Will I see her grow up?

Lets face it our kids will out live us. This usually is not an issue, as it is a normal part of life.

For some of us this is a real concern because of our children have special needs. I think for good reason we think of this more. Most of our kids will need some sort of help & some even life long help, depending on the severity of their autism. I have seen so many blog posts taking on this subject. Yet most deal with after our kids grow up & we are old. For me it is a little different. I may not see my youngest grow up.

I have mentioned before I have cancer. Not just any cancer but Neuroendocrine an incurable type of cancer. It is manageable to a point & right now controlled somewhat by medication & a form of chemo I will have to do for the rest of my life. I may live a long time with the cancer managed, but lets be real, right now from onset of the carcinoid syndrome a person has between 15-25 years. There are those who have lived longer & some not. It is a real gamble. It depends so much on how fast the disease progresses. I am 6 years in & my disease has been fairly stable until the past 2 years.

PA is 4 years old & I have between 9-19 years. Which means she could lose me when she is 13-23 years old. This is scary for me. She will still have her dad & older sister. However this kind of haunts me & I think of it often. I try not to dwell on it, but I need to start planning now. My biggest fear is I have no idea how much help she will need & who will be around & willing to help my family.

I know I am not the only one who may not see their child grow up. I am not the only ill parent in the world. I also know in a few years I will need more help caring for her & my own needs. I know I will be around for a while but I have no idea in what capacity I will be able to care for her.

I am just now starting to really look at all of this and it is a little overwhelming. I wish I could say I am putting money away into an account for this, but I am not. Nor will I be in a position anytime soon to do so, because both my husband & I are disabled. We use all of it right now to care for our two daughters. Now. We don’t have any extra to put away fro a rainy day let alone to have anything saved for when I am gone.

This is where my OCD thoughts take over and run amuck. My biggest fear is I will not have anything for my girls nor will I be able to have anything set aside to help my youngest with whatever she may need as far as help in the future. I still have no idea how independent she will be. She is on the higher functioning side of the spectrum & I know she will be a functioning member of society, but she will always have things to battle and she will need some sort of continuing care.

Sometimes life seems so lopsided that I even have to think of this now & not 10 years or more down the road. There are so many things I still need to look into like wills & other things. I think they should offer classes or something. These are just things that go through my mind & things I am dealing with at this moment in time. I did not mean for this to be a platform for me to be like “Oh look at how bad I have it.” or for anyone to feel sorry for me. This is just my reality & what I face every day.

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6 responses to “Will I see her grow up?

  1. This is a great example (and I need to heed my own advice, but it’s hard) of how we need to be living “as if.” I’ve been so neglectful that we haven’t even had our wills drawn up but after my friend died on the 10th, I’m thinking of this more acutely. Tomorrow, my husband and I might be incapacitated or dead or one of us dead and the other in a coma, and we have no plan for Patrick. My aneurysm which is not big enough or unstable enough for them to perform surgery but big enough to rupture and cause death regardless of its stability could take me any day. I can’t live like that.

    I want you to have hope. Maybe they will stumble upon a cure for your cancer at any time. My friend, Bill, was diagnosed with ALS almost 14-15 years ago. For most people with ALS, the life expectancy is 2-5 years. For several years he had no way to communicate. He did not think he would ever see his 2 girls graduate from high school let alone from college. For him, once he got a communication device, things improved. Life is not easy for them. He cannot move at all. Yet he still goes on. No cure for ALS yet, and any day I may get a phone call that he has passed, but I learned a lot about faith from him. Not necessarily faith in God, but faith that he will continue living. I hope he will get to see his daughters get married, have babies, and continue to be with us. I hope that for you, too.

  2. Dani – one of the most heartrending things in life is preparing for the unfair and unthinkable, and for most of us it is a distant thought when we kids, special needs or not.

    I remember vaguely,20 years ago,being barely a teenager as we dealt with this reality in our home as my own mother’s cancer got worse. She always hated, more than the discomfort, more than the outright pain, more than the sickness and chemo…she always hated most that she had to prepare fora future where she wasn’t present in our lives.

    I so wish I could offer you pretty words to make it all better, but you and I both know that isn’t what you need right now. That’s as far as my knowledge goes, though. I don’t have the words, because I don’t understand *your* struggle; it is uniquely your own. But I am here. I’ve been told I have great shoulders, perfect for leaning on and wonderful for virtual hugs.

    I wish I could help life make sense my friend, instead I can offer you my support, not pity, my unconditional love, not a fair-weather friend, and a shoulder that, more often than not can be there when you need it. I adore you and I know you can handle this challenge, because that’s what moms do, and you are an exceptional mom. *hugs*

  3. There are many ways to prepare our children for things. This is one no one can ever prepare for enough to make it not hurt. You are loved. You are needed. And it will always be so, whether you are here or not here. I guess that’s just part of being a mommy.

    While there are many things that we can worry about financially, those things have a way of working themselves out. What I would want if I was your daughter is you. And you can give that to your daughters through your words. You can create a journal filled with advice and stories of watching the girls grow and the silly times you’ve shared. Your memories, your recommendation for the colors they should wear at prom, or on their wedding day or the names you would choose for their babies. in this way you leave them behind with you – in journal form. (You have that a bit already with the blog!) That is the most beautiful – long lasting cherished gift they could receive. And you will always be with them every day of their lives. ❤ xoxo

  4. You’ve got a couple of great comments already so I won’t repeat what they’ve said 🙂 Thanks for sharing your thoughts on this D, I know of a Canadian organization http://www.planinstitute.ca – maybe you could contact them to see if there are any organizations like this in CA? It really would be good if you could get some help in planning for the future – I think if you could put together a plan you’d be able to rest easier and focus on the present rather than worrying about the future. *hugs* as always.

  5. I wish you all the best. You have a very rough road to travel. My ASD son is 12 and he is also high-functioning, but I too wonder what life will be like for him when he’s legally considered to be an adult. Hopefully you will have family and friends in place before the time comes so you can feel more at peace. May you live for many years to come.

  6. Keeping you in my prayers. I worry about these things myself, a lot, though I can only imagine how you feel. (((hugs))))