Wednesday, September 2, 2009

The Funeral Program

Ethan’s Life Sketch by Heidi
Ethan Greg Skidmore was wanted by his mother and father for quite some time. The news we would be expecting a child came right after we decided it must not be meant to be. With the excitement of this news I prepared to endure another 5 months of nausea and vomiting and Cannon began his plans of becoming a BIG brother. What I didn’t know is that Greg, myself, and our family would be embarking on the most glorious, sacred, and beautifully heart wrenching journey that we had ever been on.

Four and a half months into the pregnancy we had our ultrasound. We brought Alexa and Gage with us. Alexa took the news of a third baby brother with class and Gage was ecstatic. Greg left with the children while I waited to see the doctor. That is when I was told there was something “drastically wrong” with the left side of his heart. We soon learned it was hypoplastic left heart syndrome.

From that moment on, we have forever been changed for the better. Before Ethan even arrived, our dearest friends and family rallied with earnest prayer, love, and care. The outpouring of support was, and still is, immense. And we soon found that our hearts and our lives would become intricately connected with new found friendships. Other “heart families” in the “heart world”. A subculture I never knew existed. We have made bonds that will last through this life and the life to come. For that Ethan, we our grateful.

Last December we learned Ethan wasn’t going to play by the rules. He developed fluid around his lungs in utero. Pleural effusions is the term. A term he came to know too well. It is a common complication after the THIRD surgery with HLHS children. And Ethan wasn’t even born yet! We were told he probably wouldn’t survive. Fortunately the fluid did not spread outside that pleural cavity and it eventually decreased so that he could be carried to full term. And on February 18, 2009 we had our super-hero. He was delivered via C-section. And as he was passed off from one doctor to the next all I saw a beautiful little boy, with a full head of dark hair. For those of you who don’t know, all of my other babies were born bald!

Ethan’s first 5 days were perfect. Well perfect if you kept him wrapped up in a blanket like a burrito and had his primary music playing. Ethan showed us his disliking for being bothered before he had even learned to give dirty looks. Every two hours the nurses had to assess Ethan. It was so predictable. As soon as the first side of the blanket was unwrapped the cry began. It wasn’t a cry of sadness, but a cry of telling nurse off (so to speak). And then, as soon as the first side of the blanket was tucked around him he instantly stopped.

It was also during these 5 days that we all came to love Ethan’s eyes. He focused and made direct eye contact from day one. His eyes were the window to his soul and showed us his spirit was wise beyond his years. His eyes’ expressions were passionate and fiery at times. They showed us his determination and desire to survive early on.

Then came day six. We tearfully handed over our baby to the OR team and put all our trust in the Lord and the wonderful team of doctors, nurses, and respiratory therapists at St. Joseph’s Hospital. After the surgery our surgeon came out and told us they had a surprise. Ethan’s already small and fragile aorta was wrapped around the back of his esophagus and came back in between the trachea and esophagus. Something he had personally never seen in all his years of experience. He explained that some complication may arrive from the repair, time would tell. Again, Ethan was not playing by the book. The first week of recovery was going great. But shortly after being extubated we learned that Ethan’s vocal chords were paralyzed and his airway was compromised. He required a tracheotomy to breathe and a feeding tube to be placed. As Ethan was dealing with that set of complications he was also dealing with pleural effusions, and multiple chest tube placements. The reality of a long hospital stay full of multiple procedures was setting in.

Our dedication to giving Ethan love and comfort became stronger. We were determined to get him through his struggles. Either Greg or I were always by his side. There were only on a few necessary times that we left Ethan. Birthdays, baptisms. . . And it had to be in the trusted care of one of his grandmothers. It is during this time that we learned how much Ethan loved to hold fingers, have his forehead rubbed (from right to left) and suck his pacifier, and not just any pacifier. The one that said “I love daddy” on it. (I still think Greg was sneaking sugar on it.) But that was the first sign of the eternal bond that would exist between Father and Son. Greg happily slept on that hospital bench in Room 18 every other night so that I could go home and get rest. Although the routine was exhausting. The time with Ethan was precious. “Precious” is THE ADJECTIVE that Greg has for Ethan. And it fits him perfect. Greg hated when Ethan had head IV’s. Because by the time they finished securing them with all that white tape, Greg felt like Ethan looked like he had a bow in his hair. . . and Ethan was not to have bows in his hair!

