Friday, May 29, 2015

Dear Alone in the Lone Star,

For what we proclaim is not ourselves, but Jesus Christ as Lord, with ourselves as your servants for Jesus' sake. For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.
(2 Corinthians 4:5-10)

You are certainly not alone! There is nothing worse than laying in your bed, already feeling like crap, and then having more crap piled on you because you're missing something that's important to your daughters and important to you, and there is nothing you can do about it. I'm not going too far out on a limb here if I claim that every chronically ill parent has been there. I don't know that we're so much “borrowing trouble” as we are facing a reasonably possible reality when we worry about spending future family events alone in bed. One of my worst fears is that my daughter will begin to shrug my absence off, thinking, “Mom's just never here,” until she finally neither expects nor misses me. I can't stand that thought, but we can only force ourselves to do so much. We have to be kind to our bodies or we'll end up creating more problems for our family than we solve. If you have to stay in bed, stay in bed. Better to miss one day than five stuck in a hospital. (I learned that one the hard way).

Practically speaking, I'm not very familiar with fibromyalgia, but I can tell you what I plan to do when it comes to most important events in my kid's life like her graduation, confirmation, first day of college, wedding... provided we aren't all healed by then, that is. This advice can also be used for surviving big holidays, vacations, or reunions.

1. Plan ahead and be prepared to drop a little extra cash here and there. You don't need to host a party in your home, and you don't need to be the one to feed everyone no matter what your family traditions have been in the past. Go out to dinner, have it catered, or ask another family member to host. Consider using a wheelchair. If you have to travel, do it in the most comfortable way you can. If you have to drive for a few hours or more, make a lot of stops to get out and move around. Try to get there a day or two early to rest. If you rent or own an RV, park it at the event center that night so you can lie down in a pinch. Get yourself a nice comfortable dress or suit and pair of shoes.

2. Change your expectations. Accept that maybe the most you can do in you girls' dressing room is sit in a chair and talk and laugh with them. You don't have to be the one running around making sure everything is just so, and you don't have to be in every picture, you don't have to dance to every song or talk to every guest. Ask someone to do your hair and makeup that day. These days aren't about you, and that should take a load off. All you HAVE to do is be present and listen.

3. Ask for help on those really big important days. Delegate & Moderate. Do not over do it on the days leading up to the event! You're not the only one who can adapt to a new normal. Your family and friends can help you meet your needs without making these special days about you. Talk to your husband, your daughters (who will be older), and your family and friends about your fears, and when they ask if there is anything they can do to help, be prepared to tell them what they can do. Someone can drive you to get your hair done or pick up your dry cleaning. Another can take you shopping for that comfortable outfit. Let your doctor know when an event is coming up that you don't want to miss. Maybe he can help you get through that day if it turns out to be a bad one. Don't turn your back on doctor-sanctioned medication on these once-in-a-lifetime days. But never ever NO NOT EVER try a new medication for the first time on that special day!!! Give it a few test runs first, or you might really be in a bad way.
4. Do over! If the worst happens and you're forced to miss an important event, get creative and plan a no-stress makeup event for just mom and daughter. If you miss helping her get ready for her prom, pick another night to get all dolled-up with her and go out to a fancy restaurant. If you missed her preschool graduation, invite the grandparents and put on a ceremony in your living room. The living room is also a great place for a makeup recital or play. This will be create precious, unique memories for you and your kiddos. Also, I suggest writing a letter to your oldest daughter about missing her preschool graduation, how sad it made you feel and why, and then save it. The next time you're forced to miss an event you wanted to attend, do the same thing. These letters may very well prove invaluable if you're ever on the phone with one of your daughters and she's in tears because her own kid graduated from preschool that day, and she couldn't make it because one of her patients went into cardiac arrest or she went into labor with her second kiddo or her car just plain wouldn't start. ;)

Now speaking from the heart, you already know you shouldn't beat yourself up for missing events in your kids' lives due to your illness because while you're missing a few events, you are NOT missing their lives: lives that you helped make. You were there for their first breath! We treasure moments with our kids to be sure, but we treasure our kids more. Your daughters want you at all their special days, I have no doubt, but you aren't letting your kids down. Fibromyalgia is. You are not your disease. Your disease is your cross. You are a Mom. Your kids know you love them with all your heart, and even at such young ages, they get that you're not staying in bed on purpose. Kids can be amazingly understanding if we just talk to them honestly and openly, and let them into our world even if it means letting them in on a little of our pain.

That being said, give way to the disappointment and guilt you harbor inside. Let yourself cry about it, be angry about it, confess it to God. (See "A Broken & Contrite Heart")“Bucking up” when you feel like garbage won't do anyone any good. Then, once you've had a good cry, remind yourself of the truth, of the good things left for you, and of the promise of God to be with you always and to wipe every tear from your eye (Mt. 28:20; Rev. 21:4). Jesus loves you no matter what. (Rom. 5:8; Heb. 13:8) He loves your daughters. He saw your little girl graduate. Pray for peace of mind and strength of body (Phil. 4:4-7). Confess to God the Father how guilty you feel, how put-upon you are (1 John 1:9), and ask Him to take the guilt and helplessness from your heart and replace it with a little compassion for yourself (Ps. 18:6). You know, the kind of compassion and understanding you'd show any other person in your shoes without thinking, but that we seem to think we cannot show ourselves even though it is commanded, albeit not directly (Lk. 10:27).
I'm sorry you're sick, Alone, but I am glad you found us.