A Day in the Life of Madison

Friday, June 13, 2014

Not My Picture Perfect Life

After we received Madison's diagnosis in 2009, I started looking at life completely different.  I learned very quickly what really mattered in life.  Things that didn't bother me before, and things I never would have thought twice about after hearing, were now driving me crazy. 

For example, seeing new born baby pictures on Facebook with the caption "Blessed to have a healthy baby!"  Am I not blessed because my daughter wasn't healthy?  Or hearing, "My child has been sick for two weeks, I am SO tired and ready for this cold to go away."  Really?  Try dealing with a disease that you see every day of your child's life knowing that one day, this disease is going to take her life.  And, "Our kids drive us crazy.  We just need to get away.  We need a break from our kids."  I would give anything to spend one more minute with my child and you want to complain and get away from yours?

Then you see the picture perfect families on FaceBook, which I truly believe some are photo shopped.  I'll run in to people who I usually only see on Facebook and they look nothing like the pictures they post!  Sad.  I just want to grab these people and tell them, it's okay to not look perfect all the time.  Anyways, back on track .  I see people who want to give the impression that they have exactly what they always dreamed of.

We always dreamed of having two or three kids, they would be "x" amount of years apart, we would have a dog, our weekends would be spent watching our kids at sporting events, going to birthday parties, etc. It was my picture perfect dream. 

Why couldn't Shane and I have what we always dreamed and planned of having?  Why are we not able to see our Madison celebrating more birthdays, graduating kindergarten, playing sports, getting her driver's license, graduating high school, getting married, having children, etc. 

When I think I about what we are missing out on, I quickly think about what all we have gained.  This is not a tragedy that our Madison left this life early and that our life is not going the way we had planned.  I feel like if you are a believer in Jesus Christ, tragedy shouldn't even be in your vocabulary.  We REJOICE in knowing that Madison is in Heaven, made whole, and healed from the disease that she was born with.  Knowing that our child is going to spend ETERNITY in Heaven worshipping her Savior....THAT is what my dream is. 

God had other plans for us and thank goodness he did.  I have never learned to trust in Jesus more than I do now.  Now, my picture perfect dream is to live a God honoring life, trying to further his kingdom to the best of my ability.  I truly live every day for eternity.  This life seems so short when you think about where you will be for eternity.  These petty things that bother me now, won't matter in Heaven. 

I want to close this ranting post with a challenge for you.  We knew from an early age that our time with Madison was limited, so we had the opportunity that not every one gets.   We knew that every day we had with her, was going to be lived to the fullest.  None of us are guaranteed tomorrow.  What if you lost a child suddenly?  Would you have regrets?  But most importantly, would you have the promise of spending eternity with them? 

Our life may not be going the way that I planned, but thank goodness I have the promise of knowing that our family will be together for eternity and that should be every person's desire and dream. My prayer is that every parent will raise their child to know Jesus so they too can have this promise. 

Thursday, April 10, 2014

Sunday's A-Coming!

Shortly after Madison passed away, I was asked by my good friend, Tammy Kirkland, if I would be interested in co-facilitiating a Women's bible study with her on Sunday nights. When she told me the name of the bible study, Stronger by Angela Thomas, I immediately knew this was something I needed to do.

Little did I know, how much I truly needed this bible study. Every night I would read my study and call my sister, Amy, and good friend, Allison MacLean and tell them with such excitement what all I had just read. I pretty much read them the study every night too. I felt like this study was written just for me and at the same time that I could have co written it.  God knows exactly what we need, exactly when we need it, and he will ALWAYS provide it.  I needed this bible study more than I realized.  Even though the study ended a couple of weeks ago, I still find myself going back and rereading it. 

Ever since my Dad passed away in 2011, Easter has become my favorite holiday to celebrate.  Now that Madison has joined him, I literally can not wait until Easter this year.  This is the holiday that we celebrate every thing we believe in and have put our faith in to.  That the grave in not the end.  That Madison and Dad have been healed, have a new body, a new home, that I have been redeemed, and that one day, hopefully soon, I will be joining them in the magnificent place called Heaven.  They are not dead, but alive!  Oh hallelujah!  I just want to shout it from the roof tops!  THEY ARE ALIVE!

