Kevin wanted to go to the hospital with me and see his baby brother. On the way there, we talked about how Finn was going to look, with all the stuff attached to him. I wanted Kevin to be prepared for the fact that he wasn’t going to look like a "normal" baby. We have not even yet mentioned to him the possibility of Down Syndrome. How do you tell a child about something like that? Kevin is upset enough about the fact that his newborn brother suddenly disappeared from home and had to have an operation.
He was happy to see Finn, although I do think all the monitors and tubes and stuff intimidated him a bit. He stood next to Finn’s "bed" (really just a raised platform tilted at a slight angle) and stroked his head for a while. Finn remained very peaceful. A little while later I got to hold him "kangaroo" style again for about an hour.
A social worker came and asked Kevin if he wanted to go upstairs to the gameroom. They take kids up there to talk to them, see if they can get them to open up about their feelings about what’s going on, etc. I don’t think they had much luck with Kevin - he’s pretty closed with his emotions with strangers.
When I put Finn down, the nurse changed his dressing and his diaper, and he woke up and it was the most alert I’ve seen him. He fussed a bit, but mostly looked around and waved his little hands and feet around. The nurse got him wrapped up snug again and he went right back to sleep, and Kevin and I left shortly after that.
***
Michael had an appointment for physical therapy this afternoon because his back has been bothering him for weeks. Afterwards we had our first fight since the baby was born (actually, the first fight in quite a while). I told him it must be nice to have the luxury of being able to take care of himself when I, who just had a baby 3 freaking days ago, don’t get the opportunity to take care of myself. Well, that set him off. I guess a fight was bound to happen. There’s so much stress in our house, and everyone is being affected.
But seriously. I’m 3 days postpartum. I’m supposed to be resting, bonding with my baby, and enjoying my babymoon. Instead I’ve had to go back to "normal" immediately, because there’s just no choice. I’m tired, I’m sore, I’m weak, I’m bleeding, I cry all the time, I’m trying to make milk for my baby, and I just have to keep going.
***
The geneticist called this afternoon and said that the genetic workup has confirmed that Finnian has Down Syndrome. I have no words. I knew in my heart that that’s what we would hear, but I held out the tiniest glimmer of hope that we would hear something different. I will allow myself some time to grieve and rage - I am entitled to that. This is not what I signed up for. This is not the life I saw for my precious baby. It’s not fair, goddamnit.
5 comments:
I remember the glimmer of hope and the rage. You are entitled to those feelings, completely separate from the love you feel from Finn. It's not fair. So many things in life aren't. And you are allowed to grieve the life you thought your child would have.
And I think it's ok not to give a huge explanation to the kids about Down Syndrome...especially when you don't know what it will mean for Finn. It's ok for them just to love their little brother. Kids don't pay as much attention to milestones as adults...the timelines for such accomplishments really mean much less for them. It may take him a little longer to do things (or not!), but he will accomplish them.
(((hugs)))
I paid you a visit earlier this week but your sister-in-law told us you were at the hospital. I haven't called thereafter knowing that your energy is with your baby. So don't even worry about sending thank yous, the formalities don't matter here however this blog is perfect to keep us informed.
I try to think how Mike and I would be in your case, but we do not know unless we are really experiencing ourselves. As I was pregnant with Emily, I had all the tests done including conversations with the geneticist because Emily had Choroidal Plexus Cysts in her brain and could be down syndrome. She was born with two heart murmurs and what we go through today is her weak immune system and that is why she has a tough time fighting off her eczema which has spread to her face. God gives us what we can handle and as Monica H. put it, you will be a strong advocate for Finnian. I admire you and Michael for your strength; yes you are exhausted, but you are still there for your children. Finnian will be a light for your family. Majority of Down Syndrome babies are always happy and positive--he will be your light on those stressful days. You will be amazed how kind and respectful he will be compared to many disrespectful children around here that are not. He is a beautiful baby!
Remember, we will watch your kids if you and Michael want to be together at the hospital. I am so happy he is pooping too. You are on our thoughts and prayers.
Marcy
This is one huge journey, and it is understandable that you would have frustrations and concerns. I hope that you can get some rest in it all. It is even harder to cope while you yourself are healing and tired. HUGS and Thoughts to you and yours through these trying times.
BTW - He is such a beautiful little guy! You really will be the best mother for him.
physical therapy sucks for back problems. SERIOUSLY! SUCKS! I can hook him up with the chiropractor that cured my back in ONE visit. he's in long beach. and I'm a major skeptic. get some rest lisa!
YAY FOR POOP!
and even more YAY's for the heart!
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