One of the things I think hits parents who adopt smack dab in the face is the medical life that comes with adopting kiddos with, well, medical needs. It is difficult to describe to someone who hasn't experienced it, and how it takes over every aspect of your lives - waking and sleeping. There is almost no such thing anymore as a "full night's sleep" or a "normal meal." Those every day parts of life you didn't realize you took so much comfort in is all swept away when you have a child with medical needs.
I was recently speaking with a mama who adopted a sweet little girl from China. This was not an inexperienced mom - she already had three children prior to the adoption. It isn't like she didn't understand what raising a child entailed. But what I heard was exhaustion and burn-out. Where was a single moment in which to rest? Days were spent juggling doctor appointments, therapy appointments, lab appointments, hospital stays and procedures, insurance phone calls, pharmacies, unique dietary needs, therapy needs, medicine schedules, oh! and the intense emotional trauma that came along with adopting a child who had been living in an orphanage for years. Head, explode.
It is easy to lose yourself in your baby's medical life. In fact, it seems impossible not to. You go into a special kind of survival mode. One slip up, and your baby is on the floor seizing. The stakes are high. You have to be on your game all the time. There is no room for error. Life is hard enough when you aren't making mistakes.
How does a marriage survive? How do siblings survive? How do you survive?
I don't have the answers. I've only been at this for about 6 years, so in most ways I'm still quite the novice. I love meeting with parents with kids with special needs or medical needs that have been at this for 10, 15, 20 years. They are my heroes. So full of wisdom, peace, and joy. Seriously! Every one of them. How the heck do you get there?
From my short stint in this medical world, here are a few of the things I've learned. For those of you reading this who know so much more than me, please feel free to add a comment with your suggestions!
1. Always be honest with your kids.
Even with your biological child, trust between a parent who takes you to these painful, invasive appointments, and a child who doesn't understand why they are being tortured, is strained and even nonexistent. My one-year-old daughter had extreme anger with me after undergoing a horrible medical year and wanted nothing to do with me. Building a foundation of trust in the midst of all of this is a very difficult endeavor, especially when trying to bond with your adopted little one.
Never trick a child into getting into the car with you to go to a doctor's appointment. Never tell a child during a blood draw "almost finished" when it isn't. Never tell them something isn't going to hurt when it will. Be very open and honest with them, while providing comfort and love. Something along the lines of "Yes, this blood draw will hurt. If you are able to hold still, it will be over faster. But always remember that I will be right here with you the entire time either way. I will never leave you, and I love you always. We are in this together. Do you know what I do when I'm afraid? ..."
I have even had to correct well-meaning nurses and doctors on this one. They feel horrible when they are doing a procedure that causes fear and pain, and they tend to say things like, "It doesn't hurt! You're okay! We're almost finished! Don't cry!" I will then step in (usually at a yell because the child is screaming) and say, "No, baby. It is not almost finished. It has only just begun. It is going to be another few minutes. I've got you though. I'm right here. It's okay to cry. I know you're afraid and it hurts."
Build that trust and eventually your child will come to believe you when you tell them that this test won't hurt. They will come to accept you as their protector who loves them and wants to do what's best for them. It takes years, but in the long run this is so much healthier than the short-term easy lie.
2. Role play
Kids have to process, and a lot of times they don't have the verbal skills or the emotional maturity to be able to talk things out like we do. What they use for emotional processing is play. It's counterintuative - if the thing your kid fears most in the world is an EEG, why would I play EEG with them at home? It is seriously their way of processing things and is incredibly healthy to do. Of course you'll have to be sensitive to their emotional needs and not push them into anything. Ladybug was so fearful of EEGs at age 1 (and 2 and 3) that if you even tried to touch her head she'd melt-down. However, it was interesting when I showed her how to do an EEG on her Pooh stuffed animal. Suddenly, she wanted to participate. It opened up a whole new world for her as she tried to work through what was going on and really helped take some of the power away from that fear. Here's some pictures of Panda's new favorite game - drawing everyone's blood.
3. Schedule phone time within your day and train your kids
This one is hard. One thing a parent new to this medical world may underestimate is the time spent on the phone with insurance and billing departments. Both are constantly making mistakes. Or being stupid. Or both. And pharmacies. Hours a week will be spent on the phone with them. Just accept it now. I highly recommend planning a system for these phone calls. In our situation, we spent time training Ladybug to not run a muck and act out when Mom was on the phone for two hours fighting with people. So we had to role play it. I had to practice with her when it wasn't an important call and apply immediate consequences and rewards. As she got older we practiced doing quiet activities in a separate room. Sometimes I'll try to put on a movie I know she'll sit down and watch. Now that Panda is here the training is back on. I have to physically block out times on my schedule when I will make these phone calls and then prepare accordingly. My calendar looks something like this:
(Don't mock my scheduled art time. I am just not a creative person and if I don't schedule it, it won't happen!)