It is also during that time that the hospital staff became Ethan’s second family. He had many nurses who adored him and took care of him regularly. In time I began to think of them as second moms. However, they preferred to be referred to as Ethan, aka: Skiddy’s girlfriends. No one could take care of Ethan, or even just be in his room, without referring to those eyes of his. He was “all business” with those eyes. You knew how his little body was doing by those eyes. You knew if he cared about you with those eyes. He would stare into you as though he was reading your thoughts and knew your soul. Ethan would also give you the dirtiest look in the world if you were not making him happy. The furrow of his brow was priceless. His expressions captured our hearts. He had to use those eyes, for he had no voice with the trache in.

Greg, Ethan, and I soon learned we were priviledged to be involved with some of the most elite, dedicated professionals of their field. Our favorite nurses, respiratory therapists, and practitioners will ALWAYS hold a tender place our heart. They treated Ethan and our family with the upmost respect. And loved our child as their own. I loved them trying to give him Fohawks to no avail. That little bit of curl would eventually win and the Mohawk would turn into a curly cue. Then there were endless hours of patting his diaper, holding in his paci, and rubbing his head to comfort him, when we were not there, or when I had to walk away for a moment cause I could no longer watch what he was enduring.

I can’t tell you how many times we would see staff members walking on to the unit. They would walk by Ethan’s room and peek in, even before they checked in for the day. And they could not hide their expressions. There were smiles when he looked good, and very little meds or machines were in his room. And you would see the heads drop and pain in their eyes if they saw he was not in as good of a place as when they left him last. You had us all hooked Son. Everyone could see how amazing you are. Everyone was in the cheering section!

Finally we got the news, we were going home on April 6. Actually it was my birthday, and I had threatened the staff with their lives that we better be home by then. And home we arrived to balloons and décor adorning are yard. We were so happy to have you home. . . even at 3am the next morning when I hadn’t even climbed in bed yet. We had already driven back to the hospital to get a NG feeding tube put in because his other one clogged and I was still putting all of your medical equipment and paperwork away. Not to mention trying not to have a heart attack when the monitors would beep.

However, just three days later we returned to the hospital. His lungs were just a little to wet and his diuretics needed a little more balancing. As we were getting readmitted to the unit two nurses were arguing over who got to take care of Ethan that night. It brought joy to my heart. He spent another two weeks getting everything worked out. And then we were home, for the best month of our lives. All four children under one roof. It was difficult to say the least, but with everyone’s continued love and support we survived and had many precious and tender moments with Ethan and the kids. Cannon was in heaven. He just wanted to love and play with all Ethan’s equipment. . . and Ethan too. I would take care of him and rock him all day long. Then Greg would come in from work in the afternoon and taking over the rocking job while I attempted to get stuff done.

One tradition I was grateful Ethan got to enjoy was shower time. Sorry to embarrass you Greg. But I know it was your favorite. After being home just over two weeks, Ethan got his trache out. His vocal chords were no longer paralyzed. He was finally in the clear to take a shower with Dad. Greg loved to get handed all of our babies in the shower. He would wash them and sing to them like it was the best thing in the world. Ethan, like our other children, absolutely loved it! Greg’s shower song is Outkast’s “So Fresh, So Clean”. Greg loved to help in all of Ethan’s care. He has always said he was going to spoil Ethan for being such a good baby and such a fighter. He did spoil him. With the best kind of spoiling. . . LOVE and ATTENTION. Ethan Greg Skidmore, you are named after a great man, a gentle giant, and your biggest fan. And Greg is so proud you share his name. I could not have lived these last 6 months without your dad either. Thank you babe.

