Parents, carers and disabled parents
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The worst has been confirmed

HextalHextal Member Posts: 9
Unfortunately, on top of her CP we have just had it confirmed that Mathilde (our 7 month old daughter) has type 1 Spinal Muscular Atrophy. This means that (based on the average for her condition) she will likely not survive to see her 1st birthday.

Struggling to know how to deal with this if i'm honest.

Every time she smiles at me I break down in tears. I guess it's good that she is such a happy little thing and unaware of what is to come, but can't help feeling that she's been dealt a real bad hand. The really gutting thing is that she has managed to shrug off so much so far, being born dead for 10 mins, infections, seizures, being in ICU for her 1st month. It seems, no matter what she pushes through, there's something bigger lined up to stop her.

No idea how i'm going to cope when she goes, I have feeling not well.

Replies

  • mafalamafala Member Posts: 72 Listener
    I'm so sorry to hear about Mathilde. I pray that you will find the strength to enjoy the present moment with her and savour every single smile she gives you. I hope all the minutes you have together will feel like a lifetime. Hugs and kind thoughts.
  • renacahillrenacahill Member Posts: 145
    Sometimes life doesnt just feel unfair it IS unfair. I feel so sad for you and your family receiving such terrible news. Having a child with CP is a constant worry about their future and the hurdles they face and it does make us ultimately stronger. The future for you all is going to be so hard to bear, I cannot imagine how anyone survives the loss of a child you have come to love so much. Make as many good memories as you can, Mathilde wont understand what is happening to her so she will be protected, I just hope you will find the strength from somewhere to cope.
    xxx
    Kate
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