Just What Was Needed

For those who couldn't make it or stay for the funeral service, I wanted to share this. Gene brought it up during the sermon. Macayla was born May 22, 2001 and died May 22, 2010. A few days later, we were riding in the van and when I looked up at the rearview mirror, I saw this:

The placard expired May 22, 2010. We would not need this placard another day! When we got this permit four years ago and saw the date, I wondered if we would ever have to renew it.

I Knew, But Now I KNOW

I've been to multiple funerals. Some have been close family, others just friends. I have always known the "wake," "visitation" or "receiving friends and family" portion of the funeral was an opportunity for the family to experience the comfort of others' presence. I always knew it was meant as an opportunity for others to view the body and have their own moment of closure.

I knew this, but now I KNOW in a new way. When we woke up yesterday morning, I told Jennifer I did not want to do this. I did not want to go to the funeral. I did not want to see Macayla's body again. I did not want to be around anyone. But she reminded me I had to. Macayla's life had a purpose and so did her funeral. We could not let her down. I felt drained of energy even before the day started, but after seeing all of the people come in and having the opportunity to interact with as many as we could, I was refreshed. There was no one phrase, cliche, or phrase that did it. It was simply the presence of all the people who love us and Macayla. It was the overwhelming work of God's grace through a crowd of love.

One of the last couples I spoke with had also lost a child some years ago. I shared this with them. I shared that I finally understood how this portion of a funeral worked. I came in depleted and left for the worship serviced recharged. They relayed a very similar experience with their daughter's death years ago. On top of that, we continue to sort the almost two hundred email messages, many cards and the endless supply of food! We are loved and we love all of you for being here.

When Macayla was born, I thought of a possible wedding in the future. Praying for the right man for her. Praying we could pay for the wedding! Praying I could be there to see it. I thought about the day I would walk her down the aisle. Yesterday, I walked my little girl down the aisle. Not the way I expected or wanted. But I took her to the Groom of grooms. Her mother and I gave her away to the best. The Bible speaks in metaphors of Jesus as the groom and the Church as His bride. Macayla had to leave us, but she has cleaved to Christ in the fullest way possible. Thank you all for being a witness and support to Macayla's life and transition to a new life. Thank you all for your prayers and support over the years. Thank you all for just being there, in presence, prayer and thoughts.

Macayla still has a few more things to say. As the next couple of weeks unfold we will try to share those messages. We are still digesting the last two weeks and there are both some medical lessons we can share on the Uncommon Needs blog as well as some testimony to how this process impacts our family and others. Stay Tuned! We love you.

Permission

Many people have questions they don't want to bother us with right now and we understand that. So let me just answer some of those questions for you.

If you are planning on coming to Macayla's funeral, you have permission to laugh, cry, weep, smile, joke, look around, talk to us or not talk to us, see Macayla or not see Macayla. KIDS HAVE PERMISSION TO BE KIDS DURING THE VISITATION AND SERVICE! You have permission to visit with one another, talk out loud, laugh, cry or just be silent. You have permission to NOT manufacture a mood. Come as you are and as you feel. That's what we are doing. No, we are not trying to make it a festival, but we also are not trying to make it a doom-and-gloom convention either. Again, come as you are and as you feel.

As far as children: if there were ever a funeral appropriate for children, it will be Macayla's. We understand if your child does not want to see Macayla and we understand if they do simply out of curiosity. We are purposefully setting up the visitation as a gathering of friends and family and will make it possible for someone to visit with us and not have to see Macayla. The room will be set up so that they can look at pictures, videos and other things and never see us or Macayla if they so desire. But if they do, the option is there as well. This can be an opportunity to have much needed discussions about life but that is not required. Again, we want kids to be kids. Our son Jacob will be there and we are going to let Jacob be himself. We even have a friend he can go to in case he just needs to get out of the fray and get away for a moment. But if there are other kids there, being kids, then I bet he will probably just want to hang out with them.

We recognize our grief. We miss Macayla terribly. That grief will intensify in the weeks to come as life settles back into some kind of routine and Macayla is no longer part of that daily routine. But we also have much to celebrate and be thankful for. Macayla is a beautiful gift from God. She had many hardships but a smile that melted them all. She is still my little girl and always will be. We celebrate she is whole now. Sure we wish she could have been healed on this side of heaven, but we know her healing in heaven is more complete than any healing here on earth could have ever been. Never forget that miracles are temporary corrections in a fallen world. If we are healed of a tragedy today, it does not mean we are immune to other tragedies in the future. What Christ did on the cross ensures a final and complete healing in heaven and that is what Macayla has. We have much to celebrate.

