In February of 1999 our dream of another baby came true. We were pregnant! Dakota and I wrapped up the test and gave it to Kelly as an early birthday present.
My appointments went well, my measurements and weight were perfect. So at 21 weeks I asked for a sonogram, we wanted to know if we were having a boy or a girl. My Dr. said that was fine and we scheduled one for the following week.
I'll never forget that day, September 2, 1999. Kelly, Dakota, my mom, Kelly's mom and I all went to the appointment. So excited at the time I didn't notice that the sono techs were acting different, but looking back it's very clear they knew something was wrong right from the start. When they finished she laid her hand on my arm and quietly said "it's a boy." She then said "we need to show the pictures to the Dr., he'll probably want to come in and talk to you, but that's just routine." I remember thinking no one came in to talk to me when I had a sono with Dakota, but I still didn't expect what was to come.
The Dr. came in and said "I have scheduled an appointment with your OB in the morning." He said " there is something wrong with the baby's bones, they are much smaller than they should be." He continued by saying " the baby will die in utero or shortly after." Crying I asked if I could see my Dr right then? His response was " nothing is going to change in 24hrs, so you'll just have to wait, I'm sure he's gone home for the day." I had never met someone who was so cold hearted in my life. This was my son he was talking about, not a piece of trash. I left that office a completely different person than I was when I walked in. I had lost an innocence that I didn't know existed.
The next morning we met with my OB, who is wonderful. He explained to us that Dylan had Osteogenesis Imperfecta (Brittle Bone Disease) the most severe form of it. We cried, asked a few questions, like is he in pain, am I in any danger? He told us no, but that Dylan already had a few fractures. He wanted us to meet with a high risk Dr and a genetic specialist and we both agreed.
I remember us both questioning how this could happen, what did we do to deserve this, why did our precious baby have to have this happen to him? Why can teenagers, drug addicts, what seemed like everyone else have a healthy baby, but we couldn't?
Our family and our church families were amazing. Everyone prayed all the time for us and with us. I remember praying, pleading, begging God to Intervene and heal my sweet baby boy. I wanted God to show people through Dylan that prayer does work, that miracles happen.
A couple of weeks later we met with the "so called" high risk specialist. She was horrible and only wanted to talk about terminating the pregnancy. That was not an option for us. I left there feeling worse than when I arrived, which is pretty bad to put it mildly.
A few days later we met with the geneticist. He was so kind and answered questions about our future children. OI is normally a genetic disease. We knew that it was not on Kelly's side of the family, but I was adopted and didn't know anything about my birth parents. I asked if I needed to search for them to find out if OI was in either of their families? He kindly said no, for Dylan to have had it so severe he thought Kelly or I would have had to have it. They considered it to be a "mistake or mutation" at conception. I hated the word "mistake", but was glad to know that I wasn't the reason my baby was going to have this disease that everyone said he wouldn't survive.
As the mom I'm supposed to protect him and I couldn't do that no matter what I did. I couldn't do anything except pray and wait and I hated that feeling.
The next few months were emotional. We live in a small town where everyone knows everyone. I was always running into someone who would ask, when I was due or if it was a boy or a girl? Each time having to explain that Dylan was not expected to survive, but that we would NEVER give up hope.
I remember one time going into a store in the mall and the lady working asked me if I knew what I was having? I politely said a boy. She said " you have to see all the new baby stuff we just got in! We just turned around and walked out the door. I'd cry in every store that had baby stuff, I was supposed to be buying that stuff.
The crib was already up and stayed up. I never lost HOPE that God would heal my sweet baby boy. I don't know if that made things easier or not, it was just right for our family, seeing the crib ready for him gave me that extra bit of HOPE that I needed.
