Dear Nico,
A little late this month, it's been a bad week so I had to chose sleep over writing.
18 months is a milestone and it makes me sad to realise how old you are. I don't know how to express why without sounding negative and like I wish you were your sister but I will try. At 18 months your sister had experienced so much, she had been overseas half a dozen times, had holidays and her life was great. She was having playdates and running around like a crazy chicken, learning so much. We didn't know it at the time but she was about to have an amazing little man come into her life. You were supposed to be many more months away. I look at your day to day life and my heart breaks for you. Still so trapped, so frustrated. Watching life go by, understanding what is going on around you but not being able to participate the way I know you would want to. Not being able to give you the usual experiences a 1 1/2 year old has. It's just not fair.
You have your squiggle chair now, albeit with the wrong head support. It means you have a good supportive place to sit and we can push you around the house. It goes high to be at table level with us, or low to be at Brooklyn's play height. She loves to push you around and I think she is a bit envious of your cool chair. She loves her Mister Man and tries so hard to make you laugh or smile. You definately know what I am telling you when I say "Here comes your sister" or "Where is Brooklyn?!" and you get really excited. Lately your favourite game is to chase her around the house. I hold under your arms and you run after her. It makes all of us laugh and gives me warm fuzzies.
We continue to work on teaching you to control your arms/ hand/ feet. There have been some good signs, all dependent on your mood. Biala (Early Intervention) has a lot of "switch toys". They are your usual baby toys with music or movement but they have been adapted to have a giant switch, about the size of a large saucer/ small bread plate. The idea is to get you to hit the switch with your hand or stomp on it with your foot. You are good at it with your foot, stomping is a natural movement for you. On the right day, you are getting your arm/ hand to do it as well, if you are lying on your side and we support your shoulder to get you arm forward. I am such an emotional mess, I often cry when you get it right. Silly I know but it is such an encouragement to me that you will be able to amuse yourself at some point in the future and not just have to sit on the sidelines.
Today you got your Bard Button, which looks like this the top sits on your skin like a little lilo valve. It should make you more comfortable when sleeping since you insist on being on your tummy. The tube you had really annoyed you. It will also make it easier for us to dress and carry you. It was a quick op today and even though you were pretty miserable after coming out of general anaesthetic, by later in the afternoon you were back to normal.
You have been pretty unsettled the last 2 weeks, I think because of your molars. you have one giant one through now and the other 3 are all so close. You are back to hourly wake ups most nights but go back to sleep pretty quickly. I just wish I could do something to take all the pain away, teeth or otherwise. I feel so helpless and hopeless. I really do feel like the worst mother in the world when you are screaming... I want so much to fix it all but just have to walk away sometimes to avoid having a breakdown.
Pics to come.. sometime soon
Love every little piece of you, but most of all your giggle.
Mama
A little late this month, it's been a bad week so I had to chose sleep over writing.
18 months is a milestone and it makes me sad to realise how old you are. I don't know how to express why without sounding negative and like I wish you were your sister but I will try. At 18 months your sister had experienced so much, she had been overseas half a dozen times, had holidays and her life was great. She was having playdates and running around like a crazy chicken, learning so much. We didn't know it at the time but she was about to have an amazing little man come into her life. You were supposed to be many more months away. I look at your day to day life and my heart breaks for you. Still so trapped, so frustrated. Watching life go by, understanding what is going on around you but not being able to participate the way I know you would want to. Not being able to give you the usual experiences a 1 1/2 year old has. It's just not fair.
You have your squiggle chair now, albeit with the wrong head support. It means you have a good supportive place to sit and we can push you around the house. It goes high to be at table level with us, or low to be at Brooklyn's play height. She loves to push you around and I think she is a bit envious of your cool chair. She loves her Mister Man and tries so hard to make you laugh or smile. You definately know what I am telling you when I say "Here comes your sister" or "Where is Brooklyn?!" and you get really excited. Lately your favourite game is to chase her around the house. I hold under your arms and you run after her. It makes all of us laugh and gives me warm fuzzies.
We continue to work on teaching you to control your arms/ hand/ feet. There have been some good signs, all dependent on your mood. Biala (Early Intervention) has a lot of "switch toys". They are your usual baby toys with music or movement but they have been adapted to have a giant switch, about the size of a large saucer/ small bread plate. The idea is to get you to hit the switch with your hand or stomp on it with your foot. You are good at it with your foot, stomping is a natural movement for you. On the right day, you are getting your arm/ hand to do it as well, if you are lying on your side and we support your shoulder to get you arm forward. I am such an emotional mess, I often cry when you get it right. Silly I know but it is such an encouragement to me that you will be able to amuse yourself at some point in the future and not just have to sit on the sidelines.
Today you got your Bard Button, which looks like this the top sits on your skin like a little lilo valve. It should make you more comfortable when sleeping since you insist on being on your tummy. The tube you had really annoyed you. It will also make it easier for us to dress and carry you. It was a quick op today and even though you were pretty miserable after coming out of general anaesthetic, by later in the afternoon you were back to normal.
You have been pretty unsettled the last 2 weeks, I think because of your molars. you have one giant one through now and the other 3 are all so close. You are back to hourly wake ups most nights but go back to sleep pretty quickly. I just wish I could do something to take all the pain away, teeth or otherwise. I feel so helpless and hopeless. I really do feel like the worst mother in the world when you are screaming... I want so much to fix it all but just have to walk away sometimes to avoid having a breakdown.
Pics to come.. sometime soon
Love every little piece of you, but most of all your giggle.
Mama
awww Karin. I wish I could see you and Nico more often. He went from a baby to a little man so quickly it seemed, but I know it has been a long road for you. I cry when my kids do stuff too. It's a mum thing. *hugs*
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This was so lovely to read. I can hear your love and your pain xxx
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