yet, I'm feeling kind of excluded from my real world.

Part of me is struggling a bit with Down syndrome right now. Eon will be a year-old next month and for a year, I have been almost consumed with all things Ds. It has been a necessary immersion. I have become an expert in order to best advocate for my son and to meet his needs. I don't know if my melancholy mood is because I feel the interest and support's been a year; get over it already. Friends are moving on. But, I never will. This is forever and I am feeling small.

Maybe it's because Eon's delays are starting to become more noticeable and I can't slide under the radar anymore. I don't compare him, but I feel like others do. Maybe it's because the finality of it all is finally penetrating my thick skull.

The conflicting feelings of this year have been, because he's so incredible and sweet and hilarious; sadness, because of what might have been; fear for his health and well-being; contentment to be part of the club; anger over the senseless slaughter of so many of his peers; and certainty, because he is exactly who he was created to be.

Yesterday, I almost lost it when I heard "Joseph's Song" on the radio. "Why me?" is a feeling I identify with at times. I sometimes want to ask God, "What were you thinking? Why would you think that I can give this child what he needs? Why did you decide to choose me for the task?"

And, sometimes, I feel blessed beyond measure and unworthy of such a gift.


  1. Hey there. My Luke is fast closing in on 2, and I have been trying sooooo hard not to compare him to what my others were doing at the same age. Silly huh? I just need to appreciate what he CAN do, because he can do a lot. But trust me, in another year's time, things will be a lot easier for you than they are now, and the sad times few and further between. Like you I don't think I will ever 'get over' this, and I think about DS all the time and am totally sick of it. But all I really need to do is love my baby, and the rest will come.

    Be kind to yourself, and try to forget about therapy and DS for the holidays :)

    He is VERY cute by the way


  2. Tara, I understand where you are coming from, to a degree and feel much the same way. Sometimes I wish Kels had a diagnosis so I could find that community to belong to or at least stop researching EVERY possible diagnosis the docs throw out there. We're always up for playdates, therapist chat, or simply marveling at the simple things are children do that are so normal in other children. **Hugs to you!**

  3. I'm feeling extremely melancholy lately also. My Yusef is having so many problems with seizures and is still at a 3 month level. I notice the sideways glances more and more. I know how you feel. Life is happening and some of the exhuberance of having our sweet newborns is over. This is just a bump in the road, I think. I hope. Much love and prayers to you and your family.

  4. I totally understand as Wysdom just turned one a couple of months ago. We are your friends here to support you. Wysdom has a lot of delay's right now including feeding and gross motor which are at the top of my list. I just try to focus on the love he gives me and not get overwhelmed by all he still has to do. Maybe I am still in denial a bit or just have a different focus on his medical stuff. However I sure do "why me" for a lot of other things like finances and family illness. Oh sure I feel a pinch of sadness and grief maybe when someone has a healthy baby or is pregnant..but I just have to move on. Hang in there. PS. Your comment on my blog so brought me to tears. My mom is very ill right now and it's so hard. So I am just going day by day. I really don't know where to start with the whole aspect of God as I haven't gone to church in over 20 years but I am trying.:)Sorry for the long babble.

  5. I think it was when Nichole was 1 that people would start to ask, "Is she walking yet?" She wasn't even crawling yet, as a matter of fact, she could not even get herself to a sitting position on her own (from her belly)
    Now that she is 2, kids that re younger can do much more.
    Some days I have to fight back the "jealousy" but regardless of that, I would not have her any other way.
    I understand how you feel. Hugs.

  6. Tara,
    SO sorry for your melancholy. I dont know what you are going through. But I do understand the need to have a dear friend to "do this" with. I will pray for you. That until you do God will be close to you and He will be the comfort we cannot find in others. E-mail me.

  7. Oh, Tara - I feel like being a mother to a child with Ds is a rollercoaster - with many ups and downs. Sometimes emotions surface's all part of the journey. But, like you said, look at your sweet Eon and know that he is who he was meant to be and you, most certainly, were meant to be his Mom!

  8. I'm so glad to finally have your blog!!! I couldn't make your picture give me a way to connect with I'm finally glad to be able to do so!!

    Please write whenever you need a shoulder. I totally understand how you feel. Email me can talk. I would love the company!!!

  9. Are you in the South? Because I am totally with you on needing someone in my physical world to do playdates with and just go through the experience with--but so far I haven't found anyone remotely close to me that has a young child with Ds. Even with my other friends and the online Ds's still lonely not to be able to talk to someone IN PERSON about everything that comes with Ds.

    Hugs to you--and I'll pray that you'll find a friend that can help you not feel so overwhelmed.

  10. I enjoy this post and your honesty. I am a few weeks away from my due date and would also like someone to walk this path with. I mentioned to my pediatrician that I would be willing to meet other prego moms with a DS diagnosis in the practice, but he came up empty with anyone... probably because of what you said...senseless slaughtering of fellow babies... this new year I too am praying and holding on to hope for that one lady in my area who chose God's will and I can connect too will want to meet... my journey is just beginning ... I enjoy your blog and your faith. thank you