On December 7, 1999 (also Kelly's mom's birthday) Dylan Kelly was born via C-Section at 8:08 am weighing 4lbs 8oz and 17" long. Dylan was tiny, but so beautiful. He had the most amazing brown (topaz) eyes I had ever seen. Kelly and I got to see him and tell him that we loved him before they took him to the NICU. Our family and our Pastors were waiting in the hall to meet Dylan too. I remember pastor Steve saying the beautiful eyes were taking it all in. It was like he knew he had to see the world in a short time.
Dylan was hooked up to all sorts of machines, breathing machines, machines to make him more comfortable. We could see Dylan anytime we wanted and did as often as I could. We couldn't hold him, but could touch him and talk to him. We took lots of pictures and gave him an angel bear to watch over him when we were not there. The Drs. ran tons of tests and called all over the world to try and find someone who would try something for Dylan.
We prayed all the time for Dylan's healing, for just a little more time with our precious baby boy. Unfortunatly healing on earth was not in Dylan's story. Our hearts broke as we had to make the decision NO parent should ever have to make.
On December 11, 1999 just four days after we met our sweet boy for the first time, with the heaviest of hearts, Kelly and I let Dylan go home to Heaven with God. With our families and Pastor Steve by our side we said our final goodbye. I held Dylan for the first time on a pillow, so not to hurt him as he fell asleep in my arms and woke up in the arms of Jesus. Kelly held Dylan too, this is something I have struggled with. I feel as though I didn't let Kelly hold him long enough because I wanted him back. I never held Dylan off his pillow even after I knew he was in Heaven I was so afraid I would hurt him.
I think back to that day often wishing I could remember more and praying I could forget some. I wanted to change things I couldn't change. What could I have done different or could I have done more. Should we have waited 1 or 2 more days, would something have changed? Why wouldn't someone somewhere try something for Dylan? Then one day I received an email form a grief support group. The thing is, I had been receiving these emails for many months by this time and most of them I would just delete without reading them. I couldn't handle all the emotions they brought up daily. I just wanted to wake up from this horrible dream and have my whole family, both my boys. For some reason I decided to read one, for no reason I picked this one.
" In God's economy you can't go back and say, ' I should have done this, ' I should have done that,' or ' I didn't do this right,' because you did the best you could at the time that you did it. God knows your heart, and you can't live in a state of regret or wishing you had done something different. There has to be closure in that." (Barbara Johnson)
I so needed that. Of course it didn't just take those feelings away, but it give me comfort in knowing I did do what I thought was best for Dylan. That quote is still on my refrigerator today and I look at it often for all of life's situations.
Over the next few days funeral arrangements were made, flowers and songs were picked out. How are you supposed to do that for your child? They are supposed to bury me, I'm not supposed to bury them. How are you supposed to say goodbye to someone you just said hello to? How do you find that "new normal", what is "normal" now?
Dylan's service was beautiful, the flowers, the songs. So many people were there to support us during this time, even strangers asked if they could help in any way. We couldn't have been more thankful and grateful to everyone.
The next several weeks I was just numb. I didn't want to eat, I couldn't sleep and didn't want to see anyone. I wanted to stay in my house with all the shades pulled so no one would think I was home. I just wanted to be with Dylan. Don't get me wrong, I was very thankful that I had Dakota, but it didn't take away the pain of Dylan not being there too. I wanted to feel his skin on my skin, I wanted to see his first sweet smile. What would his laugh have sounded like? I just wanted to hear it.
Kelly and I had decided that we would not prevent us from getting pregnant again. We had longed for a baby for so long, and now so much more. No baby would ever replace Dylan. I found out again in February 2000 that I was again pregnant. Again we were excited and scared and didn't tell very many people. In April, on Easter Sunday I miscarried that baby (Taylor). I remember lying in the hospital saying I didn't think I could cry anymore. How could this happen again? Why? Once again we left the hospital with empty hearts and arms.