Thank you to all your prayers and messages. We are so busy with preparations, we cannot respond to them all. Please know we are getting them and we feel the love and comfort. We love you and thank you for everything.

The Post I Never Wanted To Make...but

Macayla Grace Smoak died May 22, 2010 in her home with her family around her. It was not only the day she was born, but the day she was reborn into a new body and life. There is no more Battens disease for Macayla.

We will have a gathering of friends and family on Thursday, May 27, 2010 at 1:00 p.m. at Edwards Road Baptist Church in Greenville, SC. The celebration of her life will follow in the same place at 3:00 p.m. Burial will follow at Woodlawn Cemetery on Wade Hampton Blvd in Greenville, SC. Macayla is survived by her parents, Jennifer and Jeff Smoak and her younger brother, Jacob. Her grandparents are Brenda and Keith Scott, the late Tony Foster, Harriet Wood, Rodney and Barbara Smoak. The funeral will be CASUAL ATTIRE! That's right, you read correctly, CASUAL attire.

Please, let everyone know that instead of flowers, we would like folks to use that money for things that have great impact on others. Give it to any one of the following: Family Connection of South Carolina, the Make-A-Wish Foundation of SC, Camp New Hope, Hospice of the Upstate, Electric City Fellowship, or Edwards Road Baptist Church in honor of Macayla. You can follow these links and see how to do this.

Thank you all for your prayers and support. This is the one post I never wanted to make. This is the one post I never want anyone to make. But this post is not without hope. This post lets others know that there is a celebration coming on Thursday. It is a celebration of life. Macayla's death is hard, because her life is so amazing.

It is hard because for her to remain means she would continue to have impact on others here. For her to go means she is with Christ and free of the horrible disease that is a product of a fallen world. Do not pity her for she is free. She is whole. She was blind but now she sees. She was lame but now she walks. She was tired, but now she is at rest! She will not come back to us, but, if we know Christ as our Lord, we will go to her someday. We love her. We miss her. I keep checking my watch and walking back to her room to check on her. But she is not there. She does not need to be checked on any longer! No more meds. No more formula. No more needles. No more pain. I never wanted to make this post, but I've always wanted her to be whole and healed. Now she is.

Healed

Macayla's healing has finally come. She had to do it the way she has often done other changes. She had to wait until I updated the blog! Often I have blogged about Macayla's condition only to have her completely change it the next day and be a different child. Tonight is no exception.

I updated the blog at 11:04 p.m. writing of our uncertainty of when she would pass. At 11:25 p.m. she went home. She just had to get me one more time. Her breathing was much more peaceful at the end. I have ached today more than ever before. I hated to watch her struggle so much. But she made it. She got to celebrate her birthday here with us and now she is celebrating it in heaven! She is whole. She is in the complete rest of Christ. We love her so. I'm not exactly sure how time and space interface with the eternal aspect of heaven, but I know we will see each other again. From her perspective, we may already be there, but from ours, we have to wait. She cannot come to us, but we will go to her. She will remain in our hearts and minds until we are fully reunited again.

This is not the healing we preferred, but it is healing and perfect healing at that. Thank you for all the prayers, love, support, tears, hugs, food, and time you all have sacrificed for our family. We could not celebrate Macayla's life if it were not for our amazing Savior and His people! We love you all.

By the way, Macayla Grace Smoak was born May 22, 2001 @ 7:49 a.m. She died on May 22, 2010 @ 11:25 p.m. She was fully nine years old.

Well...

It has been a surreal and long three days. Each day we did not think Macayla would make it, but she has kept going. Multiple times today, she stopped breathing for a couple of minutes only to start again. We really thought she would not make it past today, but she is within an hour of getting to May 23rd.

Today was her birthday. We celebrated it last night just in case she was not with us today. Pictures will follow soon. But she kept going. As the day has gone on, her respiration rate has dropped and her heart beat has become very irregular. In fact, it stopped briefly a few minutes ago, but then started again when she gasped. She has kept us guessing and she is fighting to hang on.

