A Father's Heart

In honor of Father's Day, I am featuring a guest post by an incredible father - my husband Jeff! Please take a moment to read his inspiring blog written from his heart:

We had a plan that was creatively called "The 5 year plan"! We wanted to enjoy time together and establish ourselves. We stuck to the plan even with the pressures from family and friends pestering us with "when are you going to have a baby?!" We finally decided that it was time!  When we found out Alissa was pregnant, we just started laughing and hugged each other! Immediately she started thinking of names, I started thinking of all the practice plans I needed  to make for the little league teams I was going to be coaching! Over the next nine months we did what every expecting family does, bought the crib, baby clothes, argued over hanging my vintage picture of Wrigley Field in his room - I won that battle and it looks amazing, and I experienced sympathy weight gain! It was fun! For me at least! I was going to be a dad and I was excited! (Notice the Wrigley Field picture in the top right corner)

We were going in for a routine check two weeks before his due date. It ended up not being routine as they sent us straight to the hospital and told us that today was the day! We were scared. There was not enough fluid around him, once we got to the hospital they said he was fine but we had to get him out through an emergency C-section! The night before I was begging Alissa to pack her bag, she felt like she had time and didn’t listen to me! Now we were at the hospital and she was frantically making a list of everything she needed me to bring back! I didn’t mind though, I was right and she knew it! I could not wait to meet Reece! I was ready to be a dad!  

It was go time! Alissa was in the delivery room being prepped and I was in the recovery room. I was sitting there getting the camera ready, full of anxious energy, I couldn’t sit still. Finally they came and got me! I sat down next to Alissa and held her hand. She looked nervous. Just a few moments later they said “Dad, do you want to see?”  So I looked over the curtain and sat right back down! He was half way out! Alissa gave me a puzzled look! I can’t even watch ER without changing the channel! Seconds later we heard him crying. I stood up and snapped a few pictures and couldn’t believe he was finally here! That was when it hit me that I was responsible for this little guy! I know that was a little late in the game to realize, but I am a visual learner! They showed him to Alissa and when they took him away to clean him off she asked me if he was OK. I looked at her like she was crazy, I said “yeah, he’s fine”. She later told me that she knew the moment she saw him that he had Down syndrome. I did not.

They brought Reece and me into the recovery room, I gave him a bath and then the nurse laid him in a crib. “We think he has Down syndrome.” Immediately I felt like everyone in the room was staring at me to see my reaction. In that moment my world came to an abrupt STOP! All the excitement that I was feeling was gone. This little baby who I had been waiting for was NOT what I had envisioned. I didn’t look at anybody in the room, I just asked "why"? She explained that his eyes were slanted up and he had a single palmar crease in his hand. The palmar crease is a straight line that goes across his hand. All people with DS have this. I just said OK, and kept my head down.  She then asked if I wanted her to go tell my wife which I replied "no", I wanted to be with her when she dropped that bomb on her. There I was, in a room full of strangers, nobody talking to me and my world crashing all around me. This was not part of our 5 year plan. This happens to other people, not me. This could not be my baby. They rolled Alissa in and told her the news. She looked at me for comfort but I had none for her. We didn’t really say much to each other in that room.

Family started arriving at the hospital a few hours later; we wanted some time alone with Reece before visitors. Until this point I was holding it together. I met her parents in the café, I told them what the nurse had said and that Alissa was emotional. Truth is, we both were. I wanted to prepare them for what they were walking into. It wasn’t the excitement that we had all envisioned. Once they all came in, I went outside to call my family. As soon as I started talking I lost it. I was broken. What did I do to deserve this? After talking with my parents I stayed outside and started praying. “God, why? I can’t do this, please don’t let this be true”.  I felt guilty that this little baby who I had been so excited to meet was now the reason I was crushed. One of the major issues most people with Down syndrome deal with is heart problems. They had to do an echo cardiogram. At my lowest point, I thought that maybe he would have a major heart issue and if he passed then we could start over. As soon as that thought came in, I sent it back out. I know where that thought came from and I prayed that I would never think that again. I only share that because it shows just how hard this was for me. I could not believe that I would think that, the emotional ride that I was on was getting the best of me. I didn’t know what to do. They recommended we see a specialist; we took him to one a few weeks later. We are thankful that he has no heart condition; almost 50% of people with Down syndrome face heart issues.

We spent five long days at the hospital. Everyone was treating us like he had Down syndrome while we were holding out hope that he did not. We had not received his official karyotype test results. We refused to accept that he had Down syndrome until we saw the test. One visitor was too much for us to handle. A social worker came in with a folder that had pictures of kids with Down syndrome on it and as soon as we saw it, we both shut down. She talked to us and we just sat there I honestly don’t remember a word she said. All I could see was that folder. I was not a part of that world; I refused to think that he would be like those kids.  She admitted that a lot of families don’t even look at this folder and refuse to open it. We were one of those families. As soon as she left we knew we needed to get out of our room, just to avoid any more visitors like that.  We went to the garden area just for families on our floor. It was hot, but we didn’t care, we needed to get out and breathe.

You might just see a beautiful mom holding her baby, but I see the hurt and pain that we just went through moments before I took this picture.  Every time I see this picture, it reminds me of that moment and the feelings come back.

We were finally discharged from the hospital; I admit that I do miss the cafeteria food. Contrary to popular belief, it was good! Random thought, I know!  We were thankful that he had passed a few tests that they performed. His heart was good, his thyroid levels were fine, and he was feeding. We left the hospital still not knowing if he, in fact, did have DS. I think we both knew he did but we were hoping that they were wrong. It was an emotional ride home. Any parent will tell you that when you are going home with your first born child, you do not feel like you are ready to be on your own. Take that and multiply it by 1,000 and that’s how we felt. We had no idea how to raise a kid with special needs.