The last chapter of this study is titled My Easter Sunday God.  There is a quote in this chapter that really got me excited.  Here it is:

It's Friday. Jesus is arrested in the garden where He was praying. But Sunday's coming.
It's Friday. The disciples are hiding and Peter's denying that he knows the Lord. But Sunday's coming.
It's Friday. Jesus is standing before the high priest of Israel, silent as a lamb before the slaughter. But Sunday's coming.
It's Friday. Jesus is beaten, mocked, and spit upon. But Sunday's coming...
And on that horrible day 2,000 years ago, Jesus the Christ, the Lord of glory, the only begotten Son of God, the only perfect man died on the cross of Calvary. Satan thought that he had won the victory...but that was Friday.

It's Sunday, and the crucified and resurrected Christ has defeated death, hell, sin, and the grave. It's Sunday. And now everything has changed. It's the age of grace, God's grace poured out on all who would look to that crucified lamb of Calvary. Grace freely given to all who would believe that Jesus Christ died on the cross of Calvary, was buried, and rose again. All because it's Sunday.
~E.V. Hill

I don't know about you but I get overwhelmed with emotion when I read these two passages. That Jesus loves me SO much that he died this horrible death for me. That I am forgiven of all my sins. And best of all, he rose from that grave and defeated death. That death will be no more! That I will live for eternity in the presence of my Savior forever with Madison and Dad. I am so unworthy of this love that is given to me.

I truly can't wait to celebrate Easter but more importantly, I look forward to the day that I am called home or that Jesus returns.  Whichever happens first.  I can't wait until Shane and I are in Heaven and everything I love the most are together again.  I can't wait to see my sweet Savior's face and be with Madison and Dad, and all the loved ones who have gone before, again, for eternity. 

Sunday's a-coming!!!!



Friday, March 21, 2014

Living for Eternity

Since Madison arrived to her eternal home, I have had several instances where people just couldn't believe how well Shane and I are doing. I try to take this opportunity to share the word of Jesus with them and tell them the story of that day when Madison passed away, and how merciful Jesus was to us. Sometimes people are completely unphased by it and I just want to shake them and tell them, "Did you hear what I said?! She said she saw Jesus!... four times!" Then I walk away wondering how someone could hear Madison's story and not become a believer.
Today is the 21st, five months since Madison arrived. Even though her death certificate says the 22nd, I will always say the 21st is when she met Jesus.
When Madison was given the Ativan to help make her comfortable, the doctors explained to us that she would go into this deep sleep. Shortly after she had told us that she sees Jesus and told Shane and I that she would see us later, she fell into this deep sleep. She was hooked up to a pulse ox monitor that was telling us what her oxygen level and heart rate were at.
The doctors turned off the machine in the room before hand, so that we could focus on Madison, knowing that the end was drawing near, and not her numbers.
The doctors however, could see the numbers at the nurse's station in the hallway. We were all gathered around Madison and one of her doctors came and asked us if we would like him to lead us in a word of prayer. I knew then that her numbers were low and that we were close.
This was at about 11:45 on Monday night.
Shane and I asked our dear friend, Terry Kirkland, AKA Terwy by Madison, to lead us in word of prayer. We, along with all of Madison's doctors and nurses, laid hands on Madison as Terry prayed. As soon as Terry finished praying, and said Amen, we all truly believe Madison left and was in the arms of Jesus even though her heart was still beating. The warmth of her skin was now cool and her color immediately changed. Her hands, that had always been so contracted and curled up, I could now fully hold and straightened out, without any signs of pain or discomfort. We knew then she was gone.
Her heart didn't stop beating until 30 minutes later but we knew she was already in heaven.
Shane and I get asked quite frequently how we are doing and I feel like both of us always respond with how much peace we have. How can we NOT have peace? We were standing on holy ground that night in Children's Hospital, knowing we were in the presence of Lord, as we helped usher Madison home. We have no doubt that Madison arrived to heaven and was instantly healed. We can confidently say that the grave is not the final destination and that death does not have the final say.
I have contemplated on sharing this picture but feel like I should. It reflects how much peace we truly have.
This picture is the last picture that I had taken with Madison. It was taken about a hour after she passed away. I had just finished bathing her, and Shane and I were about to carry her body downstairs to the morgue. I remember not wanting to let go of her. Her airways had gotten so restricted over the last year, that she was no longer able to lay her head on my shoulder, as she couldn't breath when she tilted her head. It had been 8 months since I was able to hold her like this. It felt so normal. I remember my friend Allie taking this picture but when I saw this picture for the first time, I couldn't believe I had a smile.
When I look at this picture I see a very tired Mama, who is physically and emotionally drained, but spiritually, she is the strongest she has ever been.

