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Friday, September 16, 2016

Exceeded Expectations: A Recap of our Journey



I don't get to write much these days, being a parent and all.  My time is occupied focusing on the here and now and rarely do I have a moment to just sit and reflect on how or why I'm feeling the way I am.  I used to have all the time in the world to do that! Becoming a parent really changes things. It changes life.  It changes what is important to us and what is not.  It changes what we spend our time and energy on. And for me, that's Eli now. I am the mom of a special little boy who requires all of my love, attention, and energy.

But while I have a moment (or several moments over the course of the last two weeks), I want to share with you a recap of our journey to parenthood and what things have been like for us since the birth of our precious Eli.

Those of you who have followed along our journey, you know life has never been on the easy side for my husband and I.  Over the last several months I have been putting videos together (numerous videos because IMovie and You Tube have a 15 minute limit on home-made videos and, well-there was no way I could fit our life in a 15 minute video!).  These videos share the most intimate details of our journey.  Some video's are graphic because I just don't sugar coat anything.  This is real life.  This is what our life has looked like.  It's messy.  It's heartbreaking.  It's hopeful.  It's loving.  It's beautiful.

Someone recently asked me if I was going to write a blog about how becoming a parent has changed me spiritually.  My answer was "no, because I still feel I have a long way to go and sometimes I am still angry at God."  Again-I don't sugar coat. But what I will share about where I have been spiritually and where I am now is that I do believe when I am down on my knees screaming at God because my heart is in so much pain that he does hear me.  He doesn't always give me the answers that I want to hear-but somehow I have learned to just trust the journey (most of the time) he has been taking me on.  The songs in every one of these videos are Christian songs.  And something that really stood out to me when I was making these videos is that even these musicians who wrote and sing these songs have been broken by tragedy and glued back together by their faith.  So I try to remember that having faith in God doesn't mean life won't be hard, or even unbearable. It's knowing that he will always pick you back up and help you walk through the misery until some sun starts shining again.

Videos:

Our First 4 Pregnancies: https://www.youtube.com/watch?v=H-K_-OCAzcc
           Songs: I will Carry You-Selah (Perfect for describing my feelings of carrying Riley until she was stillborn. She knew nothing but the love I gave her.) Thy Will-Hilary Scott (Perfect for expressing how much it hurt to experience miscarriages after already losing a baby to stillbirth but how we have to trust that God knows more than we do and his plan for us is still good.)

Our IVF Cycles: https://www.youtube.com/watch?v=UfJ8iLye0gg
           Songs: Hope in Front of Me-Danny Gokey (Resorting to expensive IVF procedures were not what we planned but it's where God led us and so many people started rooting for us and helping us financially and spiritually through this part of our journey which gave us Hope to keep moving forward.) I'm Letting Go-Francesca Battistelli (Even more so, we never thought we would build a family using donor eggs but it turns out it was God's plan and we just had to let go and go with it.)

Our 5th Pregnancy: https://www.youtube.com/watch?v=RXeNvS4Vmf4
           Songs: What Faith Can Do-Kutless (It would have been easy to give up after 4 consecutive losses but we had faith that we would become parents and God would allow me to carry our child to birth. Miracles-Audio Adrenaline (Making it to 25 weeks and through the second trimester was a huge miracle! At 20 weeks we were informed our son's umbilical cord was not inserted into the placenta correctly which happens in 3% of all pregnancies and can lead to stillbirth-but God had his hands on this baby boy!) I Get to be The One-JJ Heller (Going into the third trimester was the greatest feeling on Earth.  We were so happy that we were blessed with this child who loved to kick and wiggle inside of me and couldn't wait until we could hold him!)

Eli's Birth and NICU Story:  https://www.youtube.com/watch?v=qF2ePQaQ9X4
            Songs: Guardian Angel-Leah West (This song brought me to tears every time I would hear it because of the immense love I felt for our son. As his mother, I want him to know nothing but love and protection from me.) Holding You-Matt Hammitt (Terrified doesn't even described the emotions we felt after our son was born with a life-threatening skin disease. We had to believe that God was not only holding us as we cried out for healing but holding our son as he battled intense pain from missing and blistered skin.) Blessings-Laura Story (So many emotions wrapped up into one song from doubt, anger, and acceptance of the trials we were facing with our new son.)

Eli Month ONE-FIVE: https://www.youtube.com/watch?v=G9WdU15C6yU
           Songs: All of Me-Matt Hammitt (Having a medically fragile child with a short life-expectancy was not suppose to be the ending of our story.  It was hard to push the fear of losing a living baby to the side, but our son deserved every bit of love we had in our hearts for him and he was worth every bit of our love too.) In My Arms-Plumb (We couldn't take away our son's disease, the pain it causes him, the things it prevents him from doing, but I want him to always feel safe in our arms and to know he is safe in the arms of Jesus too.)  Beautiful Offering-Big Daddy Weave (I don't want our life to just be broken.  I want our life to be a testament of God's love and want to be examples of how he carries us through the broken places when we can't carry ourselves.)