Some may read these words and think it is good she is fighting that hard and staying with us. It is and it isn't. We do not want to loser her, but watching her over the last 72 hours has been terrible. At this point, we want her to go home. We want her to be completely healed. We want the struggle and suffering to stop. We love her and have reassured her that we are going to be alright and she is too. Jacob has been handling things at his own pace and he gave us some indication tonight that he is handling things better than we thought. He's such a special man and I am so proud of him and Macayla. She has been his little sister in many ways, but she is his big sister and has really taught him and the rest of us so much.

Please pray for full restoration for Macayla. We know that will mean she is in heaven, unless, of course, God decided to completely heal her here. We'd take it any way we can get it, as long as she is restored. Barring any miracle, Battens is 100% fatal. Nothing we do now will change that. We just want her to be as comfortable as possible.

Home Stretch

Macayla was a different child Thursday morning. She struggled through the night with some spastic breathing and patterns. By 6 a.m. she had a dusky complexion and blue lips. Her breathing was erratic and just didn't seem "right." Jennifer tried to go to work, but had to turn around before she even got out of Anderson.

Macayla was in fact different. Her blood pressure, heart rate, respiratory rate and temperature were all swinging wildly. Her heart rate changed a lot but stayed between 120 and 160. Her kidneys have all but stopped. Her breathing has become difficult. There has been swelling in her jaw line and tongue as she has retained fluids. Her pulse has been weak in her arms and legs as the circulation is staying concentrated in her trunk. She had a few "peaceful" spells today where she seemed in less distress. But in the evening, her breathing was sounding really bad and I repositioned her a little. She acted as if she was vomiting, but nothing came out. Because of her tongue and her jaw locked shut, I could not suction her for quite a while. She stopped breathing for almost thirty seconds. I really thought that was it. But she slowly started breathing and then went into a big grand mal seizure. I really thought that was it as she stopped breathing again. But slowly she came back.

We had to remove her feeding tube from her belly and suction because she was leaking huge amounts of fluids from her g-tube site. Sorry, that's gross, I know. But she was soaking her shirt and bed and not comfortable. We are keeping the Ativan and morphine going around the clock to make her comfortable. We have been reassured that she is probably fine from her perspective and is comatose. It's worse on us because we have to watch her shut down.

Several times today, I wondered if I were dreaming. I wondered if I would suddenly find myself startled awake in my bed and find it's just another day. But this is no dream. Often, I have heard or read poetic descriptions of death. Death may have a romantic or poetic side, but dying is hideous.

In spite of this, God has been gracious today. Love has surrounded us. We have laughed even. We have peace, and no, we cannot understand it. Peace does not make it easy or give us a whimsical attitude. It just is peace and is present in spite of the pain.

Calm

Macayla had a more alert afternoon yesterday with a few smiles. She began having a bad breathing pattern as the day went on. It was not as spastic, but was definitely a Cheyne-Stokes breathing pattern (a few breaths followed by a period of apnea). She began to moan and sigh with it some. Ativan did not seem to break up the pattern. Later we gave some morphine and she stopped. She has been asleep for about 16 hours with a good, normal breathing pattern. We will administer Ativan around the clock and the morphine as her breathing patterns dictate.

We know she could go up and down for quite a while. We also are aware she may go home at any moment. Our prayer is to be with her and keep her as comfortable as possible. Our prayer is she will know we are near and that Christ is ever present. We hope to celebrate her birthday Saturday and in honor of her we will eat Zaxby's or Papa John's or one of her other favorite foods. I will try to keep the blog up to date, but can't make promises. Nor can I promise it will always make sense as my vocabulary, grammar and spelling reflect the sluggish condition of my mind right now. Thanks to all for the prayers and support. Our family is so blessed by you all.

Hospice Roller Coaster

Macayla's weekend ended up worse than the week. She ran a fever on Saturday morning and we thought it could be the start of pneumonia from aspirating. Her chest xray came back negative and her urine, ears and sinuses were all clear as well. Her fever went away quickly and she even felt good Saturday afternoon.

