Support

One of the gifts that Miss B has already given me is a new appreciation for the value of social support.   In an emailed announcement, we invited almost everyone we know to join us in celebrating her birth and told them about her Down syndrome diagnosis.  I was not prepared for the kindness we would receive.  We didn’t cook for ourselves for almost five weeks.  Colleagues, neighbors, and people we hardly know sent cards, gifts, cd’s and flowers.  Crafty friends knitted sweaters and booties, foody friends fedexed homemade bread and cookies.  Family members lined up to visit and help.   I was often moved to tears (Ok, as I’ve acknowledged, it doesn’t take much.  Damn hormones.) by the welcoming tenderness everyone showed toward Miss B, by the personalized gifts, by the way our visitors would hold her and coo.  It was extraordinary.  It filled me with a strange mix of gratitude for the support as well as regret for past times when I could have offered such support to others but didn’t because I feared being too intrusive.  Now I get it.

Of course that can’t last forever, and nor should it.  In fact, it would have become oppressive had it lasted much longer.   But as the outpouring got all poured out, I started to feel lonely.  I know other new moms that I can talk with, but this situation is so emotionally complicated that I’m not sure I can really connect with them.  So I did what so many others have done – I went to the internet.  I started blogging and I posted on the http://trisomy21online.com/ forum.  I’m not sure where all of this will take me, but I’m grateful for the option. 

In response to my introductory posting at the discussion forum, Jan of http://mauzysmusings.blogspot.com wrote, “Change your log on name...why? Because within a few months or so you will no longer feel like a ‘trisomy mom’ but as a new mommy with a baby that happens to have tri21!”   Jan, thanks for that.  I know you must be right, but it’s hard to imagine.  My previous identity has all but disappeared and Miss B’s identity is still so unformed that Trisomymommy captures all I am right now.  I have no foresight.  Of course this state isn’t permanent, but it feels that way right now.  And it’s not that I’m constantly despairing.  In fact I feel reasonably upbeat most of the time, but my mood is fragile. 

So… when will she start smiling?  I could really use a smile here.

Comments

[Michelle]

It really does get easier and that identity will fade as she becomes her own little person. I remember for the first weeks, heck months even it seemed, all I saw and thought about was Ds, Ds, Ds! I was now a mother of a daughter with Ds. But gradually I finally became just a first time mom with a beautiful little girl - who is now a blossoming toddler! You will get there too. I think Kayla started smiling around 8 or 9 weeks, but I would have to go back to the baby book to check. When you see that first smile it will totally melt your heart!

[Rebecca P.]

In the beginning there were times when I looked at Miss E and all I could think about is DS, other times I didn't even see it. There are going to be difficult days in the beginning, but over time you will find (just as Michelle said) these feelings will frequent your mind much less often.

I found great support in Tara Marie's Emma Sage in the beginning because she was as typical as any child I knew. I became quite addicted to looking at her daily adventures-and this beautiful amazing little girl provided hope when I sometimes had none. Soon, I found that, so many others were experiencing the so many of the same things I was-comfort in numbers-from people I had never met. It was wonderful.

This is why I spend so much time trying to provide all that I can in the way of world of T21 on my blog. I want others, who made need a bit of hope, to see just how well so many families with children with T21 are doing. Sometimes, no often times, these posts include the reality of different challenges the family faces as a result of health concerns, educational concerns, or just the emotional piece of being a parent of a child with T21. There are just so many families of all different locations, backgrounds, and lifestyles to choose from. I am sure there will be a few you can connect with.

If you find the time to read, I suggest you read all that you can, it is the most amazing therapy and free! Please feel free to email me any time you have a question, comment, or concern. My email link is on the end of my sidebar on the left of my blog. I may not have the answers, but I just might know of someone going through a similar situation.

You are still a new mommy in Holland, give it some time, I promise you things will get better. You will soon be your child's greatest advocate, with an amazing ability to tout off all of the health and educational jargon you will likely be exposed to.

You will find that your little Miss B, is the greatest gift you have ever recieved, and she will teach you the true meaning of life. I know that may sound a little far fetched from where you are sitting now-but give it six months and your whole perspective will change.

Just try to take some time to enjoy your baby for who she is, don't let the diagnosis prevent you from enjoying that sweet baby smell, those long cuddles on your shoulder, all the things one would enjoy with a newborn. You may be a trisomymommy (of which I think is completely ok for a blog title) now, but soon you will blossom into Miss B's mommy-and the days of feeling uncertain will pale in comparison to the joy you feel being her mom.

Ok, so sorry for the very longwinded comment, it could have been a post on my blog :)