"And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Jesus Christ."
~Philippians 4:7

"Strength and dignity are her clothing, and she laughs at the time to come."
~Proverbs 31:25

"Death is swallowed up in victory, O death, where is your victory? O death, where is your sting? Thanks be to God, who gives us the victory through our Lord Jesus Christ."
1 Corinthians 15:54-57

"Jesus said to her, "I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?"
~John 11:25-26

"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away."
~Revelation 21:4

Even though we have an overwhelming peace, we still miss Madison like crazy. I rejoice in knowing that Madison is no longer suffering. I long for the day when we are all reunited for eternity!
Oh, Jesus! Come quickly!

Monday, January 20, 2014

90 Days Closer to Heaven

Today marks 90 days that Madison has been in her eternal home.  Right now it feels like 90 years instead of days. 
I can't believe how much our lives have changed.  I think the hardest part has been adjusting to this new "normal".  My days with Madison were so structured.  She would wake up at around 8:30, drink a bottle, we would play until around 11:00, get our showers and get dressed, eat lunch, take a nap, drink another bottle, play some more, eat dinner, drink another bottle, and go to bed.  Everyday.  That was our routine. 
Missing our structure is just a small part.  I miss hearing her call for "Dane" aka Daddy.  I miss seeing the two of them together laughing and being silly.  I miss watching her praising our Savior.  I miss her calling me Abel.  I miss her being bossy.  I miss her singing.  I miss EVERYTHING about her and I ALWAYS will. 
For the most part, I feel like we are doing good.  With what we experienced in the hospital room, God has truly given us the peace that surpasses all understanding.  We have that peace in KNOWING that Madison is with Jesus and that she is fully restored and for that, we are able to smile. 
How can you not be happy when you know your loved one is in Heaven?
I remember when we found out that I was pregnant, I instantly began to pray for my child to come to Jesus.  I have always felt that a parent's biggest responsibility is leading their child to Christ. 
It has been my prayer from the very beginning of this journey that the Lord be glorified through it all.  I pray that through Madison's story, people will come to know Jesus. 
I shared Madison's homecoming story on this blog and over 10,000 people have read her story. 10,000 people! I have received numerous emails and Facebook messages of people who have been touched by her story. 
I have also received numerous messages of people wanting copies of her funeral service.  Her funeral service was not a sad occasion but a celebration of a precious life.  I truly did not want it to end.
After receiving the copy of her service on DVD I watched it 4 times in one day.  Some may not understand this and that is okay, hopefully one day you will, but watching her funeral service brings me a tremendous amount of joy.  It is a joy of anticipation, longing for the day that I will be able to stand beside her, worshipping our one true God!  Oh what a day that will be!!!!!

