Celebrating and remembering Ali on her 5th Birthday...

Today marks the 5th anniversary of Ali's birth. It really doesn't seem that long ago... until I look at the photos. The photos are honestly a bit hard to look at sometimes. In my mind Ali still looks the exactly the same as she did right before she got sick, its just everyone else that has changed so much since then. This is a bittersweet reminder how long ago it really has been already.

Children visiting after Ali was born 

February 2009

Last picture with all the children together before Ali died

Christmas 2010

Pool children today

February 2014

God blessed us with 27 months to cherish and care for this sweet girl. She brought such joy to our home. And so each February 9th we celebrate and remember this sweet gift God granted to us for a brief moment on this earth. Today we will eat birthday cake. Today we will share Ali memories. Today we will talk about Ali. And we will look forward to our reunion in heaven someday soon.

Birthday Cake today

Memories of Ali

I created and printed this photo book on Shutterfly 2 years ago to remember and celebrate Ali's birthday.  I didn't realize that I could actually share it online before, so I am sharing it here now in honor of Alegria's birthday tomorrow. Enjoy!  :)

Alegria Elizabeth - 2/9/09-5/18/11

I had written this post close to a year ago now, but continued to put off posting it as it is just too hard.  I thought I was ready to finish Ali's blog and this was to be my good-bye and final post.

I thought that I could say that although we shall never forget our precious Ali, this chapter in our lives has come to an end.  I intended to leave the blog open here for both my own memories and for any one who it might benefit from it in the future, but that I would be done writing here and instead take up writing again on my other blog But Joy Cometh.

But I am still not quite ready for all that.

Instead I decided to post this more as a summary of all that happened over the last five years.  A summary for both new friends and old...

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I would like to thank all of you who have supported us, prayed for us, rejoiced with us, and mourned with us throughout this journey. Thank you all for taking the time to care and to read this blog.  It has always been a tremendous encouragement to me.

This blog has been basically my journal of the life of our precious Alegria.  I spent 3 years with her here on this earth (the nine months I carried her in my womb plus the 27 months we carried her in our arms).

This is her story.  This is also the story of how God used her to teach me so much during that brief time with her.  And in closing, I would like to quickly recap the life of our sweet Alibaby.

We had no idea there were any genetic issues when Alegria was born.  As I had not had an ultrasound, it was a complete shock that Ali was born with a cleft lip and palate.  Within a few days we learned that she also was born with congenital heart defects (Bicuspid pulmonary valve, PDA, and PFO).  She also developed temporary but severe Pulmonary Hypertension.  She spent her first 10 days in the hospital having been transferred to the NICU at Ft. Wayne Lutheran.  Eventually we were discharged with very little knowledge of what the next 27 months would hold.  She had low muscle tone and she was unable to eat much by mouth.  She was fed via a tube her entire life (first a ng-tube and later via a g-tube).

By the time she was 3 months old, she had had 2 major apnea episodes.  Both requiring CPR.  It was diagnosed that Ali was born with a genetic condition called Trisomy 13. Thankfully by the time she was diagnosed with T13, she had already lived past most of the terrible medical statistics.

By her first birthday, things seemed to settle down significantly.  When she got sick, she got very sick.  But when she was healthy, she was so full of energy and life.  She was such a delightful and joyful little girl.  Her huge smile literally lit up the entire room.

She had been doing so well in the spring of 2011.  In the end a virus apparently attacked her heart after a bout with an upper respiratory infection.  She deteriorated rapidly and we said our final goodbyes on May 18, 2011.

We spent 27 months with Ali enjoying every minute.  She was such a blessing to our family!  And she is certainly missed.

The Lord giveth and the Lord taketh away.  Blessed be the name of the Lord.