My name is Erica. I am a 38-year-old public school art teacher. I have been teaching for over 10 years and love my job. Unlike many mothers with children with disabilities, I have managed to maintain my career. I feel very blessed to work with over 500 students in our town in Minnesota.

I have been married since 2006. My husband, Scott, is an outside sales person for a title company. He is the most amazing father. He has stepped up, when he could have run away. I admire his strength for completely doing this with me day-to-day.

Our only son, Grant, was about 6 when his first serious round of self injury began. He has some level of intellectual disability, autism, and Avoidant Restrictive Feeding Intake Disorder (ArFID) which resulted in a g-tube getting surgically placed in August. Below is just a small piece of my life story. I am writing regularly at erica873.wixsite.com/grant and share updates on Facebook at www.facebook.com/deargrant if you would like to read more.

Amy is my friend and neighbor. She was kind enough to let me share my story here today. We are seeking donations for our medical trip. Grant is on a wait list for a hospital in Baltimore, Maryland, called Kennedy Krieger. Please watch the video at the end of this post, and check out my site for more details if you are in a position to help. Thank you.

I was cleaning up my art room, like I always do. Pandora was playing “Fire and Rain” by James Taylor. I know this song really well. I might be able to sing along without the lyrics without them in front of me. Can you hear it now?

” Won’t you look down upon me, Jesus …”

This song triggers a variety of emotions. I sing along. Just in my head. I don’t need someone to walk in my classroom and hear me.

Taylor sings …

“You’ve got to help me make a stand
You’ve just got to see me through another day
My body’s aching and my time is at hand
I won’t make it any other way”

I push the tears back. I want to let them flow at this moment, but I don’t and I won’t. I have let them flow before. I have had deep, ugly cries in the last six months. I have done this in front of my son. I have done it alone. But, I have never let myself cry like this in front of anyone else. This song is triggering this feeling, but I push it down.

I feel regret and anger when I have cried like this in front of Grant. It makes me cry more. My anger builds with every piece of this of this journey. The tears flow easily if he hurts me and I am not talking about emotional pain. I have never had a verbal argument with him. He is not considered “non-verbal,” but he is not functionally conversational either.

He has attacked my hair so many times I can’t count all of the incidences. Even in one day, he has come at me over 20 times. It’s like he is trying to remove chunks of my hair. I am trained in something called “CPI” so I know how to release his hands from head. I have to press on his knuckles. My scalp hurts after he comes after me. After a summer of hair pulls, I eventually sacrifice my long strands for a chin length “do.” I resent him in that moment at the hair salon. I tell myself it’s just hair. It is not me or who I am as a woman. It’s just hair. I eventually purchase hair turbans off of Amazon to protect my poor scalp. Cutting my hair doesn’t prove to be enough to keep him from hurting me.

He has tried to hurt my eyes. This is how it all started. He would push his fingers into my tear ducts. It happened so quickly. It’s hard to explain how anyone can get to your eyes so quickly.

Today he mostly kicks me. He hits me. He has bruised my eye area. He has scratched my skin and, more recently, he has learned how to head butt. This might be the worst new behavior. It comes out of nowhere. I can be putting on his diaper or he can be sitting on my lap. I might lean over to fix something and his head, with a helmet on, comes at my face so quickly. I can’t get out of the way. I bawl.

There was a day where he hit me so hard, I question if there is blood running down my face. I luck out, it’s only mucus. My nose feels broken regardless. It’s hard to hide my emotions. Tears flow easily. I want to hide. I can’t show him how upset I am in these moments.

This head butting issue really irritates me. On Halloween, his head hits my mouth. I thought he had loosened a tooth. I am not sure if he just caused me serious dental issues. I am hysterical. I grasp my face in horror. WHAT DID HE JUST DO!? How can a 9 year old be this violent? He stares at me as tears make my mascara drip black lines down my face. I am flushed. My lip is busted open this time. I have not overreacted. I might have my teeth still, but that was truly painful. I fall to the floor sobbing. He just stares at me. He might have said something like “mommy sad.” Yes, Grant. Sad is only the beginning of the emotions I feel in this moment.

Deep anger fills me. I don’t lash back. But, every cell in my body wants to fight. But, I can’t. There is no point. He doesn’t understand what he is doing. He just sees his mother crying. To him, this is interesting. So he will do it again. I have sealed that destiny with my outward emotions. But, I can’t stop in these times. I am getting hurt. I am hurt. I cry. I am so unbelievably tired of this.

Attacking me…this only a piece of what is happening in my home on a daily basis. Some days are worse. Some are better. I ask myself constantly “What is worse than this?”  I mean, I quite literally in my head run through a game called “What is worse than this situation?” We have to find answers. We have to move forward. I remind myself that we are lucky he is alive. We wait patiently for his turn at the hospital. I’ll do the best I can with each day as it comes. Maybe tomorrow will be better. Maybe. I will hold on to the hope I must keep in my heart for the three of us for a better and easier life.

