Sorry to be so delayed in updating. What a busy, exciting, draining, invigorating, challenging time this has been. Yes, all of those words are appropriate.

On the 11th, I headed to Grand Rapids with Maxim. We arrived at Devos Childrens Hospital at 6:50, ten minutes late technically, but really with plenty of time for signing in and getting prepped for surgery.

Dr. Reinhart came to the surgical waiting area about twenty minutes before the scheduled start time of 8:30 to just go over the details one more time. She said to anticipate at least four hours, maybe even up to six, depending on what they encountered in Maxim's feet. She said that her partner, Dr. Hotchkiss, was confident that they could even be finished in three, but she was not confident in this at all.

Well, just shy of three hours after the surgery began, it was finished. Dr. Reinhart came out and said that in the operating room, Dr. Hotchkiss convinced her to bet on the time in which they could complete the work. She lost and now owes him a Chinese dinner. I am not alarmed at having our doctors doing things like betting how fast they can complete a surgery. It was not a race. It was one doctor's level of confidence, based on more years of experience, over another's. Also, an indicator that they can keep a relaxed light heart while they work, which is not a bad thing.

Maxim requested glow in the dark casts again and once again enjoys seeing those when the lights go out at night.

Recovery has not been a piece of cake by any means but better in a few ways than his hip surgery in May. Overall, his appetite was better right away, although we still desire that he will consistently eat enough to start gaining weight. His weight is still not even a pound more than when we brought him home in January.

His digestion is better too than last time. These strong pain medications are generally extremely constipating and he really struggled with that in May. This time, he was almost back to normal the day we brought him home.

We were admitted on Friday the 11th and came home on Monday the 14th.

Not being able to come home on Sunday was discouraging because we knew Daniel would have to leave for business in Virginia on Monday and be gone most of the week. No fun to come home from the hospital and not see Papa. Also, Brina and Joel were starting some new co-op classes in a new challenging setting on Monday morning and I had really wanted to be there to encourage them (Cyan spent the day at Grandma and Grandpa's house, doing homework and witnessing the production of their amazing applesauce). Grandma and Grandpa and Great Uncle Roy ended up being chauffeurs for Brina and Joel (thank you every one of you for pitching in that day).

Anyway, just having the majority of us together again was great. Daniel and left me a really silly hand made card of encouragement and the kids had made welcome home cards for Maxim and/or me, and left Little Debbie oatmeal creme pies out for each of us.

On the way home from the hospital, I told Maxim we would stop at a store and I would let him pick out two helium balloons to enjoy. Three stores later, we found a place that actually carried them and had a working machine for blowing them up. I had told Maxim he could pick ANY two, so we came home with a giant Winnie the Pooh head and a huge multi-colored umbrella that says Happy Baby Shower on it. Too funny. I guess it's fitting since we didn't know Maxim as a baby and missed the typical festivities that go with preparing for a biological son or daughter.

Here are a few things to help others going into the surgery/recovery experience:

1) pray pray pray before the day
2) get good sleep before the day; hospitals are NOISY; not restful places at all
3) take more toiletries/changes of underwear than you think you need
4) bring things you like to do to pass the time when your child is in surgery and during rest times in the days before you go home.
5) bring things you think your child might enjoy doing to pass the time during those first days after surgery. Sometimes the pain will be such that they just won't be able to really focus well on other things. Sometimes they will be too groggy from medications. However, there will be times when they are alert and ready (they'll let you know) and certain activities can be terrific distractions from discomfort and pain.
puzzles, coloring books, magnetic board games,DVD/CD's from home

Even now that we are home, I find night is the worst time for Maxim. During the day, his mind is on different activities he's is involved or helping/watching others. For example, yesterday he was busy with a Veggie Tales movie, helping make bread and wind yarn, going to Walmart for a few things we needed to prepare for Sukkot, building with Legos, etc. He didn't really have time to think about his legs/feet for the most part.

At night, however, when he is just lying there waiting for sleep to come, every little discomfort, itch, pain in keenly noticed. The timing of his pain meds is better balanced now and he is feeling more independently mobile again so this helps, in that pain is better managed and when he does feel uncomfortable, he knows to get himself into another position he likes instead of being solely at the mercy of what I think he might need.

Two other things to think about if you're on a similar journey with your child or any loved one:

1) I can't emphasize enough, do what you have to do as the caretaker to stay healthy. Sometimes as parents/caretakers, we are so busy attending to someone else's very really needs, we don't think about our own valid requirements for strength and a sound mind. So make yourself sit down, make yourself get the exercise you need, eat real meals (not just quick maybe not so healthy snacks). If you let yourself wear down, it will show up in lack of patience, mindless decision making, and general fatigue.