We were also able to enjoy our other kids during that month because my mom had come to live with us in early May. We now had a third rocking partner. Grandma Stapley did as she always did. She rocked you constantly, held you tight, and played dress up with you!

Round two began June 2. Ethan looked so good going into surgery that day. He was smiling and being playful in the pre-op. Those were tender moments. After a long embrace he was wheeled off to the OR again for his second open heart surgery. He looked fabulous a week after surgery. He did have small pleural effusions and chest tubes. But other than that he was smiling, interacting, and playing with toys. I was so relieved. I proclaimed we had made it. . . We had made it through the worst. Little did I know it was the beginning of the end. Ethan began a rollercoaster ride that he could not get off of. His little body fought long, and hard. The prayers of family and friends and the tender loving of the staff helped us get through these times.

At almost two months into the journey we thought he was finally on the road to recovery. Then another slip down hill. He was reintubated and went into full fledged heart failure. The word we never thought we would hear so soon in the journey was being mentioned: Transplant (which would mean moving out of state). The pain sunk in that our little Ethan had so much more to endure. Greg and I were overwhelmed but quickly rallied again. As did the staff at St. Joseph’s. We were determined to be there for Ethan, but realized the journey ahead was still long. We appreciated our children, and how understanding they were to Ethan’s needs. But Greg and I realized we needed to give them a little more time and attention. We quickly settled into our new routine. We were in it for the long haul. Grandma Skidmore was going to be with Ethan Tuesdays and Thursdays so I could be home with the kids. During this transition I was overwhelmed with emotions. Not being there for every little thing with Ethan and the decisions about his care was hard. But it made my time with him that much sweeter when I was there.

My last night with Ethan I held him, sang to him, and gave him a bath. I got a little smirk out of him. And even better. I got the classic glare as I was washing his hair! Because that night I chose not just to do the sponge bath on his hair. But get his hair wet and lather his hair real well, til bubbles formed. Then I rinsed it out. Oh, that was a tender moment.

I would like to read a quote that Boyd K. Packer, of the quorum of the twelve apostles of our church, wrote to my cousin who has been struggling with her own child’s health.

"Remember this! The line 'And they lived happily ever after' is never written in the second act of a play. That line belongs in the third act, when the mysteries are solved and everything is put right..."Until you have a broad perspective of the eternal nature of the plan, you won't make much sense out of the inequities in life. Some are born with so little and others with so much. Some are born in poverty, with handicaps, with pain, with suffering. Some experience premature death, even innocent children. There are the brutal, unforgiving forces of nature and the brutality of man to man."Do not suppose that God willfully causes that which, for His own purposes, he permits. When you know the plan and the purpose of it all, even these things will manifest a loving Father in Heaven.”

I know that physical causes made Ethan’s heart spiral downward that night. But I also know a loving Heavenly Father and Ethan chose the time to have him exit this world. Swiftly and peacefully he entered the third act of his play. He has reached his happily ever after. We looked forward to being with him again. But for now Greg and I are just grateful for the six months he fought so hard, so that we could love and enjoy him.

I would like to close with a poem my aunt Kathy had:

Small as a jewel box is your casket.
And you, our smallest jewel,
Are treasured up to God within it.

We did not give you willingly
Nor did he snatch you from us.
I rather think the choosing was your own.

Or perhaps, we had planned together
In that other shining world
That you would come and make this hasty call,
Then hurry on

That you might light the lanterns on the way
So we could find the footing.
But we had forgotten.

I think you too, had forgot. . . for one brief time. . .
For you tried so hard,
But God remembered.

Go then, our little jewel,
Go back to God.
Tell Him we feel no bitterness at all,
With our own hands we offer you.

We have a treasure laid up in Heaven,
And where our treasure lies,
Our hearts will follow.

