Grandparents grieving and how you can help your grandchild with disabilities

Ellie was diagnosed inutero by ultrasound.  I remember walking out of the hospital and falling into my husbands arms and SOBBING uncontrollably in the parking lot.

We went home and I didn't even know how to process the news.  It was inconceivable.  How could this have happened?  Why me?  How could I possibly get through this?

Then after a few hours of crying, calming down and thinking I had come to terms with it (yeah right!!!!).  My husband and I decided we needed to call our parents and tell them the news.

When I called my parents my tears started coming again.  It was really really hard to break the news to my parents.  I'm not sure why?  I think I was having a hard time accepting the diagnosis, so how do explain something you can't even understand (emotionally) yourself to someone else.  Both of my parents were crying also.

For the first little while after the diagnosis (and maybe even now) I felt really defensive.  I guess I thought people would be critical and not love Ellie if she had disabilities.  But I felt like I already loved her before she was born.  Maybe I was wondering if I, myself, really could love someone with disabilities.  And of course I think I was worried if I would even have a baby, since we were told she could be still-born or die in the first year and half.  I felt like I had to be really on guard and stand up for her from the very beginning.  Maybe this stems from the fact that the perinatologist (Dr. for the baby while you are still pregnant) suggested that we could abort Ellie.

My Mom (Ellie's Grandma) has told me that it is really hard as a Grandparent of a grandchild with disabilities.  You have to grieve double.  You grieve for the grandchild and also for your own child (the parent of the child with disabilities).  And to top it off there is nothing you can do to help your grandchild.  You do not get to make any of the medical decisions, that is the parent's job.  So therefore, the situation seems out of your control.

That being said, there are many things that a grandparent can do to help.  I will give a few EXTRAORDINARY examples that my parents and in-laws have done to help.  I do not share these examples to make you think "wow, she has it easy...look at all the help she gets!".  But rather, I hope that somewhere a Grandparent will read this and that it might spark an idea of a way you can help.
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-When Ellie was about 2 and had a trach and ventilator, etc etc etc it was emotionally a really really hard time in my life.  I was unhappy, felt unloved, unsupported and the only solution I could come up with was to get a divorce.  This really wouldn't have solved anything, but I couldn't figure any other way to change my situation.

I talked with a social worker about it and he suggested that I needed to do a weekly datenight.  After giving a lot of excuses of why this wouldn't work and we couldn't do it, including money and medical issues of Ellie, he said "a datenight is cheaper than a divorce and a lot more fun".

We asked my parents to babysit so we could go on a single datenight, they agreed.  Somehow it snowballed into them watching ALL of my kids EVERY SINGLE SATURDAY night for over 12 years now.

Can you believe that?  What grandparents do that?  They literally saved my marriage.

Grandparents, I understand that this is WAAAAAYYY over the top.  Not everyone could do that.  But maybe as a Grandparent you could offer once every other month or once a month or something like that.

Now you're thinking...but there are too many medical or behavioral issues!  Try this and see what happens...ask your child..."I would like you to train me to take care of _____(fill in the name of your grandchild) so that you and _____(spouses name) can go on a datenight _______(fill in frequency)".  See what they say...I bet it will be "Yes".
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-My In-laws, who are retired, are always willing to watch my other children when Ellie has an extended inpatient hospital stay.  This sometimes happens for weeks or even months on end.  This is an enormous help to me because it takes every ounce of energy to worry about Ellie's medical needs and I just can't focus on outside day-to-day things.

It is also always a stress reliever when you don't have to take other kids to regular specialist appointments also.

Grandparents-Have you offered to watch the other grandchildren while your grandchild is inpatient or for regular Dr. appointments?

I know with me, I feel comfortable asking someone once or twice to watch my kids and after that I feel like I am indebted to them.  So if you truly want to help...you need to be slightly forceful.  When they come home from a Dr. appointment, ask when the next appointment is and offer to watch the kids again then.  Call at the beginning of the month and ask what appointments they have that month and see if you can help with any of them.
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-At one point when gas prices were high I was worried about the amount of money we were spending on gas to get to and from her Dr. appointments with her specialists at our local Children's Hospital.  I told my parents I was going to try riding public transportation to her appointments to save some money.

They said they would start paying for all of our gas to get to and from our Dr.'s appointments.  They added me onto one of their credit cards and told me to use it.  Keep in mind that my parents are not rich, however they are financially stable.  They felt like this was something they could do to help.  After a while this also expanded into them offering that I can use the credit card to pay for food while at the hospital, which was also becoming another large expense.

