Category: Family…

True Selflessness

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Intense love does not measure, it just gives.
– Mother Teresa

I always knew that motherhood would be a selfless endeavor. From the very beginning, your body, your time, your thoughts, everything revolves around, and belongs to, your children. Before I became a mother I had an idea about what it looked like to be selfless and I knew I could handle it with the Lord’s help. After all, a mother’s love is one of the strongest forces on earth, and I was ready for the challenges.

I had no idea just how “selfless” my life would become when Tori became sick.

By the way, I don’t write this (or any other post) to invite pity or sympathy, or even accolades. Rather, I continually strive to be transparent during this journey in hopes that someone will be encouraged or challenged by how the Lord is speaking to our hearts and working in our lives.

Here’s my reality and a glimpse into my daily life with a terminally-ill child.

I haven’t had more than 5 full nights of sleep (defined as 5 straight hours) since Tori was born. To say that I am exhausted is an understatement.

When she was healthy, the sleep deprivation was bearable because she was such a joy, such a delight. I didn’t mind nursing her every two or three hours because she was always so happy, so content. Watching her learn and grow filled my heart with enough energy to endure the sleepless nights (and days). Her smile and laughter would fill my heart with a palpable joy and my heart would overflow with love. That was my reward and it filled me up like nothing (except the Lord) ever has.

When she was healthy, I was still able to do things for myself (like shower and eat a good lunch) because she was content to play with her toys on her own and would nap without being held for 20-30 minutes at a time. I could still take care of our home and do things for myself like shop, read, eat meals, etc.

My view of what selflessness means changed drastically in January 2015.

“For even the Son of Man (Jesus) came not to be served but to serve others and to give his life as a ransom for many.” – Mark 10:45

My days are a blur, much like the lives of those with healthy babies, but there is no tangible “reward” for my selfless service anymore.

My days now revolve around medication and feeding schedules, appointments with specialists and Early Intervention (which is a WONDERFUL program and I am so thankful that our tax dollars go to pay for this), and keeping Tori comfortable, which usually means rocking her in our recliner most of the day.

If I am lucky (or if someone comes over to hold Tori), I can take a five minute shower while Tori stares at her light-up giraffe on her changing table (it has rails and she doesn’t roll, so she is completely safe).

Eating doesn’t always happen – at least not healthy eating.

I rarely leave the house because Tori doesn’t like being in the car and we aren’t sure if she is in pain while in the car seat. Thankfully, I just discovered that our local grocery store will deliver groceries for a nominal fee (and the first 60 days are free). What an amazing blessing this service will be.

Doing simple things for myself usually doesn’t happen at all these days. As much as I want to work on her Project Life album, read my Bible (not on my phone), or even CLEAN MY HOUSE (yes, I actually long to do normal things like that now), they just don’t happen until Brennan is home for the evening, if at all. And even then, I struggle between wanting to clean my house/do things for myself, and wanting to spend time as a family doing other things.

I don’t think about how little I am doing for myself very often, and when I do, it is then that I am overwhelmed by the energy my life currently requires. I went from such an easygoing, low maintenance life (even with a baby) to a life that is so high maintenance that it is overwhelming at times.

I don’t like this, I don’t want this, and I keep praying it’s all a nightmare.

Yet, I don’t think about how hard it is as I am living it – I just do it.

Though my priorities have shifted drastically in the past three months, I know that I have to find a balance because I need to take care of myself while also caring for Tori. Now that her G-Tube surgery is complete and her appointments outside the home are slowing down, I am hoping to have more time to figure out how to accomplish these things.

Through all of this, I am continually learning to praise the Lord in the midst of these difficult and unwanted circumstances because I know that He is using them to refine me and to make me more like Jesus.

Does this mean I like what is happening? No.

Does this mean that I am a perfect Christian mother and entirely unselfish? Ha. Definitely not.

But, I trust that He is redeeming this terrible situation in ways we can’t even imagine. I trust that I will be a more loving and selfless person because of all that we are going through.

It’s a moment by moment process of surrendering my own desires for what is best for Tori. It isn’t easy, I’m not perfect at it, but thankfully we serve a God who showed us what selflessness looks like when He sent His son, Jesus, to our world two thousand years ago, and that same God is just as full of love, grace and mercy today as He was then.

Philippians 2:2-11

2 Is there any encouragement from belonging to Christ? Any comfort from his love? Any fellowship together in the Spirit? Are your hearts tender and compassionate? 2 Then make me truly happy by agreeing wholeheartedly with each other, loving one another, and working together with one mind and purpose.