You are our surety laid up with God.
And we will come to you.
We will, we will.

Thank you for all of your love and support. And thank you Ethan. I love you.
Greg's Talk
Good morning Friends and Family, I am so glad to see all you here and am grateful for your sacrifice to come pay tribute to the life our son Ethan. I say our son because I fill he was as much a part your lives as he was a part of ours. Let me explain:

I can’t tell you how grateful I am for my lovely wife to be so diligent in keeping you all updated on Ethan’s journey through her blog. I would find myself reading its pages to see how my son was doing through the eyes of his caring mother.

Even though Ethan spent most of his life in a hospital bed, I can’t help but think what a great missionary he was through his story and his mother’s blog. I was amazed at the amount of hits his blog was getting and couldn’t help but think who are all these people following Ethan’s story? Through the comments left on the website, I found these people to be relatives, friends, friends of friends, and strangers. Throughout his life you all gave words of encouragement, and letting us know that Ethan was in your thoughts and prayers. I want you to know that those thoughts and prayers didn’t go unanswered. Ethan went through a lot in his little life. Two open heart surgeries, a thoracic duct ligation, intubations, tracheotomy, countless needle pricks, medicine injections, medicine withdraws, fevers, etc. I just want you to know that he could not have endured as long as he did If it wasn’t for your faith and prayers. I can tell you that I am most grateful because those were probably the best six months of my life, in-where I was touched by one of heavenly fathers most precious. His little life, while short, will have a lasting affect on mine and my families. Through his bravery, persistence and courage, He was able to touch many by the spirit. I know for myself, he has made me a better person, helping me better understand the attributes of charity, service, hope, and strengthening my faith in the gospel. He has taught me to hold close those precious tender moments we have with our children. Through his life, he has brought our family closer together. This little soul has done so much for me. There’s a quote from Joseph Smith I’d like to read:

Death is almost always traumatic. We consider the experience a pivotal point in our family’s life. We are not yet immune to pain, but we have discovered reservoirs of strength within our family that we were oblivious to before. We know that life is a mixture of bitter and sweet. But despair is never the answer; hope is. Increased compassion for others, stronger family unity, dependence upon the Lord—all can be rewarding by-products of the intense experiences surrounding the death of a loved one.

I am going to miss his big beautiful blue eyes, handsome face, and his mom’s favorite, his eyelashes. Ethan, around the hospital staff was known for his facial expressions. Because he did not have a voice for most of his life, he was great communicator through his face. He had the sweetest and most tender powtty face. The times I would see it most is when the nurses would take his temperature or listen to his chest. I’m going to miss his beautiful face. Ethan also liked to hold hands. If you put anything else in his hands he would drop it, but he was always content on holding your finger. I loved holding Ethan’s hands.

Even though it was getting hard and old going to the hospital everyday, it was without a doubt the best part of my day because it was time spent with my son Ethan.

(I would like to take this time to especially thank Ethan’s Doctors, nurses, and hospital staff. For taking good care of my boy when family was not around and making the hospital feel a home away from home as much as possible. And I can tell you Ethan was eternally grateful.)

Before my closing testimony, there’s a poem I would like to read that gives good insight on how I feel the night of Ethan’s passing from his perspective:

