Five Years Ago…

Five years ago on April 14th, I returned to the doctor for a repeat ultrasound. The week before I had went in due to some issues I was having. The sonographer did the typical anatomy ultrasound and we found out we were having a girl! I was almost 19 weeks pregnant at the time.  The doctor was not in that day(it was a Friday) and the sonographers mentioned something about the baby not being very cooperative and not being able to get everything they needed. So, I wasn’t necessary surprised when I got a call on Monday saying that I needed to come back in. I went in the next day by myself thinking that my baby girl just hadn’t cooperated the week before and the sonographers couldn’t see everything they needed to see. I figured it was no big deal. So I left work and headed to the doctor’s office.

Again, several sonographers looked at things and then the doctor came in. Within minutes, I was told that my baby girl’s eyes did not develop. I remember just trying to stay so strong and take it all in. I remember clearly asking what was the best case/worst case scenario. Mostly, I just remember hearing that they just really didn’t know if it was just her eyes or a whole lot more. The best case scenario I was given was that my baby girl would be blind. The worst case scenario was that she could have some type of chromosomal issue that could result in an extremely short life if she even lived at all. Bottom line, there just weren’t many answers or real explanation to what caused this to happen. After I took it all in or as much as I possibly could after being hit in the head with a huge brick(so it seemed), the sobbing began. I remember calling Mike and I couldn’t even talk. He couldn’t even understand me. He didn’t want me to drive but I had to a bit because we were far apart. We met in a parking lot and I told him I all knew. We just cried together for a long time.

So, I share this story because I remember thinking on that day that it is was the worst day of my life. It was a huge shock and obviously I went through a grieving process. Of course, we all have our ideas of what life is going to be like when we have children and then when you are faced with this type of situation you  realize that life is going to be so different from what you ever imagined. We did a lot of waiting from April 14th until September 10th when Faith was born. Then, Faith spent her first month in the NICU where many more issues were detected.   Today, we still don’t know it all but we have a better idea of  her many needs and medical issues.  A few days after we found out that our baby girl’s eyes did not develop, we decided to name her “Faith.” We knew that our faith in God would help us through the struggles and challenges and the name just seemed so fitting to the situation. Now, when I look back at April 14, 2009, instead of thinking of it as one of the worst days of my life I think of it as a life-changing day. Don’t get me wrong, it was probably the saddest and toughest day of my life so far. No parent wants to hear that their child is going to have struggles and daily challenges. However, it was the beginning of our new life raising a child with special needs. For the remainder of the pregnancy, we had to get educated, prepared, and get resources lined up in addition to the typical preparation for a new baby.

Before Faith was born, I had no idea of what it really takes to raise a child with special needs. Being a mom in general is the most amazing and challenging role I will most likely have in my life. Being a mom of a child with special needs brings additional challenges but also a great appreciation for many things. I am a work in progress. When it comes to being a mom, there are a few things that I’m pretty good at but there are many areas that I could use a lot of improvement in. I have good days, bad days, good moments and bad moments. I’m pretty sure most moms do! I try to keep things positive but I also keep it real. Sometimes I just wish that I could take Faith in the car and head to an appointment and not listen to her scream bloody murder because her tone and extension are so bad. Sometimes I wish it didn’t take so long to pack up everything Faith requires to go somewhere and that it was just easier in general to go places with her. Sometimes I wish I could go to the grocery store with both my children and get a full cart of groceries. Sometimes I wish people would just “get” my life.  Many days I just wonder-why can’t just one thing be easy today? I also wonder about the what if’s…

I try to not let these things take over my mind but sometimes I can’t help but wonder how different life would be if Faith was a healthy and typical developing 4.5 year old. I don’t think it makes me a bad mom or less accepting of my daughter. I feel I am human.  Faith is worth every struggle and frustrating moment. The hardest part is always seeing her struggle and often times feeling pretty helpless.

One of the biggest challenges for me is just focusing on being Faith’s mom. Balancing all the hats(nurse, therapist, personal assistant, appointment scheduler, advocate, researcher, etc.) I wear can be overwhelming and draining.   Sometimes I just want to be Faith’s mom. I strive to keep improving in this area but sometimes it seems quite impossible.

I believe the experiences I have had the past five years have helped me learn and grow in ways that wouldn’t have happened without the ups, downs, scares, and joys. I believe God never wastes a hurt and I have seen how Faith has touched the lives of so many people. At the same time, we have met so many amazing people that have touched our lives because of Faith. We are so grateful to all of Faith’s therapists, teachers, doctors, nurses, and so many staff members from many programs Faith is a part of who have gone out of their way to guide and support Faith and our family. We are grateful to the many people who have never even met Faith that pray for her and send love and encouragement to our family. We are truly grateful to our friends and family that support and help us. It truly does take a village.

Why does Faith have to struggle? What do we have to think about things and make decisions no parents should ever have to make? I don’t have the answers to these questions or many other questions that I often ask God myself. I probably won’t ever be able to answer these in this lifetime but I do believe that God has a special plan and purpose for Faith’s life. Mike and I are doing our best to seek out that purpose on a day to day basis and in all our decisions.

Faith has given me a different perspective on life. What is important and what really matters in life has changed for me. What Faith needs most each and everyday is our love. No matter what Faith can or cannot do or how hard life gets I want Faith to always feel how much she is loved. Life with our special little girl is our reality and know matter how draining things can be we will continue to pursue what is best for her and strive to give her the best life possible. As the parent of a child with special needs, I don’t take much for granite.  We celebrate even the smallest signs of progress!

I have so much respect for other parents that have older children that are ahead of us in this process. For those parents who now have adult children with special needs, you all are incredible. What an accomplishment! I also think about the parents that have lost children in the process. It breaks my heart for these parents who have gone through so much and then have to say good-bye. Words can’t say how my heart aches for these families that have lost children. What I can say about so many of the parents of children with special needs that I have encountered  is that they are incredible advocates for their children. I aspire to be the best advocate for Faith that I possibly can be and I am so fortunate to have such great resources to learn from. I am so thankful for my friends that have children with special needs that are always there to listen and be great resources. There is much comfort in knowing that someone else “gets” my  life and can support me through the good and bad times.

Five years ago, I had no idea what life would be like today. I am so thankful for all that Faith is and all that she has overcome. I thank God for her everyday and am so fortunate to have her in my life. Everyday is a gift.

Faith makes things possible, not easy!

Keeping the faith,