3 Don’t be selfish; don’t try to impress others. Be humble, thinking of others as better than yourselves. 4 Don’t look out only for your own interests, but take an interest in others, too.

5 You must have the same attitude that Christ Jesus had.

6 Though he was God,[a]
    he did not think of equality with God
    as something to cling to.
7 Instead, he gave up his divine privileges[b];
    he took the humble position of a slave[c]
    and was born as a human being.
When he appeared in human form,[d]
8     he humbled himself in obedience to God
    and died a criminal’s death on a cross.

9 Therefore, God elevated him to the place of highest honor
    and gave him the name above all other names,
10 that at the name of Jesus every knee should bow,
    in heaven and on earth and under the earth,
11 and every tongue declare that Jesus Christ is Lord,
    to the glory of God the Father.

I live my life with my “hands empty, eyes up” and I “do the next thing” (both of those quotes were topics that were discussed at the “Night to Breathe” event and I will be writing more about them in the future). I surrender my exhaustion and my fear to the Lord and He sustains me. Most days, I have no idea how I got through it all, and that is a huge testament to God’s constant presence in our lives.

I don’t know what the future holds for our little family, and I am overwhelmed when I think about what may be coming our way. So I choose to live moment by moment, day by day, and I do whatever I can to serve my daughter as selflessly as I can, knowing that she is suffering more than I can begin to imagine, and knowing that Jesus Himself lived a completely selfless life to redeem us and be our perfect example. It truly is the least that I can do.

“Do you ever tell God that you are angry at him?”

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We are asked fairly often if we are angry at God or frustrated with Him.

We can honestly say no. We are not.

Are we curious to know why this is happening? Of course.

Do we have our moments of sorrow and frustration at our circumstances? Definitely.

But anger at God has not been and is not currently something we are experiencing.

God is God and we are not.

“My thoughts are nothing like your thoughts,” says the LORD. “And my ways are far beyond anything you could imagine.” Isaiah 55:8

As I wrote before, we trust God completely and, even though we don’t like what is happening, we know that we will eventually (even if in Heaven) understand why this happened. We know beyond any doubt that He is trustworthy, faithful, and loving.

We know that He will be glorified through her life no matter how long we have her here on earth.

This doesn’t mean that we are “okay” with Tori’s situation, blindly accepting it without emotion. But, it does mean that it’s “okay” in the sense that we know that God is in control, we know that He loves us – and her – and we know that He has an amazing plan for all of our lives. We are unable to comprehend His plan at this moment, but we trust that He has one.

We are filled with His peace that exceeds all that we understand. There is no earthly reason for us to be so at peace with all of this – it is absolutely from God. Being at peace doesn’t mean that we are okay with any of this, but it means that we trust the One who knows all and created all. We trust Him fully with our precious Tori and know that He loves her even more than we do. We know that He eventually uses all things for the good of those who love Him (Romans 8:28).

It is a moment-by-moment process of surrendering all of this to Him and choosing to not worry, to not be angry, and to continue to hope that He will choose to heal her here on earth. He is more than able, and nothing is impossible for Him (Luke 1:37)!

The daily reading for today is from Psalm 66, and it is so fitting for our situation, and for this question:

Psalm 66

1 Shout joyful praises to God, all the earth!
2     Sing about the glory of his name!
    Tell the world how glorious he is.
3 Say to God, “How awesome are your deeds!
    Your enemies cringe before your mighty power.
4 Everything on earth will worship you;
    they will sing your praises,
    shouting your name in glorious songs.” 

5 Come and see what our God has done,
    what awesome miracles he performs for people!
6 He made a dry path through the Red Sea,[a]
    and his people went across on foot.
    There we rejoiced in him.
7 For by his great power he rules forever.
    He watches every movement of the nations;
    let no rebel rise in defiance. Interlude

8 Let the whole world bless our God
    and loudly sing his praises.
9 Our lives are in his hands,
    and he keeps our feet from stumbling.
10 You have tested us, O God;
    you have purified us like silver.
11 You captured us in your net
    and laid the burden of slavery on our backs.
12 Then you put a leader over us.[b]
    We went through fire and flood,
    but you brought us to a place of great abundance.

13 Now I come to your Temple with burnt offerings
    to fulfill the vows I made to you—
14 yes, the sacred vows that I made
    when I was in deep trouble.
15 That is why I am sacrificing burnt offerings to you—
    the best of my rams as a pleasing aroma,
    and a sacrifice of bulls and male goats. Interlude

16 Come and listen, all you who fear God,
    and I will tell you what he did for me.
17 For I cried out to him for help,
    praising him as I spoke.
18 If I had not confessed the sin in my heart,
    the Lord would not have listened.
19 But God did listen!
    He paid attention to my prayer.
20 Praise God, who did not ignore my prayer
    or withdraw his unfailing love from me.