So now we were home and visitors were stopping by, friends and family were calling, and Facebook messages were coming in. Only a few people knew what was going on. We tried to hide it. I remember taking pictures of Reece and deleting them if I thought you could tell he had DS. I was still hurting.  Family and friends that knew were saying all the things that you tell people in our situation. "God chose you. Out of all the people that I know-you guys are the ones who can handle this. Reece was born into the perfect family." (Because my father-in-law and sister-in-law are special education teachers). I know everybody meant well, but what I really wanted to hear was: "this sucks, I am sorry, and I am mad with you." The next few weeks I was having some open and honest talks with God, but I felt that they were one sided. I would vent, I would tell him how I felt and I would get nothing in response. No peace of mind that everything was going to be OK, no comfort from reading His word, and no relief from the guilt I was feeling from the negative thoughts I had. To be honest, my thoughts were selfish, I was worried about what everybody would think, that people would stare at us. That we would be treated differently and that he would not be able to play sports and play on those little league teams that I was planning on coaching. My ego was one of the biggest hurdles I had to overcome. One day when I was driving to work complaining to God about how unfair this was he slapped me in the face! Not literally but this thought came to me, IT’S NOT ABOUT YOU! Reece is your son and he needs you! Lay down your pride! He finally had enough of my complaining. That was a turning point for me.

I knew what I needed to do but I was still overwhelmed. I spent countless sleepless nights reading about DS online and watching videos on YouTube. I struggled with going to work every day. I work with kids on a daily basis and they are all typical, excelling kids, and then I go home to a child with special needs. I saw all the things that these kids were doing and learning and I would get jealous that Reece would never be able to do them.  I now know that those feelings were wrong!

Another turning point came when I was listening to the radio and they read this poem by Russell Kelfer:

You are who you are for a reason.

You're part of an intricate plan.

You're a precious and perfect unique design,

Called God's special woman or man.

You look like you look for a reason.

Our God made no mistake.

He knit you together within the womb,

You're just what he wanted to make.

The parents you had were the ones he chose,

And no matter how you may feel,

They were custom designed with God's plan in mind,

And they bear the Master's seal.

No, that trauma you faced was not easy.

And God wept that it hurt you so;

But it was allowed to shape your heart

So that into his likeness you'd grow.

You are who you are for a reason,

You've been formed by the Master's rod.

You are who you are, beloved,

Because there is a God!

I have read this poem many times, and it has helped me through some tough moments. I know that Reece was meant to be with us. I don’t believe that God plans on giving people children with special needs, that doesn’t make sense, why would God allow someone to live a life with disabilities. What I do believe is that God is there for you to help you through the tough times. I found a verse that I applied to our life: Romans 8:18, "The pain you are feeling cannot compare to the joy that is coming." It is a simple verse but powerful.  I wish I could go back to the day Reece was born and tell myself that, in time, you will see that Reece is the biggest blessing you will ever receive. That you will love him unconditionally and that you will know what it really means to love someone else. I would say that it is important to go through what you went through though because you really do feel like you need to mourn the death of the child you thought you were going to have. In less than two years he has taught me so much. I love him and could not be more proud to be his dad!

I have since learned that the bomb they dropped on me in the hospital when they said they thought he had Down syndrome, was really not a bomb at all. It was just a part of Reece that makes him who he is! All the things that I thought he wouldn’t be able to do, all those hopes of little league coach of the year awards I was going to win are back on! DS is not a death sentence, it does not mean that Reece won’t be able to achieve great things; all it means is that he will achieve them in his time! Besides, he comes from a family that is NEVER on time for anything! Reece continues to amaze me with achieving new things all the time. This is a journey that I never planned on taking, that I wouldn’t have chosen on my own, but a journey I am glad that I am on. It is amazing to me how far we have come with this. To be honest, I forget that he has DS, he is just another boy that is fast approaching the terrible two's and he is a handful! Just ask the nursery workers at church.  If you are friends with me on Facebook you know that I love taking pictures of this kid! That I am unashamed of the DS and I proudly post pictures of him at a nauseating pace! I will be his biggest advocate and I will push him to achieve all that he wants to. I will never be a hurdle that he will have to overcome; I will be his biggest supporter. Reece is going to dream BIG! The latest go-to verse is this: Psalm 71:14, "As for me, I will always have hope; I will praise you more and more." I have hope that Reece will live a life full of joy, full of hope, full of love and happiness.  If you have met him then you already know he is full of love and joy and has a smile that is contagious. 

Parents, I know that there are times your children drive you nuts, and that you need a break from them. Trust me, I was one of those kids, just ask my mom. Be there for your kids; support them in what they love to do. They may teach you more than what you think is possible.  Don’t take for granted that you have a typically developing child. I know that Reece will achieve great things but I also know that there is going to be challenges down the road, we are going to be ready to face those challenges!  I am so grateful that I have Reece in my life. I pray that you and your children have the bond that I have with Reece! I can honestly say that I am OK with his diagnosis. Down syndrome is 3 copies of the 21^st chromosome; just remember that there is a gene for awesomeness, and Reece has 3 Copies!  

Thank you to Alissa, who allowed me to write this on her blog.  She is an amazing mother to Reece and is a huge reason why he is doing so well! Thank you for being a great momma, love you!