Friday, November 1, 2013

Madison's Homecoming

I cannot even begin to express my gratitude towards each and every one of you for the prayers, phone calls, texts, messages, and posts since our sweet, precious Madison entered her eternal home. Shane and I are heartbroken but rejoice in knowing that Madison has been completely restored. We were able to witness some of Madison's healing before she took her last breath. The story of what took place last week is nothing short of a miracle, but doesn't surprise me with the love that Madison has for Jesus.
But before I get to that, I want to speak for a minute on the power of prayer.  When we received Madison's diagnosis when she was a year old, there have been several specific things that I have prayed for every day since then--decisions that I didn't want to have to make and how Madison would pass away. I prayed for him to take the decision away from us about whether or not we would have to trach Madison. I prayed that we would not have to watch her struggle and for her passing to be peaceful. I also prayed that when that time would come, that it not be when I was alone with Madison; that Shane would be able to be there with us. The Lord answered every single one of these prayers that I (and so many of you) had prayed.
You may remember back in April, Madison got really sick and was hospitalized for two and a half weeks. From the very beginning, this cold/virus was different than any other sickness before. We even thought we were going to lose her then. On April 19th, I pleaded with the Lord to give me six more months with her.  That is exactly what he gave us.
After we got home from that hospital visit, Madison remained healthy for two months, but in August things started to change.  For the last fourteen weeks, everything that had worked in the past was no longer working.  We thought it was a cold that she could not shake, but looking back now we realize that it was the progression of her disease.  She was just not getting better and we could all tell she was growing very tired. She was requiring oxygen 24/7 and was up to 5 liters just to maintain her o2 levels.
Saturday night, October 19, she was very restless. She tossed and turned all night and could not seem to get comfortable. Around 7:15 that Sunday morning, Madison's pulse ox machine alarm sounded and I could tell she could not breathe. Her o2 level was 74 and her heart rate was 204. I quickly picked her up and switched her tubing from her oxygen machine to the tank that can go up to a higher flow. Once she got on the tank with 8 liters flowing, she was slowly able to catch her breath. We decided to take her to our pediatrician, who was on call. Another miracle that took place this week. After meeting with her and contacting our pulmonary doctor in Birmingham, we all made the decision it was time to take her up there. We rode by ambulance and arrived in Birmingham at about 9:15 Sunday night.
While we were in the ER waiting to get transferred to a room, Madison had another episode just like she did with me on Sunday morning. At this point, Madison was on 10 liters of oxygen and they had to bag her to get her airways to open up. After this episode, our pulmonary doctor came in and met with us and we knew then that decisions had to be made and we had to put a plan in place. I called Shane and he and our good friends, Tammy and Terry Kirkland, made the trip with him to Birmingham.
We knew that Madison's disease had progressed a lot the last six months. Her airways were already very narrow but had gotten worse. Any little stress for Madison would cause her airways to clamp down. At this point, our plan was to make her comfortable.
Monday morning Madison was begging to get in her walker. With us being in PICU, Madison had a lot of monitors hooked up to her so she really wasn't able to walk around but was able to stand up. She was starting to get really irritated and getting worked up because she was not able to go like she wanted. Shortly after we pulled her out of her walker, her airways clamped down again. We were all in the room with her (Shane, my mom, Tammy, Terry and I) and immediately there were about 10 other people desperately working to get her breathing again. Within an hour, Madison had been bagged three times. The third time, every time they tried to remove the bag, she would instantly get into distress again. The doctors then advised us that this was the time we needed to make her comfortable. We started her on morphine nebulizer treatments. She received 4 nebulizer treatments with 10cc of morphine in each one. The doctors had told us what to expect and said that Madison would go into a deep sleep and pass away while sleeping. During the third treatment we could see her getting very sleepy and starting to drift into this sleep the doctors spoke of. Shane and I were both in the bed with her, whispering in her ear that it was okay to go. We told her how much we loved her and how proud we were of how hard she has fought.  It was when we started the fourth treatment that one of my closest friends, Allison MacLean, walked in. As soon as she saw us telling Madison our goodbyes, she instantly ran to the bedside and started relaying a message to Madison from my sister, Amy.
As soon as Madison saw Allie, another miracle took place. It was almost as if the morphine was replaced with laughing gas. Madison became so hyper! She immediately wanted to get up, get her in walker, drink a baba (bottle), eat some Mickey Mouse (yogurt), and watch "eacha" (preacher).
We were all amazed at what we had just witnessed. As the day went on, the happier she got. She was constantly doing roll call to make sure we were all still there with her. I think we heard, "Abel, Dane, Mimi, Ta, Terwey, Allie!" at least 100 times that day. We had the best afternoon with her and it was like our Madison from a year ago. There was no struggle or shortness of breath in every word she said.
Since she hadn't really napped or slept good in almost two days, that afternoon, she was ready to take a nap. We got the room quiet, and she and I both took about a two hour nap in the hospital bed together. When we laid down, I was truly starting to think that we had just made yet another turnaround. But when she woke up, everything had changed. Her breathing was very labored and she just didn't look comfortable. Shane and I both knew that there was nothing else in our control that we could do.
Her two pulmonary doctors were paged and came right to us. We talked and the decision was made to start making her comfortable. At this point, she was getting morphine through the nebulizer every 30 minutes. We decided to also give her Ativan, which would help with her anxiety.
We were all gathered around her bed and the treatments started. The Ativan made her extremely comfortable and we were all at peace. Madison was still talking to us some and asked Shane and I for a lot of "ugs" (Madison's word for hug).  As she was growing more and more tired, we were all telling her how much we love her and that it was okay to go. She would open her eyes and look at Shane and I both and say "I wuv you."
A few minutes later, Madison opened her eyes and pulled the nebulizer mask off her face and looked at me and said "Abel, I see Jesus!" She said this with such excitement and I looked at everyone and asked them if I just heard what I thought I heard. A couple minutes later she said the same thing again. She ended up telling us this four times. After the fourth time, she looked at Shane and me and told us both individually, "I see you later!" This was the last thing she said.
The amazing thing about it is, Madison never once spoke the words "I see you later." I truly believe that what we witnessed was her healing already starting to take place.
Within 45 minutes, Madison took her last breath.
It was important to me the I give Madison her last bath before they came and got her body. I felt like this was the last motherly thing I could do for her. It was such a special time and something I will forever treasure. Her body looked like it was finally at rest. Shane held her while I dried her hair and of course, we put a pink bow in it.
Since Madison passed away during the night, they let Shane and I carry her to the morgue. We actually didn't go into the morgue but the attendants met us at the door. This was literally the hardest part of it all. This was the last time we would hold this earthly body we had loved and cared for for so long.
We were fortunate enough to get some pretty funny and sweet videos of Madison just hours before she passed away. Madison was worshipping Jesus up until the very end.