Praise God who does not ignore our prayers or withdraw His unfailing love from us.

What TO say and do for parents of terminally-ill children…

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My friend Sharon has been living with chronically-ill children for eighteen years now. She, more than anyone I personally know, can completely relate to our situation, and she offered the following advice to me right after Tori was diagnosed. I read it again last night and realized just how right she is.

Since so many ask how they can help parents like us, I wanted to share her wisdom. We are so thankful for the support and help we have received from family, friends, and even strangers!

_______________________

Support is important, but the one thing I personally hate is pity – PLEASE do not pity someone – please do not. Feel the hurt that they feel, feel the pain that they feel;  but, my son is still my son — I would never give him back.  I have had him for almost 18 years – others I know (unfortunately too many to name) have lost their kids before they reached 18 – BUT they loved every minute of it .

Now – WHAT can you do – or what helps?

1. Extended family and friends play an important and big role in helping children and their immediate families deal with a serious illness.

2. Listen, really listen, to your friend or family member. It’s important for people to tell their story – it helps with processing traumatic situations. So let them talk. Be a good listener. Even if you have no clue about the medical terms they are throwing around – feel free to ask.

3. Send meals. Remember that while they’re in hospitals, the food they have available is usually not great OR healthy. Try to plan for fresh foods, easy to heat up, easy to clean up or have something delivered, like pizza or Chinese.

4. Offer to babysit other children during appointments or accompany them to the appointment if they need someone to sit with them. 

5. Be available to help out in the middle of the night for ER trips and other emergencies.

6. Everyone wants to help immediately, but in a long-term illness, help will be needed for the long term. People get burned out easily so spread out the help so you can be strong for them. Remember, she will still need you in a month, three months, six months, even next year.

7. Offer (don’t just do it) to do things for them that require clearer thinking: contacting school or work, or other friends and family, etc.

8. Offer to be the person to gather mail (either at their house or set up a post office box if they want to keep their address private) and deliver it to them.

9. Use common sense when visiting. If you’ve been sick or feel like you’re getting sick, stay away. If your kid’s been sick, stay away. Your germs can make a compromised child VERY ill.

10. Help set up a notebook/Binder/flash drive to keep important medical information in or scan them for her and put them in a file or flash drive (I do this). A copy of all the paperwork from discharges, diagnoses, medication changes is so helpful and can be taken to all appointments or travels. If they’re out of town and have to go to an ER or urgent care, they have all the information handy and treatment is easier and safer.

11. Research and summarize disease information available on support group websites or ask questions to which you do not know the answers.

12.Be calm and levelheaded for your friend, as at times they will not be able to think clearly, be it from being stressed or overtired…It is okay to be upset, but it helps them for you to be logical, orderly and levelheaded. It’s calming to them and helps them see things that they may not see with everything going on.

13. Offer to pick up medication at the pharmacy while you’re out. If you’re heading to the grocery store, call before and see if they need anything.

14. Gather folks to help clean and disinfect their home before they come home from the hospital, especially if there’s been surgery.

15. Offer to do an overnight stay and let them get some uninterrupted nighttime sleep. Sleeping in the day is fine, but there’s nothing quite like a good 6 hour stretch in the night to make a parent refreshed.

16. Make a gift bag of Lysol, Clorox, wipes, masks for the kid when in public, soaps, and hand sanitizer. When dealing with sick kids, you HAVE to be ultra clean all the time. A cold to you could mean death to a child with compromised immunity.

17. Offer to help with the household chores or pet care. Offer to pay for a cleaning service or dog sitter/walker.

18. Be willing to just sit in the waiting room with your friend. Just having another person present can be a huge stress reliever.

19. If you’re not local and want to help, gift cards are a great idea. Visa or AMEX gift cards can be used almost anywhere and are a good choice if you’re unsure of what stores are local. Starbucks/gas cards/Target/Walmart are also good bets. Mobile gift cards for apps on an iPad or iPod are good, too. If the kid is older, a basket of puzzles, word games, etc.

20. Cards. notes, are wonderful.  The person does not need to respond but they know you are thinking of them. A good gift is a pretty box or basket to keep the cards in. 

21. AND FINALLY, be there for the long term – not just now but several months and years – she will still need support then.

Now here are some thing that should not be done – my pet peeves. I know so many mean well – but try to avoid doing these things.