Much to our surprise we were again pregnant in June 2000. Scared we told only a few people that we knew would pray for us and this baby. Would this be the "Rainbow baby" that we had longed for? Yes, it would! Finally a healthy baby, a sibling for Dakota. It was very hard to fully enjoy my pregnancy. I was scared to death something would go wrong even though my Ob told me ALL the time "everything is going to be fine". I did treasure every moment, every time I got sick I called to tell Kelly. Crazy huh? Kelly and I wanted to make sure Dylan was a huge part of this baby's life. We found out at 16 weeks that we were having a little girl! We knew that her name would honor her big brother Dylan.
On February 21, 2001 I gave birth to Madylan Hope. Madylan's name is after Dylan and Hope is after the wonderful church family who supported us through every moment. She was perfect, tiny and a little bit early, but perfect! Healthy!!!! Madylan brought our family HOPE, a HOPE that we thought was lost for good. To say that Madylan was spoiled would be a complete understatement! I held her all the time, she never left my side. Dakota was excited and very helpful, we saw a new ray of HOPE in him too.
Three years later we were again blessed with our 2nd "Rainbow baby" another little girl Lilliah Brooke. Born on March 5, 2004. Again more HOPE. Was our family complete? No, it will never be complete here on Earth. My heart is full, full of love and HOPE. My heart will always have Dylan and Taylor in it. My heart will always have a hole that no matter how many kiddos I have it will never be a complete whole heart.
Life after Dylan is different, but I don't know what life would have been like with him here. I know it would have had more love, more laughter and well more craziness. I would have gladly taken the craziness he had to offer. People often ask me if it was easier to know about the OI before Dylan was born? Well, I really don't know. We did have time to learn all we could about the disease and prepare for what was to come, but I also think that we grieved twice. The first time when we heard the news that Dylan was not supposed to live and then again when our worst nightmare came true. I would say I just wish I never had to grieve at all.
Dylan would be 12 now. I often wonder what he would like? Would he have loved baseball and soccer like his big brother? I talk to him and pray for him everyday. Sometimes there is still anger. I just want answers that will never come. I have asked, begged God to let me dream about Dylan and I haven't had a dream in a long time. I do believe that God allowed me to see Dylan one time. It was Thanksgiving 2000 and we were at my dad's house for dinner. They had this huge Ottoman in their living room and it was covered with magazines. For a split second I saw a little blond haired Dylan banging his hands on the magazines. It was brief, but I know God was giving me the sign that I needed to know Dylan was healthy and growing in Heaven.
We have pictures all over our house of Dylan. Dylan is a part of our everyday life and is talked about to everyone. I know Dakota feels sadness that he doesn't have the brother he so longed for at our house. The brother to hang out with and play video games with. The girls talk about Dylan all the time and all of their friends know about their brother in Heaven.
We celebrate Dylan's birthday every year with a balloon and lantern launch at the cemetery. We sing "Happy Birthday" and watch the balloons float to Heaven. One year it had snowed a lot and we all decided to have a huge snowball fight! I'm sure Dylan watched from Heaven and laughed at his crazy family!
I guess I can say that over the years the pain lessens, but it never goes away. This is our "normal" we don't know any other way. I don't think that there is a right or wrong way to grieve and I believe with all my heart that you should never let anyone tell you "it's time to move on, or get over it". There is no getting over it. It isn't a condition, it's your child. Your whole heart has been shattered and will never be whole again. Talk about your baby. Tell the world about your son or daughter. If you're the friend of someone who has a child in Heaven, talk about their child to them, let them know how you remember them. It hurts more when someone just forgets or acts like nothing happened.
I HOPE Dylan's story helped you. I hope and pray that you will find peace and comfort in Jesus. I would love to hear from you, all I ask in return is that you are kind. Dylan is my son and no matter if you agree with our choices or not, be kind about our story.
Thank you for letting me share my sweet boy with you. God bless you and your family.
Love,
Courtney and family
What a strong person and great friend you are! Thank you for sharing this. I know God will use you and Dylan as a avenue of hope for many mommies of angels.
ReplyDeleteThank you Kacy. You have been a great friend also and know the pain of letting go to soon to someone you love.
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