As I look back, I still can't believe she is really gone. It was fast but it wasn't, if that even makes sense.  We had nearly five years to prepare for this day.  It still doesn't make it any easier, but with what we experienced, we are overwhelmed with peace in knowing that she is now fully restored and that we will see her later! I am honored that God chose Shane and I to be the parents of His precious child. There is not one thing I would change.



Thursday, November 22, 2012

I just wanted to do a very quick update since I am so far behind on updating.  We have had a very busy summer and I haven't had much time to really post.  We are about to be keeping Madison in for the winter so I will have a lot of time to post about our summer and share some great stories, videos and pictures.

In May we submitted all the forms for the Madison's Make A Wish trip.  We are leaving this coming up week going to Disney.  I think Shane and I are more excited than Madison.  The entire family is going to get to go!  Amy, Paul, Aubrey, Grandma Jackie and mom!  All eight of us are staying in a two bedroom suite!  YIKES!  It's a good thing we all get along. 

I promise that as soon as we get back from our trip, I will do lots of blog posting.  Please be patient with me.  I am sorry that I haven't posted like I used to but I am so very thankful for being so busy.  That just means that Madison is happy and HEALTHY and able to be on the go. 

Thank you all for loving our precious Madison and taking this journey along with us. 

Thursday, May 10, 2012

Day 3 Birmingham

We had our last appointment this afternoon. It was with pulmonary and was not until 12:45. We took advantage of the late appointment and slept in until 9:00 this morning. We all slept 12 hours last night and it felt wonderful!

The pulmonary doctor went over the sleep study and just did a check up. He was pleased with how well she did with the sleep study and the results were good too. Normally, Madison sleeps with 1 liter of oxygen. During the sleep study they turned her oxygen off completely just to see how she would tolerate. When Madison's oxygen levels dropped below 88, they turned her to 1/4 of a liter. She did not drop any on that amount however she never got in to a deep sleep. The doctor agreed that we should keep her on one liter so she will rest better. 

Madison has also started a wheeze but there is no consistency to it at all. One day she will wheeze while in her walker, the next it will be in her car seat. It is never always in the same thing and it is not everyday. He wants us to do breathing treatments for a month twice a day and if we see a difference then that will become permanent. Overall, it was a good appointment. 

It is 6:50 and all three of us are already in bed. Mom and I are both on our iPads and Madison is out. We will be getting up early in the morning to go and get the newest member of the family: Madison's new puppy which is a teacup poodle.

We are ready to get home. We have missed Shane like crazy. I hate that he can't come on these long trips with us, but I love that I have a Mama that can come with us and we enjoy all the time we get to spend together.  She is such a huge help on these trips. This was our first visit without Dad and it has been so different. He was always our comedian and kept us in stitches the entire time.

There is no way I can thank you all enough for lifting our family up in prayer this past week. We will do this all again in another 6 months. I will post again after we get the new puppy. We still haven't decided on name yet. Our picks are Charlie, Bo or Bentley. I am sure though that Madison will end up calling this dog just "puppy!"