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SMA 1 |
| My 2 month old son was just diagnosed with SMA 1 this past Monday. My emotions have been running rampid. I keep telling myself I have to remain positive and try to do what I can to fight this. I am just not ready to give him up. While I try to stay positive, inside I feel like I'm mentally and emotionally falling apart. Will it get better and what can I do to help myself to stay strong? I have a 3 year old daughter and a husband to consider and I don't want to drive them away. |
| Posted: Fri Aug 22, 2003 2:50 am |
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Re: SMA 1 |
Hello Nikki
My name is Emma, I live in Brighton and my first son Archie was born in December 2001 and left us last May aged 5 months. Archie had type one SMA and was diagnosed when he was about the same age as your son.
I remember only too well our journey through SMA and particularly the time just before and after diagnosis. No one can lie to you it is hard; I imagine for all of you. I remember feeling such a breadth of emotions that it is hard to pull each one out and identify it. I remember that the feeling of isolation I felt as Archie's mother was perhaps the most overwhelming even though I recognised the impact that it had on my partner as his father, my step-daughter as his sister and so on. I also remember the despair that an understanding of type one brings and how unfair it is that we as mums have to face this reality when we are still celebrating this new person coming into our lives.
You ask what you can do to keep yourself strong; all I can say to you Nikki is that you will. For me the one thing that gave me the strength to carry on was the overwhelming love I felt for my son and if I felt myself flagging I only had to look at my beautiful baby and it was a big weight to put on his shoulders but the reality was, he kept me going.
It may seem odd to you that I am now going to suggest that, on reflection, I can see that for us facing up to the diagnosis did bring a positive; the opportunity to make the most of Archie's short but inspiring life. For us that meant getting away and doing stuff and we were lucky to be able to spend three blissful weeks in the Maldives. The memories I have of the time we spent there with Archie splashing around in the sea, have carried me through some of my darkest moments.
I was lucky enough to be given some invaluable advice by another mother shortly after his diagnosis and I'd like to pass this on to you; build your memories and record your time together, photographs and video become invaluable tools later on and make the most of time you all have together, it is not ******* fair but the reality of this disorder means there isn't ever going to be enough time.
If you want to talk, shout at someone, or to ask anything, please Nikki don't be shy and give me a call on (number cut and emailed for privacy - webmaster).
Look after yourself and much love to you all.
Emma xxxxxxxxxxxxxxxxxx
PS Arhie has an album at the smart groups site |
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Re: SMA 1 |
| Hi Nikki, i really understand what you are going through as i myself experienced it very recently. My son Ethan was born last August, he was diagnosed 3months later with SMA Type1. The day i was told he had this i broke down as i had searched the web and was faced with the dread that "SMA Type 1" do not live to the age of 2. I refused to believe this but after speaking with a few mums who had gone through the same experience i changed from being in denial to deciding that if this was true, and i was going to lose my son, then i had to be the best mum for Ethan in the time he was to spend with me as this was the only life he would know. Since that day i just loved Ethan and learned to taake care of him and on a daily basis. He was always surrounded by love and was always smiling and happy. This is was kept me strong his smile throughout. No matter how terrible it was knowing he would pass away, HE didnt know ,just like he didnt know that we are supposed to crawl, sit up, die old etc. For him this life was the only life he knew, a life full of attention from people who loved him. Ethan passed away in peacefully in my arms in April this year with 8months and 3weeks of age. It is very hard to accept losing a son.How this can still happen at this time and age is unreal but it is and unfortunately we mothers have to cope with it the best way we can. Please don't be in denial, read about SMA and learn about how to take care of your son, so that you can be the best mum to your him, and do loads of photos and videos cause that's what will stay with you. The memory that you did all you could for him, and if you can do it as a family, as he will feel part of it and it will keep you united. You can email me whenever you want and i send you and your family a big hug. Abi xx |
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