Sunday evening was a different story. She started throwing up and would not stop and struggled to recover. Jennifer called me home from a Bible study because she couldn't get Macayla stabilized. Fortunately, Macayla recovered before I got home. But she started again shortly thereafter. With that spell, her breathing became labored and spastic. Her fever went to 103.2 and stayed there in spite of tylenol. Her blood pressure and pulse stayed elevated. Her breathing spasms also had a pattern of several quick, deep breaths followed by a spell of apnea. There is a medical name for this pattern, but I cannot remember it. With the spasms she moaned and sighed a lot and was very uncomfortable. So, we gave her morphine. We honestly thought it would be a while before we would ever have to use it. The morphine is to not only help with pain, but breathing spasms as well. Unfortunately, Macayla did not seem to respond at all to the morphine. Her fever continued with a little fluctuation up and down throughout the night. Her pulse stayed elevated. The spasms continued and more vomiting occurred around 2 or 3 a.m. Around 3:30 or 4 a.m. she finally seemed to calm down and the fever and spasms subsided. The pulse rate came down as well. She vomited once again around 8 a.m. but it was not as violent as the other times.

We honestly thought she was not going to be with us by morning. It was a hard night. But she settled down and pretty much slept all day. She has repeated the breathing pattern, but not had any more of the spasms. She made it through last night well and we all got to sleep. Hospice told us that children are hard to read in these situations. If an adult was doing what Macayla was doing, they would say the person was down to days or hours to live. But children can have these spells, bounce back for days or weeks and do it all again. It is a hospice roller coaster.

The cause of all these symptoms seems to be that her brain stem is being affected by the disease. Her hypothalamus could be causing the fevers and the brain stem is in charge of all the basic, automatic functions of our bodies. It controls breathing, heart, bladder, blood flow, etc. So, we are in uncharted territory now. Her symptoms have been changing on a weekly basis over the past couple of months. Some weeks bring big changes and some very minor. But she has not been in a real pattern or plateaued in her digression since Thanksgiving. It has been a steady decline.

Her birthday is coming up on Saturday and Jacob's is the following Saturday. She will be nine and he will be seven. For Macayla, there could be no better birthday than one in heaven, complete and whole. But my heart's desire is for her to celebrate it here. It's selfish, but I want her with us. A great friend reminded me that Jesus also prayed that He would not have to go to the cross. He endured it for the joy set before Him (see Hebrews), but He still prayed in the garden for another way. In the end He said, "Not mine, but Your will be done." Or as my friend said, "This is what I desire, but Father, You know best." So we will continue to pray for healing and comfort. We will also pray for continued peace no matter how Macayla is healed, with us or in heaven.

Rough Week

Macayla has not had a good week. Friday was the only day she did not throw up. She has been asleep most of the week with a few spells of semi-consciousness. Her bladder has been sluggish the last two days. Once again we are never sure if medications are making much of a difference with some of these things. We have had a lot of suctioning to do and she keeps producing plenty of crud to get out. With all of the vomiting, she runs the risk of aspiration and that could lead to pneumonia. So we try to keep her cleaned out.

She was out and unresponsive all of yesterday until around 6:30 p.m. and I got a few smiles. She half opened her eyes. But the smiles were strong. I just pray she knows we are here with her and that we can make her as comfortable as possible.

Need Something To Read?

In case you need a bit of something to read, might I suggest the following magazine:

Specifically, June's issue. It has some great articles, including a feature about Steven Curtis Chapman. It also happens to have an article written by SOMEONE YOU KNOW on page 28-29. You don't have to subscribe (though it would be worth it). You can just order the June issue online or go by your local Lifeway store and pick it up. Enjoy!

Special Needs Adoption - Dog Adoption

Jennifer and I have always talked about adoption. We wonder if that will be something we do at some point. We also wonder if we would adopt a special-needs child. We feel drawn to them, but we also hesitate knowing all too well what it would mean. But, in the meantime, as many of you know, we adopted a dog. Lily has been a great addition to our family. But it seems that our dog is a special-needs dog!

She has mange, which is common enough, but I never knew it was a genetic immune disorder! All dogs have mites and usually without issue. But if a dog has a suppressed immune system, they cannot resist the mites' impact. Further, it appears Lily is having short, focal seizures! Yes, seizures! On Jacob's page, I wrote about how much Lily and Jacob have in common. Well it appears she is trying to be like Macayla as well. Oh, and I say this sort of tongue-in-cheek, but Lily is trying to be like me and have sleep apnea! She is the first dog I've ever seen at the age of one who will fall asleep sitting up even when she is begging for food. How did we get a special-needs dog?