Grandparents, is there a way you could help your child financially?  Maybe it's not an ongoing thing, or maybe it is.  But how about giving your child a prepaid gas card for Dr. visits?  Or how about some money for food at the hospital?

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When Ellie was younger, I was basically home-bound with her. I felt like I was in prison.  I didn't even feel like I could go get a gallon of milk.  So when my parents or in-laws would call and say they were coming for a visit, I would ask them, "Can you swing by the store and buy me a gallon of milk, a loaf of bread, some peanut butter and a package of size 2 diapers".  It was not a problem for them and was a HUGE help for me.

Grandparents, can you call your child and say "I'm going to the store, can I pick you up a few things while I am out?"
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Both my parents and in-laws are really good about randomly offering to take my other children to McDonalds or to the store or to their house for a few hours, so I can sleep, or shower or relax.

Grandparents, can you offer to take the other children for a while to give your child a small break.  It will do wonders for them and you get to spend time with your Grandkids as well.
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Grandparents, by jumping in and giving service to your child and grandchild, you will reap immeasurable blessings for yourself and for your child and grandchild.  You can make a difference.

Grandparents, what ways have you helped?  What ideas has this post sparked in you?  Comment below.

Parents, What ways have others helped you?  Comment below.

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Flex spending

If you have a flex spending account to pay for medical expenses, you can use it to purchase OTC (Over the Counter) medications also.

If you have a credit/debit card tied to your flex account, often the OTC prescriptions will not be approved.  But if you save your receipts and have a Dr.'s prescription, you can submit it and be reimbursed.  The money will come out of your flex account and be paid back to your pocket.

Just make a list of the medications you normally use and have the Dr. to write you an RX.  Some examples include Ibuprofen, Acetaminophen, Pepto Bismal, Tums, Claritin, Zyrtec, Zantac, Prevacid, Saline nose spray,  contact lens solution, bandaids, etc...

Also, anytime the Dr. says to use something over the counter, have them write you a prescription for it, so you don't have to track down the Dr. later on.

Here is a post from irs.gov explaining this same concept.  https://www.irs.gov/uac/Affordable-Care-Act:-Questions-and-Answers-on-Over-the-Counter-Medicines-and-Drugs

Have you used this technique?  Do you have a flex account?  What things have you run through your flex account?  Please comment below.

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What can you count as medical expenses on your taxes?

There are some things that you can count on your taxes as medical expenses that you may not know about...

• home modifications for accessibility,
• childcare for your child with disabilities, 
• acupuncture, 
• chiropractor, 
• a medical conference (admission and transportation), 
• guide dog or service animal, 
• lodging if you used it while receiving medical care, 
• meals while inpatient, 
• osteopath, 
• tutor to help with mental or physical impairments, 
• telephone equipment for deaf/hard of hearing/or speech disability, 
• transportation for medical care

For a full list go to https://www.irs.gov/pub/irs-pdf/p502.pdf  it starts on page 5.

In order for the medical expenses to count, it must add to a certain percentage of your "Adjusted Gross Income" which changes each year.  For example here were the rules for 2015...

You can deduct on Schedule A (Form 1040) only the part of your medical and dental expenses that is more than 10% of your adjusted gross income (AGI). But if either you or your spouse was born before January 2, 1951, you can deduct the amount of your medical and dental expenses that is more than 7.5% of your AGI. If your medical and dental expenses aren't more than 10% of your AGI (7.5% if either you or your spouse was born before January 2, 1951), you can't claim a deduction.

A feeding chart

My daughter is on continuous feeds for 23-24 hours per day.  Her formula only lasts at room temperature for 3 hours.  So during the day we only put 3 hours worth of formula in the bag at a time.  At night we fill up the bag for the whole night and put an 2 ice packs surrounding the bag.

Although we try to put her to bed at a consistent time, it doesn't always happen.  Rather than calculate out how much formula we need to use to make it through the night, I created a chart.  I have included it below as an example.

I printed it off and laminated it (I just used clear tape) and I keep it in her feeding pump backpack.

How do you manage your child's continuous feeds?  Any tips for making things easier?  Please leave comments below, subscribe to this blog, and "like" our FB page to get more tips on raising a child with severe disabilities  https://www.facebook.com/SupportedInOurTrials/