Eli Month SIX-NINE: https://www.youtube.com/watch?v=_L6fUwFMgWQ
           Songs: Trust in You-Lauren Daigle (When Eli's skin is breaking down and we get angry that God would cause a child so much pain, I try so hard to just trust him-that there is a purpose for this pain and that God will use this for the good somehow.) Love Heals Your Heart-Third Day (EB is more than heart breaking.  It makes us angry and causes us to feel powerless when we watch our child in pain.  But Eli's smile and laughter are the greatest joys we could ever feel and strip the anger out of our hearts by reminding us how much we love this little boy.) Mended-Matthew West (It has been so important for me to remember that when Eli gets new wounds, God isn't finished yet with his story.  Just because our miracle healing hasn't happened yet-it could still happen.  Some weeks he looks really good and we have to focus on those weeks where his skin in mended and not wounded.)

Eli Month TEN-TWELVE:  https://www.youtube.com/watch?v=6XCGw2v9QqE
           Songs: Beautiful, Beautiful-Francesca Battistelli (Eli makes our life beautiful, even through the clouds and rain that we feel due to his skin disease. I'm not sure why God entrusted us with such a fragile but amazing little boy.)  My Story-Big Daddy Weave (We met so many incredible children and adults with EB along with their families who battle this disease with them when we went to Texas in July for the EB Patient Care Conference. When I heard this song I couldn't help but to think about the story that these children and families have to tell.  They are stories of love, hope, and strength that can only come from God.) Do Life Big-Jaime Grace (Babies only turn ONE once, right?!? So do it big, especially when you have no idea how many birthdays you will get to celebrate with your child.) My Destiny-Katharine McPhee (I've always dreamed of being a mother, and I couldn't imagine my life without Eli. It was a long road to finally get to him and my husband never left my side no matter how hard it got for us. They are my destiny.)

A little over a year ago I wrote a blog on our Shattered Expectations after Eli was born. You can read it here: http://alexandlindsaysbabyquest.blogspot.com/2015/08/shattered-expectations.html . In this post I talked a lot about how we were expecting a healthy baby after such a great pregnancy and were shocked, heart-broken, and terrified when our son was born with a life-threatening skin disease. We saw pictures and read stories about how terrible this disease is and assumed our son would be in CONSTANT pain, every minute of his life.  We assumed he would never be able to interact with us or experience joyful moments with us.  We assumed he would never walk and would be bullied because of the way he looks and smells (wounds don't smell pretty).  I also wrote about my relationship with my sister and how I had hoped the birth of Eli was going to bring us closer together but it only tore us further apart.

Well, over a year later I can say that our shattered expectations have now been exceeded.  First of all, as you can see in the videos, Eli is not in CONSTANT pain.  Does he have pain-yes!! Does it sometimes make us scream at God-absolutely! But we also praise God for the moments of laughter and that adorable, contagious smile of his! Our son is so funny and so smart.  He learns things very quickly and he is exceptionally social.  I have been humbled by people who are kind to us in public and don't ask rude questions about his bandages and can just tell that we are loving parents to an incredible brave and strong little boy.  Eli has not needed a g-tube, even when we have wanted one out of those nights every couple of months where he screams because he is hungry but can't eat due to his mouth or throat having painful blisters.  He is a big boy! Weighing in the 85th-95th percentile since he was 4 months old.  He is determined, which makes us believe that although he hates it when we work on crawling he will learn to walk because he loves working on standing so much.  And about my sister-she is so happy with her new boyfriend who has been 100% supportive of her choice to donate her eggs to us unlike her previous boyfriend and daughter's father.  This has made everything so much better between us because she doesn't have someone telling her she made a mistake.  She also sees the relationship between me and Eli and sees that it is truly the relationship between a mommy and son and knows how much love I have for him and he has for me.  I have not brought up wanting to share with Eli that he came from my sister's eggs anymore, because now that he is here and he is completely mine-I don't know that it's even important to me. My sister has never wanted us to share that information with our kids and that's really okay with me now.  I've always referred to her as "Aunt Ashy" to Eli.  It took him awhile to warm up to her....between 3-5 months old Eli would scream every time she looked at him but now, for the most part, he is happy and excited when we visit his auntie.  And the relationship between Eli and my sister's daughter Raegan is incredible! My niece is a little mother hen to him. She is so gentle and reminds anyone who touches him how to hold him so they don't hurt him.  He absolutely adores his cousin Raegan too! The cutest thing was when she had my mom print off pictures of Eli so she could take them into school and show her friends! I told my sister that she will probably ask to take Eli in for Show-and-Tell so she can tell everything about her cousin with special skin! Their relationship truly makes my heart melt!

The next 6-9 months are going to be crucial in our future family planning.  We are fortunate to be the second EB family to be getting a microsilk bathtub for Eli which is apart of a 2 phase, $20,000 bathroom remodel turning our existing bathroom into a bandage changing bathroom paid for by the Ohio Home Care Waiver funds we recently discovered we had available to us and learned we could use on home modifications to meet our son's medical needs.  This tub is supposed to oxygenate the skin, improving wound healing time, reducing scarring and pain, and eliminating bacteria infections.  We are so excited to see how this tub works for Eli.  If we do not see good results we will be considering a Bone Marrow Transplant or other clinical trials that may be available to him at that time.  Currently none of these trials are a cure to EB.  They may slow down the progression of his disease any may help heal his chronic wounds but the cure to EB is yet to be found.  Researchers are working on Gene-Editing which is the most promising treatment on the horizon but likely will not be available for another 2-4 years.  Rather or not we feel it necessary to travel out of state for any of the clinical trials will determine our time frame for considering another child and the route we may go about doing that. There are many discussions to be had, logistics and finances to figure out, and options to consider.  Just know that our journey is not complete!


Much Love, 
The Monnier's 





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