Fear Not

This post is one of the hardest for me to write so far. My precious Eli, my 3rd born Son…The one who gave me hell from almost the minute he came out of me. Anyone who has known me from the time Eli was born pretty much has a good idea of the highs and lows  our relationship has endured from the beginning. It was never easy with him but it has been the most rewarding relationship I could imagine…Thanks be to God for patience!!!

Eli came into the world on Sept 3rd 2005..knowing that Dr. D ( my favorite Dr.)was on call that day and I was past my due date just like I was with his brothers I asked him if he could induce me and he obliged. After a fairly uneventful labor, besides the pain from accepting no drugs (yes I am not smart) out he came.  All I remember seeing was that it was definitely another boy! Really?? Well I think I was disappointed for maybe a few minutes before I realized how truly blessed I was to have yet another beautiful baby boy! And I knew I would probably have one more anyway;) Right away I had this amazing bond with Eli and I remember calling Hut saying “this is going to be our easiest one yet” LOL!!!!!!! NOT!!!!!! Due to the fact that I HATE hospitals I tend to leave as soon as the 24 hours have passed from when the baby is born and this time was no different.

The best baby that I thought I had quickly started to show his other side..the head was spinning and it was out of control! I am sure you can relate to having a challenging child or one that makes you cry way too much! That was Eli… I am not one to hide my feelings as I am a very self honest person and boy oh boy did my friends and family hear about my “devil” child. I spent the first two years wearing out my vacuum, hairdryer & my Michael Buble cd (Birds Flying High, you know how I feel was Eli’s favorite) Not to mention the tears that were shed probably 5 out of 7 nights a week. As much as I was not a huge fan of his for quite sometime, he always had his own supporters. My sister-in-law (who was there when he was born…Love ya Meg) and my forever friend Holli…God bless them because they were always on Eli’s side!

Fast forward to shortly after Eli turned 3… I remember the tables started to turn, The child who never seemed comfortable in his own skin or happy to be here in this world, was finally starting to bond with me and I was truly grateful that we had finally gotten to where I wanted to be three years prior.

As time went on there always seemed to be moments that I felt something was not quite right with Eli and I shared this feeling with many…”I just know something is not right with him” I said that many times over, to anyone who wanted to listen. I remember taking him to our Doctor every few months, first for constipation, then just a feeling…of course nothing came up. He was challenging but no Autism, no ADD, no Diabetes…the list goes on and on. Eli was fine!  Yet my heart never let me believe that…it was always a bit heavy for Eli.

As Eli got older I really started to realize how special he was. I always made it a point to teach my kids the most important things in life such as think of others, have compassion, forgive, don’t judge and pray for others. Every night I say prayers with the kids and then we have “special prayers”  These are for all the sick people with either physically or spiritual issues. Friends who have lost children, neighbors and friends who need to keep cancer away. The kids have another “brother” Paul who is from Kenya and we were sponsoring him for quite sometime. Eli will pray for Paul every night that someday we can meet him and maybe he can come here with us. I did not have the heart to tell him that Paul is no longer in the program. Eli still prays and I cry… I really thought God put Paul in our life for a reason and Eli felt that too. Eli was so sad when his bus driver lost his job and he prayed like I have never seen him pray before for Tom. It broke my heart a little every night when I realized how sad he was and I remember how happy he was when he got the news that Tom got a new job! This kid is a gift!!

Having two big brothers there was always something to compare Eli to…not that Eric & Evan were amazing athletes but they could hold their own. Eli on the other hand was always a bit slower, could not kick as hard, seemed to tire quickly and definitely could not run as fast as his brothers (and speed is not the Vivian’s strong suit). He loves his video games and imaginary play and we always thought he was just going to be a bit different from Eric & Evan. Eli, God bless him has ALWAYS had to work so hard at everything that came natural to everyone else. I remember starting to teach him to ride a bike and how he wanted to do it so bad but it was like his brain would not allow him to do two things at one time…he could either steer or pedal but not both. I have lots of guilt about those days…yelling at him “Why can’t you just do it” “it’s so easy” When I look back I can see the pain in his eyes…the wanting so bad to do it but it just was not going to happen. I can’t let myself go there often because I beat myself up way too much!! I remember when Eli was at his Kindergarten field day at the end of the year, I went up to watch and as it was his turn to do the sac race that is when the tables turned for me and I knew something was wrong. As each child one by one got into his or her sac to run down to the cone and back, Eli was waiting for his turn, I watched as he was given the sac and it was very hard for him to get into. Something so simple as hopping down to the cone and back, Eli could not do.He could not hold the bag and hop… it just was not going to happen! I watched him struggle as the silent tears started to fall down my cheek realizing something was just not right. Thank God he did not get too frustrated and just took the bag off, ran with it in his hand and my tears went to laughter. This kid was one determined kid and boy do I love him so!! That is when my real journey started to find out what was wrong with him. Funny, I actually thought maybe it was a mild CP or something that a little Physical Therapy & Occupational therapy would help. Never in my wildest dreams did I think he had a fatal disease.

As I started this blog last night Eli was laying next to me in bed and had his precious arm wrapped around mine and his other under my arm…just holding on…that is why this is not finished until today. I just put the computer down and watched as he fell asleep holding on to me. A moment in time that 6 months ago I may have not paid too much attention to…now I am blessed to feel every finger as they tighten around me, every breath as he falls asleep takes on a new meaning. I pray I continue to appreciate every moment that I am given with Eli (and of course all my kids) and hopefully I will be able to watch him grow into the amazing person that I know he will become.

~ by Rebecca on November 11, 2012.

Posted in Diagnosed, Pre MLD