Erica

It’s a joy to introduce you to Disa who’s sharing her unique journey to and through motherhood as part of our month-long guest post series, Special Mamas. Disa and I went to college together. We attended the same campus church, were student deacons together, and I’m sure we had some overlap of coursework as she was majoring in education and I was majoring in speech-language pathology. Disa is now a mom of FIVE, including a set of QUADRUPLETS! Today, she’s sharing the hidden blessings she’s found as a mama of quads. I think you’ll find her post interesting, enjoyable and easy to read. And yeah, there are a bunch of super cute big brother + quadruplets photos you won’t want to miss! Please extend a warm welcome to Disa.

As anyone will tell you, being a Mom is a blessing in so many ways. For the past six to seven years especially, I have been spending many days thinking about the hidden blessings that have occurred in my life. For me, some are very evident, and some took me a while to realize the blessing God was busy creating for me.

I am a daughter, sister, wife, mother of a nine-year-old son, six-year-old daughter and THREE six-year-old sons (QUADRUPLETS). I am a planner and organizer, and until the end of August I had been a stay at home mom for the past five years. Now I am back to work teaching 4th grade. I always knew I wanted to be a teacher. I didn’t think I could ever be a full-time stay at home mom, but I loved that a teacher offered some stay at home mom opportunities for me. I knew I wanted this long before I went to college or was even close to becoming a mom. I also knew I wanted more than two kids; four kids was what I thought would be perfect. 25+ years later, I am back to teaching again after being a stay at home mom for the past five years to care for my busy family. (I got my four children, just a little different from how I thought or planned!)

Finding out we were pregnant with quadruplets was an extreme shock and took us forever to fully grasp, maybe it still hasn’t sunk in. We knew having four babies at once was a HUGE blessing but seeing all of the blessings it would offer is still coming into view for us. Upon finding out this news, we were struck with worry. How would this affect our then three-year-old son? How would we financially handle this? How would we fit four more children in our modest three-bedroom home? How can we handle four babies, a three year old, and still have some form of a life without living close to any family? How would all of this affect us mentally and emotionally?

Our nearest family members were three plus hours away. We thought for sure we would need to be moving closer to family, but the thought of trying to sell and move while pregnant was too much for us. From the instant we told our families the news, they were by our sides. They made extra trips to visit, took care of our son, found extra baby things we would need, and prayed. They are family, we knew we could count on them regardless of the distance.

Early on in my pregnancy, I remember a good friend of mine coming and offering to help me in the classroom once a week right after she was done volunteering in her daughter’s classroom. My first instinct was to say no, but I distinctly remember a voice saying to me, you need to say yes, you are going to need a lot more help in the next few years, you better start saying yes now.

At school, my coworkers were amazing. Once they found out I needed to rest as much as possible, but needed to work as long as possible too, they started doing little things like walking my students to lunch and other places so I wouldn’t have to. They also started preparing food for me and my family twice a week starting in December and continued to bring dinners to us until the end of May. It was amazing to not have to worry so much about food and grocery shopping.

A good friend from church started a list of people in church who would be available to help when the babies come home from the hospital. For at least the first two years, I had helpers come spend time with us. It allowed me time to run errands, spend time with our older son uninterrupted, and just give me a break to save my sanity. Little did we know this would create some incredible bonds for all of us. Because of the connections we have made in the past six years, we have rooted ourselves in our community. We have gained some wonderful “extended” family. One of our helpers lost her 50-year-old son to an accident just before our babies were born. The time she was able to help hold and play with the babies was healing for her too. We are still close with all of them and they are still available to help when needed.

We knew I would need to stay home with the kids for several years, so now we are significantly cutting our income and more than doubling our family. Also, remember I thought I wasn’t cut out to be a stay at home mom, full time anyway. But, amongst this struggle we knew we needed to do something different. Our three-year-old son was really having a difficult time going to daycare the weeks and months before we found out we were pregnant with quads. We knew we needed to make some type of change, but we were not sure what that would be. In reality, I don’t think I would have ever considered staying at home with my children if I had only been pregnant with one baby that time around either. Funny how God works in these situations.