4. Take photos and videos when possible
This goes along with role playing in with its mental health aspect. For those of you who have heard of a social story, this is similar. Take pictures of your doctors (with permission of course! Don't be creepy.) If there is ever a happy moment during a check-up or a procedure or a hospital stay, capture it on camera! Letting the kids look through pictures and use them to help tell their story helps heal. Plus then I use them the next time around to remind them of an upcoming appointment social story style. It also helps them remember that there were times that they actually weren't screaming.
5. Schedule time for play everyday
It is so easy to get so wrapped up in running from appointment to appointment, keeping kids fed, making sure medicine is on schedule and refilled regularly, and completing their therapy at home that play seems to fall into the background as unessential. Or even a time for Mom to clean the kitchen. But play is essential for brain development and bonding. As mentioned in #1, bonding with your medically heavy baby is crucial. I highly recommend the book Play: How it Shapes the Brain, Opens the Imagination, and Invigorates the Soul by Christopher Vaughan. It completely changed my outlook on the essential nature of scheduling play time. There also is a book sitting on my shelf to be read called Fun Games and Physical Activities to Help Heal Children Who Hurt. Hopefully it will provide some practical advice. I'll let you know once I actually read it!
This can be something as simple as allowing your little one to dress up as a doctor and give their specialist an exam at their next appointment. This one makes me laugh every time. The doctors don't mind at all! They love to play along.
Or as extensive as finding a little grassy knoll outside the medical center to picnic between appointments and letting the kids run around for thirty minutes. Run with them! Laugh with them. Enjoy those little moments - they'll get you through the rest of the day. And them too!
Elmo always gets his blood drawn too.
6. Find another parent who understands
It is like food for your soul to talk to another Mama or Dad who gets it. The ironic part about this is that these other medical parents also have incredibly demanding schedules and getting together almost seems impossible at times! Schedule far in advance, don't give up when you have to reschedule. Play dates, let's face it, are tough while we are all dealing with our children's unique needs. You need adult time. Time to be honest or broken or celebrate a win - just being yourself. Not on your mom-game.
A few suggestions if you don't know where to start - find a Facebook group unique to your child's medical need. Find a church nearby - it is becoming more common for churches to have parent support groups with special needs kiddos. Begin asking around - ask your child's therapists, ask other parents in waiting rooms at your appointments. Once you actually find a support system of like-minded parents, you won't be sorry for the effort of the search.
7. Don't quit praying.
This is far trickier than I ever thought it would be. There's a fine balance between accepting your new situation and rocking it, and never ceasing to pray for healing and miracles. I'm still learning this one - it's a challenge. When you pray fervently and emotionally hour after hour, day after day, week after week, for months and years, you begin to think the Lord's answer was just a hard "no." But the bible commands us to pray and assures us that prayer matters, so just because Ladybug is still having seizures after 5 years doesn't mean He isn't hearing me or that His answer was no. It is my job to have faith and never stop praying in earnest, and the rest is out of my hands. Prayer is essentially our only weapon in a situation that we have absolutely no control over (no matter how much we may try). I recently read two parables Jesus shared about being persistent in prayer, which my weary soul needed so much. This one was completely new to me:
And he told them a parable to the effect that they ought always to pray and not lose heart. He said, "In a certain city there was a judge who neither feared God nor respected man. And there was a widow in that city who kept coming to him and saying, 'Give me justice against my adversary.' For a while he refused, but afterward he said to himself, 'Though I neither fear God nor respect man, yet because this widow keeps bothering me, I will give her justice, so that she will not beat me down by her continual coming.'" And the Lord said, "Hear what the unrighteous judge says. And will not God give justice to his elect, who cry to him day and night? Will he delay long over them?"
(Luke 18:1-7)
I don't think I am at the joy and peace level of those other parents I look up to, but I have noticed a trend that I'm much more that way than I was 5 years ago. Thank the Lord! So if you are brand new to this world, hang in there. It gets better. You adjust to your new normal in ways you never thought you could. You get stronger. The bible says the Lord provides the strength and wisdom to those who ask, and so I'm learning to ask.