Guess What Mommy & Daddy?
Guess what mommy & daddy,Heaven is great.Just like you said,There's not much longer to wait.
Guess what mommy & daddy,I have a guardian angel who comes at night.I told him I wanted to go,But the times not right.
Guess what mommy & daddy,My angel came this morning.While you were still in bed,He came with a warning.
Guess what mommy & daddy,When you were finally out of sight,I told my angel,The time is just right.
Guess what mommy & daddy,When you still didn't know I was gone,My angel put his hand in mine,And I was no longer sick, I felt so happy & fine.
Guess what mommy & daddy,When the hospital called, I saw you crying from above.I saw daddy & how scared he was,And I knew how much that I was loved.
Guess what mommy & daddy,On the way to the hospital I heard you pray,Don't take him, I'm not ready yetI know you don't want God to take me away.
Guess what mommy & daddy,I saw you walk into the Hospital, and ask is he gone.I saw the look on your face when the nurse said yes!It looked like you'd never go on.
Guess what mommy & daddy,I seen you holding me tight.I kissed you good-bye with my love,And tried to tell you that I was alright.
Guess what mommy & daddy,There's no more pain,You can go on with your life,And not feel so drained.
Guess what mommy & daddy,I'll watch you all your days through.And be like your guardian angel,Just because, I LOVE YOU!!
Joseph Smith Said the following concerning infants:
“We have again the warning voice sounded in our midst, which shows the uncertainty of human life; and in my leisure moments I have meditated upon the subject, and asked the question, why it is that infants, innocent children, are taken away from us, especially those that seem to be the most intelligent and interesting. The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth; therefore, if rightly considered, instead of mourning we have reason to rejoice as they are delivered from evil, and we shall soon have them again. …
Dad's Testimony
Grandma Skidmore's Talk

· Some of the most precious & important prayers ever given are the prayers of a Mother for her child. I have used this important blessing many times in my life. Maybe, the second most precious prayer is the one offered by a Grandmother. There is not a day goes by that I don’t pray for blessings over my children, and grandchildren. The Savior said: Pray always & I will pour my spirit upon you, and great shall be your blessings.

· In the last 6 months I have never prayed harder in my whole life. I love Pres. David O McKay’s definition of prayer: “ Prayer is more than words- Prayer is the yearning of a loving heart in tune with the infinite. It is a message of the soul sent directly to a living Father – the language is not mere words. But Humble thought”

· Even before baby Ethan was born I prayed that miracles would happen and he could be born with a whole heart. A miracle happened - but it didn’t change Ethan’s heart - it changed my heart and hundreds of others who knew or read of his roller coaster ride of joys & sorrows in his battle for life. So many prayers were offered in his and Greg & Heidi’s behalf. Our family will be eternally grateful.

· One of my favorite stories in the Book of Mormon is when the resurrected Savior asks that: the Nephite little children be brought unto him:

· “And..when they had knelt upon the ground,…he himself also knelt..: and behold he prayed unto the Father and the things which he prayed cannot be written,.. so great and marvelous were the things.. And when Jesus had made an end of praying…he arose and wept…and he took their little children, one by one, and blessed them, and again prayed unto the Father for them.

· And Jesus said unto them: Behold your little ones. And they cast their eyes toward heaven, and they saw the heavens open, and they saw angels descending it were in a midst of fire: and they came down and encircled those little ones about, and they were encircled about with fire: and the angels did minister into them” (3 Nephi 17)

· I know Ethan had Angels watching over him. Elder Holland said: “In times of special need Heavenly Father sends angels, divine messengers, to bless his children, to reassure them that heaven is always very close and that His help is always very near. Seen or Unseen they are always near.

· Ethan not only had heavenly angels - but also earthly ones. His mother and father watched over him day and night at the hospital. Family, friends gave loving service and doctors & nurses would comfort him in his struggle for life.

· It was my special time to spend with Ethan every Tues.& Thurs. It would take almost 40 minutes to get to St Joe’s Hospital from my house. Plenty of time to pray in my heart asking: “How could I help bless Ethan today?” It was a week ago last Thurs. I had a most wonderful day with him.

· I always would have to check in with the receptionist before I could go back to the ICU. I would tell her,” today is my Date Day with Ethan.” She would give me my badge that said, “Visitor” and I would secretly think (I AM NOT JUST A VISITOR I AM ETHANS GRANDMOTHER!) As I’m walking down the hall I descreetly put the visitor badge in my purse.