The more I stayed home with the kids, the more I realized how much I enjoyed it. I was there for all the little things. I remember calling my husband on more than one occasion to thank him for working so hard, so that I could stay home and be there for the little things. Like the few times my son forgot his tennis shoes and he didn’t want to miss gym as it was his favorite class. I was there to get them to him. I was able to make myself available to volunteer in his classroom every week. I was available for the little programs and events in the class. I could stay home to take care of sick kids without having to worry about missing work. I had the time to bake and cook for my family. We had time to do little projects, play games, just let the kids be kids and stay in their warm winter pajamas all day long as we weren’t going anywhere and it sure felt good on a cold winter day. I was able to get involved in our local MOPS group and meet other Mothers of Preschoolers. Being it was difficult to leave the house with five kids, I was able to have moms over for coffee and playdates. Connections I was able to make because I was at home. I didn’t realize these little things were so important to me, but as I stayed home I began to realize how much I liked doing all of those little things.

If there is any suggestion I can offer to mommas regardless of the number of children you have, remember: there can be hidden blessings in everyday life, just be open to watching for them and willing to say yes to any help that is offered to you. Above all, have faith. God will provide in ways you may not be ready to see yet. I am still working on this daily.

 

 

 

This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

It’s a joy to introduce you to Caroline who’s sharing her unique journey through infertility as part of our month-long guest post series, Special Mamas. Caroline is not a mama yet, but I can assure you she’s on her way to becoming one! Caroline and her husband, Mike, tried for years, met with fertility specialists, tried infertility treatments, and experienced more than one miscarriage. It’s been one roller coaster of a very long journey. Caroline and Mike have now decided to grow their family through adoption. Caroline’s words are thought provoking and heart warming, and prove that if we’re able to look beyond our circumstances, God is faithful to weave a beautiful story through our lives. Caroline is a very special woman, and will undoubtedly be one very special mama. Please extend a warm welcome to Caroline and her husband, Mike. (And be sure to click the link at the bottom of the post so you can follow their adoption Facebook page!)

Our story began in graduate school. We dated for a year and married six months later. During our engagement, we chatted about our future plans as a couple – what we wanted our family to look like, where we might live, etc. We were both pretty independent and wanted to have a solid foundation of at least two years of marriage before growing our family. We agreed that at least three children would be nice and that a warmer climate, like here in Virginia was ideal. The two year mark came and went – after another couple years it was time to face the facts, we needed to get some help. I remember the first appointment with the fertility specialist. Wow. That was something.  The doctor asked us, “Why do you think you are here?” As we began to share about the challenges we faced trying to conceive, he interrupted us by stating, “You are here because you are infertile and you want me to help you have a baby.” That was the first time we were told we are infertile. It was a hard diagnosis to stomach. At the time I was working for an adoption agency and was very familiar with “unexplained infertility.” It seemed to be the diagnosis for many whose adoption journey began with infertility. Although I was familiar with it, I never thought it would be something that we would have to deal with.

It was somewhat of a relief to get the ball rolling and start the testing process to better understand our “unexplained infertility.” The testing revealed some minor deficiencies that were easily corrected and we felt optimistic moving forward with medications and IUI (Intrauterine Insemination) procedures. We attempted several IUIs, all unsuccessful. We decided to take a break from infertility treatments and went to California to connect with good friends – time to relax. To our surprise, I became pregnant shortly thereafter.  I was in complete disbelief (I think I took about four tests to make sure each indicated a positive result). We were so excited, but a little skeptical because it had been so long and we weren’t sure what to expect. We only told close immediate family members because we were so early in the pregnancy. Since I was a high risk pregnancy situation, they asked me to get blood drawn every other day. Unfortunately my hCG levels began to drop and they indicated I should expect a miscarriage. I remember the day well. I was at work in the middle of typing up an adoptive home study when my phone rang. It was the nurse who told me the news. I don’t believe I ever felt such instant, gut wrenching grief. I instantly began to weep. My colleague heard me and approached my office. I could not even speak or communicate I just continued to sob. I called Mike and tried to get out the words and eventually did. He was calm and collected, but also very disappointed. One minute we were on cloud nine and the next we were in complete despair. How was this possible and where was God?

We decided to take a break and grieve and process before moving forward with an IUI procedure as previously planned. There were days we felt sadness, other days we felt anger, and some days we distracted ourselves in an effort to not feel. Thankfully, we are both trained clinicians and held each other accountable to communicate and deal with the loss and grief individually and together as a couple. Many conversations and prayers later, we felt it was a good time to move forward again. The IUIs and medications began and continued, to no avail. Each unsuccessful attempt began with a glimpse of hope and ended with many questions, doubts, and frustrations. It had been about five years of trying now and not only had I become older, but my body had taken a toll from all the medications and procedures. I was emotionally and physically worn out. So again, we decided to take a break from actively trying.

