ice-cream-bowl-clipart-k14833923

My heart has been very heavy lately, which is a feeling that I am very unused to. The fact is, as my children age, some into young adulthood, their problems are more real life problems, not just a tantrum in the grocery store. 2 of my younger children, with as many good traits and skills that they do have, do not having the capacity to be fully self-sufficient as adults, including incapacity to maintain a paying job. Yes, SSI is a possibility when they are adults, but even that provides only poverty level income. They are my family and my financial responsibility, which necessitates looking at the ability of our extremely diminishing finances to care for them during their lifetimes.

Although hubby and I both work, often 6 days a week, and are considered solidly middle class, our bank account does not reflect this. Every time Marie has a PTSD episode, (every 6 weeks to 2 months,) the ambulance bill exceeds $1000, money that is not reimbursable. (She requires additional emergency personnel because restraining her safely requires at least six, strong professional emergency adults.) We have funded one college tuition, and are currently funding another at expensive colleges to best meet the special needs of my children, (for which they received no financial assistance because we are, after all, “middle class”…) In order to attempt to give them the best education to be able to succeed despite their disabilities, we subsequently have taken a large second mortgage on our home. And then a third… Hubby and I live “paycheck to paycheck”, as I am sure many parents of children with disabilities live.

But I digress…what I was saddest about is that Steven now has partial custody of a beautiful, vivacious daughter who is one year old. (Note to parents: make sure you talk OFTEN about birth control to your teenagers, especially your teenagers with disabilities…) He, and we, do not have any extra money to support her in the manner to which we are accustomed to supporting our children. With his Asperger’s (and extremely capable skills in caring for animals,) Steven is a doting dad. Not working, he has tons of time to spend with her and can generally be seen sitting on the floor of the living room playing with her interactively, rocking her for a nap, singing her nursery rhymes, or taking her in the large, fenced in back yard to swing and explore and play to her heart’s content. What he does not have is money to pay for her needs, and this breaks my heart. This morning, he asked if I have any “change” and if he can go look in the car if there are any quarters that have fallen behind the seat. At last count, he’d managed to scrape up $2.19.

Driving home today, I was stopped by the light near our house. On the corner is an ice cream stand where our family often used to take a walk for ice cream. The kiddos would giggle over whether they would get the chocolate jimmies or colored ones, (the sprinkles were free!) Today, I noticed the young man sitting on the picnic bench. Across from him was a stroller with a young girl in it. Both had tan skin and wild, curly black hair. Holding a small container of ice cream in his hand, he was using a spoon to feed her, laughing and playing the “airplane” game to put the ice cream in her mouth. She was giggling also, throwing her arms in the air as if to say “wheeeeeee!” after every spoonful. Steven exhibited pure happiness, that special kind of happiness a parent has for their child. They were joyful and the fact that she wore cheap diapers and wore hand me downs that didn’t always fit did not matter at all. Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!

******

CoverEnTemp-1

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

Advertisements

Comments on: "Dad and Daughter shared Ice Cream" (37)

  1. Such a beautiful story. Blessings to you and your family.

  2. That certainly is a bittersweet reflection. I’m glad you had a chance to see them with the ice cream!

  3. That was a wonderful moment you shared. I have a suggestion (if you want to hear it) The ones who won’t be able to hold a job down (I have a brother like that). Can they do any kind of crafts? Or are they artistically inclined? If so you could probably sell crafts they make to put in an account for things they need.

    • Steven is actually super smart regarding all animals, especially reptiles. He does have asset up in the basement where he has boa constrictors that he mates, selling the babies for money. Not MUCH money, but at least a little bit. (Although I am convinced that FEEDING them all costs more than what he makes.) I know people get yucked out thinking about snakes, and I used to be the same way, but I have become used to them. They are a lot easier than cleaning up after a dog or a cat, although they don’t cuddle quite as well!

  4. Stephen sounds like a very sweet dad. You and your family are blessed.

  5. georgiakevin said:

    I agree with eatpray, your post is beautiful, your writing is outstanding, your heart couldn’t be bigger. I am in awe of you and your husband. You are true heroes, I believe that God uses special people to be special parents of children who have disabilities but parents of more than one child who has disabilities are the best of the best. I believe that every time God looks at you both or thinks of you both he smiles.

  6. Your post filled my heart today. Thank you for sharing.

  7. Thanks for this post! As always, it is touching and well-written. The first two paragraphs capture what sooo many special-needs families are facing. I keep looking around for affordable ways to launch our young people into a secure, at least minimally comfortable independent adulthood. Not much luck so far, but it does seem the problem is getting more and more attention from government, businesses, and nonprofits. Very best wishes to you and your remarkable family!

    • What I have noticed is that if my three youngest children were developmentally delayed intellectually instead of having psychiatric illnesses, adult services abound. For those who do not “test” to be intellectually delayed, there are no services…

  8. I’m sorry about the financial stress. This is a wonderful post. xo

  9. I love it when your posts pop up. You are one of my favorite people to read. Thanks for sharing from your heart. You (and your entire family) are richer than most people I know. As we are sending off our oldest to college, I am amazed what we have placed our hope in today’s culture. I hear parents talk about where their kids go and what they are going to be one day… it saddens me to no end to never hear the words, “I want my son to be … kind and a good father.” You have taught him lessons no college can teach … and have taught my heart a few by letting me read this! Blessings to you!!!!

  10. I agree with all the other comments above. I always look forward to your posts, with their unique blend of humour and heart-string tugs!

    I know there are mixed feelings associated with crowdfunding, but have you thought of doing this for your childrens’ education and other needs? After loving your book and admiring the dedication you and your husband have shown towards your family, I think people would be very generous.