· When I entered into Ethans room the first thing I did was walk to the crib to see if he was awake. There he was just wide eyed looking around the room taking it all in. I quickly looked at the monitor to see how all his numbers were doing. His heat rate, oxygen levels, and his temperature. I talked to him and said: “ pretty good Ethan but we can do better”. I was glad to see they had changed his Art line to his foot so I could hold his little hand again. One of my favorite things to do. What a wonderful morning we had as I shared with him some of his musical toys & beanie babies. I even got to sing to him my special Grandma song of: “ I love you a Bushel & a Peck.” Although, I didn’t quite get to finish it because the nurse walked in and I didn’t want her to think I was too crazy.

· Heidi then text me to look and see if his bottom teeth had broken through and the nurse said they hadn’t. We changed all his bedding and I was excited to use the little blue quilt with stars on it that my sister and I had made for him. He looked beautiful with all the color.around him. I loved how Patricia, the nurse took care of him that day. In the afternoon she tried to keep everyone out of the room so he could sleep.

· About 4 O’clock Greg came to take over but I didn’t want to leave. The nurse discovered the tooth had broken through and we were celebrating . Greg asked me if I would like to hold him ( as Heidi had held him the day before) I said: I’d love to.
· It had been a long time since I had been able to hold him. He slept in my arms for over an hour.
· Little did I know what a wonderful gift that was for me. Before I went to bed that night I knelt down on my knees to pray & thank Heavenly Father for the tender mercies of the day.
· I will never forget the special spirit that was there. What a blessing it was for me to spend this time with Ethan!
· Pres. Monson has said: The passport to peace is prayer. The feelings of the heart humbly expressed provide the peace we seek.
· How thankful I am for the gospel in my life. For the Atoning sacrifice of my Savior & that through him we may all have eternal life. I know I will see Ethan again. I love him. In the name of Jesus Christ , Amen.


The Clinkscales Family said...

I am so sorry for your loss. I found you through Owen Simmon's blog. What a beautiful tribute to your precious son. I will certainly say a prayer for you and your family. May peace surround you during this time.
Catherine Clinkscales
mom to Cain (HRHS)

Meredith said...

thanks for sharing all of that. It was wonderful to read. Again, Im so sorry for what you guys are going though.

Melodie said...

I can't stop crying. I was there when the 3 of you read these and I wept then, and I weep now. Thank you for posting this. Such beautiful tributes to a precious little baby.

Ivannape said...

I just wanted to tell you How much I have loved getting to know Ethan and your family these last few months. You guys were truells an inspiration for me and my family. I loved reading the talks they were completely amazing. The tears just continued to flow but I felt a great Peace and it seemed like such a beautiful day. I will continue to pray for your sweet family. What a great missionary he has been and a True super Hero lots of love Pena Family

Kim Butt said...

Thank you so much for typing this up - I feel like I was able to be there in a way. You both are amazing examples of love & patience! I admire your strength in being able to share these thoughts with us - thanks again.

The Simmons Family said...

Thank you for sharing those talks! Even though I am a tearful mess, I loved reading them. The poem in Greg's talk sent me over the edge. :)

I can't wait to see the book you have printed of the blog. I would love to meet you and Greg sometime!

Thinking of you often!

Anonymous said...

No words. Crying so hard I had to close my office door.

Bless you for your courage and deep love of your son.


Big Momma said...

Since I spent the time reading this entire post, I figured I might as well take the time to post a comment. :)

Although Ethan's mortal life is over, his spirit and mortal "story" continues to inspire [us]. Your family will always be in our prayers. Your heaven has gotten better because you know who is there waiting for you. What a glorious day it will be when, one day, the veil lifts and you can wrap your arms around his perfect body and never have to let go!

Martin said...

I am so sorry for your loss.thank you for sharing all of ethan story to us,
GOD BLESS u and your family.
melody encinas
(mikaela mom)

Fab4 said...

God bless Ethan and all that he has accomplish in such a short time. He was an amazing baby. You're so bless of having him as part of your family. Thanks for sharing his journey with us.