1. Remember that your friendship and support really matters – it may be a lifeline for your loved one. So, if you say you’re going to help, commit to it. Having someone back out when your child is sick can be more devastating than you can imagine (trust me, I know this all too well first hand – I lost way too many friends and learned who my “real” friends truly were).

2. Don’t visit without checking first, even if it’s something you’ve planned with them in advance. One rough night can lead to a day of exhaustion for everyone, and they might not be up to visitors.

3. Don’t visit if you’ve recently been sick, feel like you may be getting sick, or your child has been sick. Your germs can make someone with a weakened immune system very ill.

4. Don’t prolong the visit. Watch for cues from the parent or the child that it’s time to wrap things up.

5. Don’t say, “God won’t give you more than you can handle.” It implies that God had a role in the child becoming ill and may make your friend feel as though he or she is being punished. To be honest, this is a big one for me and I still have a hard time dealing with it. It does make one feel like you are being punished.

6. Do not send latex balloons to the hospital. Many people are allergic to the latex in balloons and almost all children’s hospitals are latex free – I know 2 of my boys are allergic to it.

7. Avoid sending flowers. Sure, they’re pretty, but the child won’t care. Worse, if the child’s immune system has been compromised, anything that could cause an allergic reaction or carries bacteria could be life-threatening.

8. Don’t take it personally if your friend doesn’t want to talk. The stress of being a caregiver is overwhelming. Sometimes the best thing to do is just sit there with your friend and let her vent, cry or just sit in silence. Often your presence is enough.

9. Don’t be afraid to reach out with thoughtful phone calls or e-mails, but remember the family is likely overwhelmed and may not be able to respond. But know the thought is appreciated.

10. Don’t give medical advice. You’re not a doctor and you’re certainly not familiar enough with the child’s illness to be making medical calls. Unless you have a chronically ill child you do not know how the parent is feeling. Unless you have been in the parents shoes do not say I know how you feel, as trust me, you do not.

11. Don’t tell them to “chin up” or “cheer up.” They are entitled to their feelings, which may or may not be comfortable for you.

12. Don’t tell horror stories and don’t compare your friend’s child to another who was seriously ill, too. It won’t make anyone feel better. Do not try to compare your child having tubes in his ears or the flu to an incurable disease. Sorry, but things like this will make me (or others) want to strangle you.

13. Unless your child has the exact same diagnosis or has had the same surgery or the like, DO NOT offer unsolicited medical advice.  

14. Do not offer unproven medical advice or opinions.  Do not say “if you do this it will cure your child! I know a parent whose kid was cured of cancer using this herb…” It is not helpful. The best advice you can give is offer to pray or help.

15. The phrases below are not cool. Don’t use ’em. Don’t say:

• “I know JUST how you feel.” (no, you don’t – unless you are in the same boat and, even then, EVERY child is different.)

• “I feel helpless.” (Imagine how your friend feels – exactly – rather be there)

• “You need to talk about it.” (NO I don’t – if we want to talk we will)

• “Here! This is what you should do. I heard about it on Oprah, Dr. Oz, the Doctors.” (who cares what they have to say? They are not my child’s doctor.)

• “I don’t know how you’re managing it all. I’d die if it were me.” (thoughtless! Again, it does not help. No, you would not die and yes, you would be able to deal – it is your child you would love them.  Just because my child has an incurable disease does not mean I love them any less – to be honest, I treasure every minute I am given with them.)

• “Everything is going to be fine.” (you do not know that – and usually not true.)

• “What’s the life expectancy with that?” (morbid! – yes, I may strangle you if you say this.)

Now what should you say instead:

• “Do you need to talk/feel like talking? I’m here to listen.” (doesn’t pressure them to talk right then, but the offer is there – often I would open up after a while. The parent needs to learn who is paying lip service and who really does care what happens to their child.

• How are you/child feeling today?” (since every day is different – and yes, things can change on a daily or hourly basis. As long as you are being sincere this is perfect and simple to do.

• Ask about the disease or diagnosis and maybe look it up so you know more – BUT, do not offer suggestions for treatment. Ask questions, remember the major issues and look them up.

• Talk about care and hope. Talk about how sweet and precious their child is and how much your love them. You should validate the seriousness of the illness by confirming that they are facing something very difficult.

• ” I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you.” Acknowledge that you know your friend is in pain without saying you understand what she is going through.

• Ask the parents how they are doing. After you ask “How are you?” and they respond “I’m fine.” – wait for the truth after they say that. I can tell if you really want to know how I am doing – like I am about to have a break down, or I want to cry or I want to go back in time, etc.

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Thank you, Sharon, for allowing me to share this here! I know it will help so many people!