    For example, if you are on Facebook, look at “Support Austin Our Hero”. This 15yo needed $4,000 for his latest surgery, posted a very simple video on Facebook, and he has received in excess of $300,000 plus endless gifts. It seems people are only too pleased to help people who are willing to help themselves. I would definitely contribute!

    Love is the most important thing, but we all need to pay the bills too… Best wishes from Melbourne, Australia!

    • Thank you for the suggestion, but I wouldn’t want to take money away from others who need it. However, my book will be coming out in paperback in a few weeks. I am hoping that will supplement our income, at least well enough to buy my granddaughter some diapers that don’t leak!!! (Ha ha!)

      • No, you wouldn’t be taking from others who need it, you would be allowing those of us who wish to share your journey to be able to do so.

  11. Reblogged this on Living Life Day by Day and commented:
    You know why I loved this post? Because it showed that I have absolutely no reason whatsoever to complain about my life right now, right here in this moment.

    Here is an amazing woman raising 5 children with disabilities; I have 1 son who is healthy physically and most days mentally (except for those days when teenage hormonal opinions and behaviour are displayed). We have no major medical bills and any medical situations are usually the exception rather than the norm. Although I might be living pay check to pay check, I have some funds tucked away for a rainy day and should soon be making the last payment on my mortgage.

    How dare I be ungrateful? How dare I complain? How dare I not celebrate this wonderful woman who is pressing on when others would have pressed out? If she can tell us that: “Suddenly I felt a little bit better about not have any money, because Steven taught me today that money does not makes life purposeful, but it is love, which is free. Life is good!” then I will proclaim from my little corner of the world: “Yes, life is indeed good!”

    What about yours?

  12. Thank you for sharing your story Teresa. So many people don’t realize the bind parents who have young adults with disabilities. They are supported when they are young, but then when they turn 21 the funds run out. With so many families in this situation, we are going to have to address this issue. Telling your story is one way to get the word out. Although there you have many challenges, I appreciate your positive attitude and your deep love of your family. I keep hearing this topic discussed on TV more frequently. Blessings to all of you!

  13. I’m so sorry about the financial worries. I wish I could wave a wand and make them disappear. 😦 They are part of your and your kids’ lives that you share with us, and thank you for sharing even this.

    That being said, thank you also for sharing the story of Steven and his daughter. I’ll tell you a story in turn, a story of a young man (a relative) who is 26 and who “lives” (if it can be called that) in an ever-increasing fog of depression and anxiety. Even the family member he lives with rarely sees him because he sleeps all day. I’ll also tell you the story of when this young man was a 9 month old baby, and I visited his family. He sat happily playing on the family room floor, and suddenly his father returned from work. All the heavyweight 6’3″ of his father towered over this baby, as the father bellowed, “JORDAN!!!! How many times have I TOLD you to put ONE toy away before you get ANOTHER ONE OUT?” That father is dead now, but I don’t ever remember one single time that he said his son’s name in any voice other than a yell or a scathingly disgusted tone. Granted, I only visited and didn’t live there, but if he talked to his son that way in front of a visiting in-law, I shudder to think what went on when no one was there. Oh, he had clothes and toys and other “things,” maybe even ice cream–but there was no love and laughter. You have prepared Steven to give the very best of what his child needs. I hope you will take comfort in that knowledge. You know that God will provide the rest.

    Thanks for the news about your book! I’ll definitely be buying copies for my four kids and two sisters! 🙂 Please let us know when it’s published!

  14. Beautiful. I was teary-eyed reading this. That little girl is lucky to have your son & your family to care for her and love her!

  15. Reblogged this on Simple NH Living and commented:
    What a beautiful read. Offering others our love, time and affection really is the best thing we can provide for them. Everyone struggles, but sometimes we need a reminder to enjoy the little moments.

  16. It is a heavy load that you and your husband have taken on. I’m sure there are days when the heaviness exceeds the joy of what you and your children have accomplished. Blessed are the joyful days. xxoo

  17. it is so true….. despite all the money spent on toys and lego and ‘stuff’ my girls can often tell me they’re bored. Yet a cardboard box will still entertain them for an hour or more. You have a tough set of challenges on your hands and you’re allowed to feel the pressure at times. What makes you special is that you can learn lessons from life…. sending love and hugs. x

  18. A lesson that I need to remember more often. Thank you for sharing!

  19. It is important to count our blessing for sure! the whole young adult thing can be a really big drain and it is hard to see that the chance of them being independent drifts away. Hugs xxx

  20. Thank you for sharing this story and being so vulnerable and authentic in doing so. I share your concern about the uncertainty of our children’s futures but I rest in the hand of the One who holds those futures. It is the only thing that gets me through some days.

    I agree also that you have taught your son and I’m sure your other children so many things that cannot be purchased with money and it is reflected in the way he interacts with his little girl. It doesn’t ease the financial burden of what’s to come, but be encouraged that you are investing in the things that matter most that money cannot buy–their lives. Keep up the good work! I will continue to lift you and your family in prayer.

  21. A giant YES to both the concern for the future and the grace of this moment.

  22. Reblogged this on Laughter: Carbonated Grace and commented:
    another moment of grace captured and shared so beautifully

  23. You post made me realise how much we take our NHS for granted here. In the UK there would certainly be no charges for ambulances, although this fact does get abused by some. You do a wonderful job with your children, it’s a shame you don’t get more assistance.

  24. I’ve read so many of your posts and you come across as such a loving, caring, selfless Mum. This post was lovely to read and it must make you proud to see your son relishing in the simple joys with his daughter. Your have instilled love and kindness into your kids and clearly it shows. Thank you for sharing 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Tag Cloud