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Preparing for the Unthinkable

Preparing for the Unthinkable

[sws_pullquote_right] What can you do to help a friend or family member during a difficult time when you live far away? This is my journey of action. [/sws_pullquote_right] You are rocking along in your normal hectic everyday life, when the phone call comes that stops you in your tracks. Some big unexpected event has happened. An illness, a death, or any other unexpected tragedy befalls a loved one who is far away. You aren’t close enough to be there physically, and it makes you feel powerless to help.

Unfortunately, this has happened to me a few too many times and I am sorry to say that my first instinct is to freeze. I’m not sure what to say or do apart from giving my condolences, thoughts, or prayers. When one of those recent calls came, I decided I could make a difference in my loved one’s life, even from afar.

So what can you do to help a friend or family member during a difficult time when you live far away? This is my journey of action.

Khloe’s Story

I’ve known my sister-in-law, Kristi, for 16 years; we were also pregnant at the same time and both expecting girls. Hers was a long-awaited event, mine, a surprise joy, and we were due one week apart. Kristi gave birth to a beautiful daughter, Khloe, about two weeks early.

Everything seemed fine and we started to anticipate my baby’s arrival, and then the unthinkable happened. Her baby was rushed to the hospital after she stopped breathing. After many tests, the doctors diagnosed her with a congenital heart defect called Hypoplastic Left Heart Syndrome, but because it had gone undiagnosed for 10 days, she was in the beginning of cardiac failure and sepsis.

khloe cardiac clinic

Because my family was 8 hours away, and my baby was due at any time, we couldn’t go down to be with them. There were many tense minutes, hours, and days that were agonizing as Khloe’s health hung in the balance. So I began to think, what can I do from here? Nobody ever wants to think about what happens when the unthinkable happens, especially to a child, but when it does, what can you do to support the family it is happening to?

At first, prayer and emotional support were all I could offer. But then, other needs started to present themselves. They needed a hotel room because they couldn’t stay in the room with their daughter and lived too far away to go home, so we found points (as did other friends) to book rooms. They needed gift cards for food, so the request was sent and friends sent in gift cards which allowed them to buy food near the hospital.

Help With Communication

We encouraged them to set up a public blog and I asked if I could update on their behalf, as updating it themselves was too emotionally taxing. This helped centralize the communication from the hundreds of individual texts they were each getting. Kristi and Jon both felt that every time they answered an individual text or wrote a blog post, they had to relive the whole experience and it was just too hard. I also encouraged friends and family to share updates on Facebook and emailed and messaged ministers I knew.

thanksgiving khloe dress

Keep It Light… As Possible

My husband would send them a joke, normally dirty to amp up the funny, and an inspirational quote each day. They said that in the hospital that provided some much-needed hope and a few moments of levity. I sent random texts with thoughts, but always with the understanding that this was one-sided (no need to reply). Kristi said it helped to know we were thinking about her even if she didn’t have the strength to respond.

Once they got home and settled, the analyst in me got to work. I was determined to help navigate and solve any problems that could be solved or helped from afar like medical bills, living expenses, emotional support, and resources from parents whose children have this congenital heart defect. All of us in the family want to give support, but honestly, we are not experiencing it daily and they need some people who will understand what they are dealing with daily and what they are facing.

Grants & Financial Relief

Due to the illness, Kristi was going to have to take an unpaid leave of absence from work, but they would also face big medical bills. How were they going to be able to live and pay for everything? I don’t have all the answers, but I do have something that would help. One word: GRANTS! From those public ones like which they set up on Khloe’s behalf to very specific ones tied to Khloe’s condition which I have applied for on their behalf.

Help Organize Available Resources

Researching government programs like Social Security, Medicaid, and WIC can also be a help. Because of Khloe’s condition she was automatically eligible for Medicaid in Florida. This does NOT mean that she is automatically enrolled. You have to go through the process (please talk to the Social Security office AND the hospital’s social workers), but try it! Because of Medicaid, she was also automatically eligible for WIC. I found this out because I called her local WIC office to ask. That was it. The staff was very helpful and walked me through what Kristi would need to do to apply. Khloe has since developed a very severe protein allergy which has her on formula which is $48/can and she needs 12/month. So this bit now really helps.

I still haven’t physically met my sweet niece Khloe. The entire household has to be completely well before visiting as her immune system is fragile, and that just hasn’t happened yet with my family of five, but I am doing the best I can from here.

The long and the short of it is, even if you are far away, there are plenty of ways to help. Especially after the initial concern died down, the continued cards, phone calls, texts, and gift cards mean so much.


View Comments (2)
  • What a truly emotional and heart wrenching story. I know it must be difficult to share this story but it provides such a valuable resource to those who may experience something similar. I hope that beauty, light, grace, health, and healing will be with Khloe and your entire family!

    • Thank you! Yes, I cried as I wrote it. But we have so much joy and are so thankful for each day with Khloe! I wanted to share the story to hopefully inspire someone else.

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