Does she even know…

6 Nov

Does she even know who I am anymore?

What does she see? What does she think about?

How much more will we lose?

We will lose her completely. But on days like today it feels like we have lost her already. She is unsettled. I try to comfort. She does not look at me. She does not let me comfort her. Her body flails. She tries, tries, tries to lift her head. She squeaks. She  is frustrated. I am frustrated. How can I help her?


For a while.

But even Dora doesn’t work her magic all the time. Maisy. Harold. Charlie and Lola. Attempts to cuddle. Rejection. My tears. This is when she laughs.

For some reason, she finds me crying very, very funny. This is good. I like her laughter but today although I smile through the tears, the tears keep on coming because the connection is not being made. What is sad? I guess I am glad she doesn’t know. It is my sadness not hers.

I get on with the day.

Dora is currently working. There is quiet. My tears have helped.

Very Special Kids

Over the weekend, we used the respite services of Very Special Kids for the very first time. I was able to stay in the parent accommodation right next door and we were in with our lovely friends Nicole and Jack.

It is a very surreal thing to do,  hand your medically fragile child over to strangers and let them take charge. Let them do the medications, the feeds, the overnight position changing, the entertaining, the everything. All Nicole and I had to do was go out for meals, see a movie, sleep in and shop! Of course, it wasn’t that simple – I found it pretty hard to let go. Will they understand her squeaks and squawks?  There was a lot of paperwork to fill in before we got admitted and they are incredible about updating her file with her likes and dislikes so that subsequent visits are even more tailored. I am so grateful that it is available to us and certainly the care that Tilda was received was fantastic. She was happy and cheery. Especially in the “princess chair” which looked amazingly comfortable, I have begun my search to find one for home.

It was, all in all, a positive experience. We are booked in for some more time in January for when the baby is here and Tilda is on school holidays and I have no doubt that we will make even more use of it over the next year.

We have another pediatrician appointment on Thursday – I will be really interested to see whether our increase to 500ml a day has assisted in her weight gain. Also on Thursday, we have a growth scan for the baby and I will be really interested in that one to see whether or not my wish for a 12/12/12 delivery is likely! I will report back!

Dora and a change of position have done the trick. For now. The lack of connection continues but I put it aside and enjoy the smiles.



9 Responses to “Does she even know…”

  1. Ruth Magree November 6, 2012 at 5:29 pm #

    How lovely you got to have some girlfriend time! I’m glad Tilda had fun at the respite centre. Sorry to hear she is having a rough day today. Much love as always xx me 🙂

  2. cally berryman November 6, 2012 at 5:31 pm #

    What can I say except that we are on the journey with you and witness to your pain?
    And joy.
    And very glad the respite is working out.
    I hope all goes well on Thursday. xxxx

  3. Fiona November 6, 2012 at 5:54 pm #

    Sending you so much love always. xoxox

  4. Daryl November 7, 2012 at 10:01 am #

    So, so tough Laura. Your pain and sadness are palpable …….we hear it , we feel it , we share it…. if only we could do more to ease it. I hope today is a better day for you and that both appointments on Thursday bring positive news .

    Tilda looks truly content and beautiful in the Princess Chair…….thinking of you especially on the most difficult days……. love Daryl

  5. Juliet November 7, 2012 at 12:21 pm #

    What can any of us say except that our hearts bleed for all three of you and we all admire your courage. And thank goodness for the respite care and princess chair. Good luck on Thursday! All my love

  6. Didi November 10, 2012 at 11:17 am #

    Oh my dear Laura you are courageous but I know it is hard for you my heart aches for you and Simon. Sending you guys much love and loving thoughts. I’m glad you had some you time though and that Tilda liked the respite center. My prayers are with you all. Just one day at a time that’s all you could do, wish I could be there and help you like in the old days. My hugs and kisses always my dear friend.

  7. Anne Bunting November 11, 2012 at 2:10 pm #

    The pain of not knowing whether Tilda knows you or not must be devastating but somehow you find the strength to keep on day by day. I am so pleased both you and Tilda had some some respite – she certainly looks happy and at eave in the princess chair.
    Love always

  8. Jan and Dave Marshall November 15, 2012 at 8:35 am #

    Wonderful to know there are such organisations as Very Special Kids – how great to have a little time out. We think of you a lot and marvel at the way you are coping. Good luck

  9. Isabella Godbert November 16, 2012 at 4:41 pm #

    Love to you all it is wonderful that you have the respite care for some holiday time especially with the new baby

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