2) pay close attention to how prescriptions are written out, filled, and labelled. We almost couldn't get refills for Maxim the other day because the original pharmacy noted they had given us a ten day supply when it was actually only 5 1/2.

One really neat thing that makes all of this craziness, pain, stress, worth it (not that I want Maxim to have to go through this or wish it on anyone else) is our awareness that God is teaching us very specific lessons right now in faith, prayer and healing. He is obviously aware of what we're going through and is supplying our needs, as a family and as individuals.

The other night, Cyan was feeling terrible with the flu. Tired, congested, sore throat and violently upset stomach. She had asked me to pray for her so I went into the living room. Maxim was there as well, and when I held Cyan's hand and began to pray, Maxim came over and took her hand as well. When I finished praying, he asked if he could too. I didn't discourage this, but I expected his typical thank you list prayer for every item he has noticed or learned about on a particular day. However, he prayed a very sweet prayer specifically for God to help Cyan feel better and he also thanked God for helping his feet. Wow! How neat to see that milestone of growth in his prayer life and thinking about the needs of others.

Surgeries is no fun. Shy of the miracles we believe in coming to pass, there are more down the road. We so desire Maxim to not have this road but it is his right now. He has a family around him to share it with. Not with perfect skill or attitude at every moment but we are there for him. To adjust his pillows one more time. To carry him to the bathroom. To tip things and lift things at odd angles so he can see and participate, whatever it takes. To give the pain medicines every four hours. To pretend his stuffed dog Lucy needs medicine too and to be turned on her back like him. Etc. To keep praying out loud for him and anointing him with oil and speaking hope and vision into his life.

God is using what Maxim needs to remind us what we all need. Healing of body, mind and spirit from the Only One Who can supply. Maxim is learning to thank God for the little things, and pray boldly for the big things. This happens to be what God is teaching our whole household right now.

So all the words at the beginning of this post fit.

Ready for Miracles

Dear God,

Give me the strength to be present at my child's pain.
Help me to have faith in his competence.
Help me to be honest with him.
Help me to convey the confidence I have in him.
Spare me the necessity of using force.
Keep me from denying or minimizing what he is experiencing.
Don't let me abandon him in any way because of my own fear and weakness.
Don't let me be overpowered by my frustration and feelings of helplessness.
Remind me that pain is survivable.
Remind me that he knows that I would not permit this if it were not necessary.
Help me bear my suffering with strength, dignity, and honesty and so provide an example that will calm and reassure him.
Remind me that my touch, my smell, my presence are all to him.
Help me to stay here beside him.
Amen.

This was the prayer on another mom, Christine's, blog this morning. It is the perfect encouragement going into Maxim's surgery tomorrow morning. I have so wanted to teach Maxim, as with all my kids, not to be a whiner for no good reason. At the same time, I obviously need to exercise patience and compassion because his journey does include some real pain and discomfort during and after surgeries and therapy.
I don't want to minimize, or blow off, his real need for comforting and encouragment along the way. When a child is disabled, there is an extra challenge that affects the entire household; how to attend to the real needs without making that needy child the center of everything.

Last night, Daniel and I took Cyan and Maxim to a prayer meeting with a group of people who are, like many believers, striving to more fully understand listening to God and nurturing a true two-way communing with Him. Deepening our belief that this is even possible because of the shed blood of Christ affects the confidence and boldness with which we pray. Scripture dictates that we pray without ceasing and without doubt. Hearing the testimonies of others who have experienced God's working in their lives in response to prayer helps us grow in our prayer life.

Anyway, by the time we went to the meeting, I have to admit I was feeling completely spent emotionally, physically and even spiritually. Being fatigued in any of these areas makes praying effectively a challenge.

I learned that when we are tired, we need to be in fellowship with others who are not at the moment. As others prayed for Maxim and Cyan, I realized that they were sensitive at that time to things I was not thinking to pray for because my energy has been stretched in too many directions lately. It was such a relief to hear how God was leading them to lift up certain aspects of our children's lives, even though we had never met before last week. They prayed what needed to be prayed, not because they personally knew us so well, but because they were responding to God's leading of what to lift up for His care.

We are not going to Grand Rapids tomorrow alone. We are going there with the Most High as our High Tower of Strength, Strong Refuge and Healer. It is His will to reveal Himself in places where He has been forgotten or never acknowledged at all. Wouldn't it be amazing if it were in a hospital through the feet of a little boy named Maxim!?