Tuesday, November 30, 2010
I truly believe that one of the reasons we were given the blessing of having Austin was to prepare us for things that would came our way over the last 3 years. Through Austin, the Lord has shown us that He is mindful of us, and that He will take care of us.
I have wanted to introduce Austin to the blog for sometime, but haven’t been able to decide how to do it. At the time Alea was born, many would tell us that our family had been through so much. I must admit, even I had thoughts and feelings about how much Heavenly Father would continue to ask Jodi to bear. I did not want to add this perception to those who came to this blog, but did not know our story. I wanted to use this forum to create awareness for Alea and Down syndrome. I wanted to show people that Alea is as much a blessing to us as our other daughters have been.
With that being said, it is hard to share the complete walk with our angel, without including our angel that waits for us in heaven. One thing I do not want this blog to be, is a typical mommy (daddy in my case) blog. Jodi and I are both optimistic people, but that does not mean that challenges have not been hard. As they have been hard, they have unified our little family in a way that cannot be described. I am in awe of the spiritual maturity my older two girls have, and I credit that maturity to the lessons the Lord has taught them through our adversity.
I have decided to share a personal letter I sent to my family 3 weeks before Alea was born. We had no idea of the unique opportunity Alea was waiting to provide us with. The Lord did, however. As you can see from the letter I sent to close family and friends, He wanted us to know that He is God, and He is with us. The miracle you will read about did not make complete sense until Alea’s diagnosis was confirmed. Indeed I am grateful for His mindfulness of us.
Letter Written July 22, 2010:
I thought I would take a moment and share a tender mercy that we experienced this last week. As most of you know, Jodi and I lost our son Austin 2.5 years ago. Due to a lethal abnormality, he lived only 2 short hours after being born at 22 weeks. I recorded the details of this experience on my blog if you are interested [It can be found on this blog on the Angel Austin page].
At the time [of his passing], we decided not to bury him, and to have the hospital take care of his remains for us. Looking back, this has been a source of regret for both Jodi and I. It is definitely something we wish we could go back and do differently. This regret has increased since Jodi lost her dad and brothers in a plain crash last year. It weighed especially heavy on us since Memorial Day. We wanted a place we could go visit his remains and memorialize him. I don't think that this desire was just between Jodi, the girls, and I, as a few extended family members expressed these feelings after Memorial Day.
On Thursday of last week, the U of U hospital called. I am still not clear on the details of why, but they told Jodi that they still had Austin's remains. They have started a program where they would place him in a cemetery in SLC with a nice marker, or we could come get his remains and bury him where we wanted. We have decided to bury him with Jodi's dad and brothers.
What a blessing!! It has brought much joy to our household. We will be holding a graveside service for him in Idaho. Depending on what Jodi's Dr. says about her traveling it will either be next week, or about a month after the baby comes in August.
This has been a true testimony builder for me. I know that God loves each and everyone of us. I know he is mindful of our situations and that he knows how to teach us and humble us if we listen and do our best to follow him. I debated whether to share this over email, but I really wanted to share it with those of you that have supported us over the last few years.
It should be noted that Jodi was inspired to go to Idaho and have the service before she had the baby. If we had waited until after, Alea’s health would not have allowed us to do this until probably next spring. How grateful for a wife who listens to that still small voice. Happy Birthday son, we are thankful for all you are to us. We continue to work so that there will be no empty chairs in Heaven.
Below are some pictures from the service held 7/30/2010.
Saturday, November 27, 2010
A common thing we heard after Alea was born, was about her free pass into Heaven. I truly believe that kids with intellectual disabilities are guaranteed a spot in Heaven, but that spot is anything but free.
As I have learned more about Down syndrome, I am constantly reminded of my pre-Alea ignorance. I had no idea what these kids go through. As I have come to know more about families that have kids that have so many health issues that are due to their extra chromosome, I am in awe of the power of their spirits. In every case, these kids bring so much joy to their family as they set an unbelievable example of determination, endurance, and will power for the rest of us.
Along this walk I have encountered many little heroes earning their wings. There is the story of 6 year old Emma, who has diabetes and Celiac disease. She dances too! Stop and think about her story for a minute. Down syndrome, diabetes, or Celiac Disease are all life altering conditions by themselves. She has all 3! What bravery Emma shows as she deals with it. What an example of love her parents and siblings are to all, as they help Emma be her best. Although it has to be hard, I have never talked to her mother that she has not had a smile on her face. Emma is earning her wings.
Then there is Vada. An absolutely adorable baby girl. Over the last while, she has been experiencing frequent seizures. As I have followed her story, it is clear how stressful this is to her parents, yet they proceed forward with faith in God. Each day they face their new challenges head on hoping for the best for Vada as well as her other two siblings. Recently the seizures have been less frequent. It does not matter that her family attends a different religious affiliation than I do, their faith in God is undeniable and exemplary to me. I continue to pray for Vada and her family, and I would ask you to do the same. Vada is earning her wings.
These are just a two of the many examples of courage and faith that I have come across on this walk with our angel. As I type this inside of a sleep center, I am very aware that my challenges are minimal. Alea is currently hooked up to several wires as she tries to sleep so that the doctors can evaluate her O2 levels as she sleeps. It is not critical, just the doctors trying to make sure she is getting all the O2 she needs. Having been through a sleep study myself, I know it is not fun. Alea, however, is resilient and continues to bring a smile to my face as she deals with being poked and prodded with such bravery. I am glad she is my daughter and that her example is present daily in my life.
Here are some pictures of Alea earning her wings.
Monday, November 8, 2010
Monday, November 1, 2010
I apologize for my lack of posting. It has been a busy few weeks. Alea is growing more and more each day. It is amazing the spirit Alea brings to our home. This last week we did spend a few hours on Monday and Friday at Primary Childrens' Hospital. Alea had a fever both nights, and the Dr. sent us straight to the hospital. All tests came back negative and the fever left a few hours after it came. On Friday it left without even using Tylenol.
Sisters for Awareness
The Keena and EC both turned in video projects for this years PTA Reflections Contest. You can read more about the contest here. They both decided they wanted their projects to be about Down syndrome. As they had to do the work themselves, I couldn't be more proud of them. Take a look for yourself.
Here is what EC said about her project.
"I did it because my sister has Down syndrome and they make me smile. Kids with Down syndrome are more alike than different because they love us. I chose the song because it says to "make you feel my love". And because I had a warm feeling that song was the song I was looking for."
Here is what Keena said about her project.
"My project goes with the theme because the theme is Together We Can. My title to go with that theme is Together We Can Spread the Word to End the Word. I think it is important to help prevent the R-word. It makes people with learning disabilities feel disconnected with other people. My thoughts are if everyone took the pledge, I think that word would be long gone. I have a little sister who is 2 months old, that has Down syndrome. If she was called the R-word it would get her feelings hurt and my families feelings hurt. Help me spread the word to end the word by watching this video! I hope you enjoy the show!"
To take the pledge, please visit www.r-word.org . Let the girls know if you do, they are keeping track. So far they both got their classes to take the pledge, on their own.