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Saturday, August 22, 2015

Shattered Expectations

We were expecting our happily ever after...our fairy tail ending some would call it. After all we have been through-the death of our daughter at 24 weeks during our first pregnancy, three first trimester miscarriages, a failed IVF cycle using my own eggs with PGD-we thought we finally hit the lotto when we conceived our son through my sister's donor eggs. While there were issues of concern throughout my pregnancy, none of these issues affected our son. He proved to us and to the world that he wanted to be our rainbow baby. And after the best 9 months of my entire life...I really thought our storm was finally over. I thought we were finally going to catch the break that we deserve and were going to give birth to a healthy, beautiful boy who would come home from the hospital with us.

These expectations were shattered into a million pieces when Eli was born and immediately taken to the NICU where he was diagnosed with Epidermylosis Bullosa. Throughout our entire pregnancy I dreamed of giving birth to our son naturally....being the first one to hold him while he took his first breath and cried his first cry. However, our goal was to make sure that no matter what our son would be born safely-so if we needed to do a c-section that was okay too....and I was okay with my husband getting to be the first to hold our son instead of me. Eli was born safely by c-section, so that goal was accomplished. But my husband was unable to hold him the night he was born and didn't hold him until he was 3 days old because he was afraid he would hurt Eli due to his fragile skin. It broke my heart to not only see our son suffering but to see my husband suffering and grieving the loss of what we had hoped and planned for. I felt like I failed my husband once again....once again I was unable to give him the healthy baby that he expected after 9 months of growing what appeared to us and our OB staff as a healthy baby boy from the 20 ultrasounds that I had throughout my pregnancy.

Our NICU experience has been some of the most challenging and dark days of our lives. How do you possibly wrap your head around having a child with a rare skin disease that you had never heard of before and that is absolutely terrifying to read about? How do you accept that the healthy child you expected is in fact fragile and may not ever be like other "normal" kids? How do you process the fact that you've gotten pregnant on your own four times only to have those babies die from Down Syndrome, a disease that is not painful to the child, and therefore resorted to using donor eggs from a sibling only to have a child who will live a life of pain due to his skin being unable to bind itself to each other creating open wounds? Were we really that naive to expect that our luck had finally changed....that we would actually get our happily ever after?

Throughout my pregnancy I had imagined how happy we would be after our son was born. I imagined my relationship with my sister being strengthened even more by the miracle she helped us to create. But to make matters even more difficult, my sister has expressed feelings of regret for helping us to conceive Eli. The last few months of my pregnancy she had been distancing herself from us and appeared uncomfortable with me talking about the baby's progress during each ultrasound. I had hoped once Eli was born that this wedge she purposely was putting between us would be removed after seeing how happy she had made me and my husband. But due to Eli's condition and the challenges we will now face as a family-the wedge only got thicker. My sister came to the hospital after she got off work the night Eli was born but was unable to see him since he was getting his umbilical IV put in. After that, I didn't hear from her for over a week despite sending my family daily updates. This was just as devastating to me as trying to process and accept Eli's condition. It felt as if she did not care and did not want to be apart of our lives. I knew she was buying her house and moving into her new house and had a bachelorette party out of town in the days following Eli's birth so I did not expect that she would be able to visit him, but I expected her to want to know how all of us were doing and expected her emotional support more than anyone else's. When I finally reached out to her to find out if she was going to be able to visit this past week, I was bombarded with feelings she had been holding in for months about her role in helping us to build our family. She expressed feelings that I feared she would have from the beginning when we told her not to go through with this process unless she was sure she wanted to. She expressed feelings of guilt that things still didn't turn out the way it was supposed to for us. She expressed feeling as if she made a mistake that she can't take back and anger that she now has to live with this regret. My heart hurt deeply after hearing the way she felt....I never wanted her to feel the way that she does. I always wanted her to know how appreciative we are of her. I always wanted our bond as sisters to remain strong and to get even strong through all of this. I wanted her to be able to look at our son and be proud of herself for giving us such an amazing gift of life. I wanted her to be able to be comfortable being his auntie and wanted her to treat him no different than she would treat our other nieces and nephews. All of these expectations were shattered right along with our expectations of our healthy baby boy. I am hoping that after she got to meet Eli this week that she doesn't feel this way anymore but I know I can't change her feelings. It made me feel better to see her interact with Eli as if he were a normal, healthy, happy baby....but I don't know if it made her feel any better about her decision to help us create him.

Eli has been in the NICU for 2 weeks now. While so many of our expectations have been shattered...especially after learning about the disease that he was born with, this little boy has also exceeded our expectations of what he would be capable of with his disease. He continues to prove he is a fighter. He is the strongest, bravest little boy I've ever known. My love for him has not been stolen by the fear that this disease has put in me. He has made me into a stronger person as well. He has shown me the true meaning of unconditional love. Every day he impresses me with how his body is healing itself. And every day I fall more in love with his personality that I am getting to know so well.

In my next blog I will talk more about our NICU stay and Eli's medical issues that we are working to overcome daily. I will also explain more about his diagnosis and what this has meant for him so far in life and what it could mean for his future. The support we have received since Eli's birth has been overwhelmingly beautiful. God has shown has how kind this world really is and has restored my faith in humanity throughout our journey to becoming parents. I thank all of you for helping me get through my dark days with all your words of encouragement. You all really make me feel like a super mom....and some days I need that reminder that I have come this far in conquering the hurdles life has thrown at me so I can make it even further with the strength that our son gives me on a daily basis.


Rachel said...

Oh Lindsay, I read your post with tears streaming and a heavy heart for all you have been through... I cried for your shattered expectations, that you weren't able to hold your baby boy when he was born, the grief that you are all going through, your sister and how she is feeling, and you guys not being able to take your precious little Eli home yet...

But on the flipside my heart was opened and I smiled at the amazing parents you and Alex have blossomed into in such a short period of time. I smiled because of your beautiful son, who is just so brave, innocent and precious. He's a little hero Linsday...

I hope with all my heart that Eli's healing flourishes and you can take your baby home soon... You are a special soul with an amazing heart and ability to thrive, even in the most challenging of times. Know I am thinking of you all and sending so much love and healing light your way. Much love xoxo

Madge Terrell said...

Lindsay I hardly know you having only been around you as a teenager but I have to say I feel as if I have known you a long time
I have always liked you and thought you were a good friend to Lindsay. Anyway I have been with you thru your blog for a long time I was so happy for you and Alex as your pregnancy progressed and then so felt so sad for you guys especially Eli as he will deal with this disease his entire life. But as you know loving a child is the best gift and he is a sweetie. You and Alex are amazing and an inspiration to many.
You are both strong and courageous.
Eli is a blessed baby and will flourish because of his parents love not to mention all of your family and friends who support you
Take good care and know we are all praying for your family

Brianna said...

Continuing to hold you all in my heart. I'm thankful that you are having some positive and expected times with Eli, but sad that you are having to deal with EB. I'm sorry about your sister, too. Hopefully, with time, she can have a different perspective.

Anonymous said...

He is beautiful! I pray he has a mild form. I hadn't seen you on the IVF FB pages, and I was wondering about how you were.

Chantal Moreau said...

Our little guys were born the same day. We send our prayers and love and hope for healing for little Eli. Gentle hugs to Eli from Kolton and I. Xo