One day, I was reading Facebook and an ad popped up on the screen that indicated the early signs of pregnancy. Most days I would roll my eyes and ignore it, but for some reason, I opened the link. My cycle was a bit atypical so I thought maybe there is a possibility that I could be pregnant given I experienced some of the minor symptoms the article described. Sure enough, the pregnancy test was positive. I was in complete disbelief. How could this be? I wasn’t on any medications nor had we sought any treatment that month. I called my sister to share the news and my doubts that it was accurate. She suggested I get another test. I took four more tests and all indicated I was pregnant. I didn’t know whether to feel excited or to brace for grief. I shared the news with Mike who responded very excitedly, which was not typical of his personality. He is usually very relaxed and laid back, but he was overjoyed. We called the doctor and again went through blood testing. It was interesting timing given we were headed to a family beach vacation the following week. My hCG levels were increasing. I was so grateful. Then came the third test – the levels had dropped. We knew what to expect and it could not have been worse timing given the planned vacation. I was disappointed, but I think in the back of my mind, I had doubts from the beginning and thought it may end as the previous pregnancy – in a miscarriage. Mike, on the other hand, felt immense grief and sobbed. This was the first time I had seen him really grieve on a deep level. It was awful. We felt completely helpless. 

Soon after, Mike brought up the option of growing our family through adoption. I was ecstatic! Adoption has always been on my heart. At a young age, I watched the commercials for child sponsorship and would dream about adopting one day. During high school and college, I nannied for two children who were adopted. After graduate school, I worked with adoptive, expectant, and birth parents through my work as an adoption specialist. Adoption has always been an important part of my life. Although this was something Mike and I chatted about early on in our relationship, I knew first-hand the importance of both Mike and I approaching adoption as a viable option together. Mike’s suggestion was confirmation we were both ready to begin the adoption journey.

We were drawn to the beauty of adoption because it reflects the acceptance we both feel through the Gospel. However, the emotional cost associated with beginning a new journey came with new uncertainties. It came in waves, questioning if we had set out on another path with no answers – would we ever complete our family? We had many conversations together and with friends and family about our anxieties. So many prayers. It felt like we were leaving something we knew – albeit something that was unsuccessful – and venturing into new ground. God has been faithful to remind us of his goodness regardless of the outcome. We are excited and hopeful that at the right time God will bless us in the way He sees fit.

We wanted to share this story not as a therapy session for ourselves (maybe a little), but to hopefully help someone else feel normal. One of the challenging things during this process has been feeling “different” – having to deflect questions about why you don’t have any kids but you’ve been married for 8 years. It can play on your mind and lead to some untrue conclusions about your purpose. We hope that through our story we can help expose some lies about what it means to be “infertile” and offer hope that God is good regardless of that diagnosis.

We have created Facebook and Instagram pages to document our journey and help spread the word. If you or someone you know is considering adoption please message or email us with any questions or comments.

 

 

 

This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

Today, it’s a pleasure to introduce you to Jill who’s sharing her unique journey to and through motherhood as part of our month-long guest post series, Special Mamas. Jill is mom to one sweet boy and stepmom to one teenage girl. She grew up in a family in which “denial, shaming and blaming were key coping strategies,” and has since built “walls of protection around her heart.” When Jill became a mom, and especially when she became a stepmom, she was forced to face the pain of her past. One year ago, Jill had a revelation which helped her understand her mother better than ever before. Friends, this is one of those posts you just have to read to understand. Jill has a unique and important perspective to offer this year’s Special Mamas series. I met her at a writer’s conference in October 2014 and can attest to the fact that she is indeed warm, caring and vibrant. Please extend a warm welcome to Jill.

I didn’t have one of those childhoods that were all laughter and sunshine and pretty outfits. I had all of those things but my family was kind of the, umm, the different family. My mother didn’t really get along with other mothers. In fact she didn’t get along with many. My dad got along with everyone except his family. There was alcohol. There were drugs. There were mental and physical—taunts? Abuse? Anyway, things like those. I used to be able to talk about my family ad nauseam. Not to garner attention or sympathy (though sometimes I needed and indeed sought those), but more, in hindsight, to dissect and understand. Because my family doesn’t work out problems. We stuff, we avoid, we punish and discount the messenger.

I was the messenger for many years. I tried to get my family to talk. Really talk. I wanted to feel better. I wanted everyone to feel better. I didn’t know how to repair this situation so I’m sure I went about things very wrong. We needed a lot of help. More than I could take on. My parents and I tried a counseling session once, to address my out-of-control eating disorder. When the counselor suggested perhaps this issue of mine was also a family issue, my mother screamed and walked out of the session. Dad hung in there with me but soon thereafter I was told our insurance changed and I wasn’t allowed to see that counselor—and another ray of light faded.

I’m not writing any of this to blame my parents or shame anyone. I’m not saying my parents were all bad. I’m not saying my life was horror 24/7.  We had a nice house and some nice things. We were allowed to go to school and lived in America, which is a much better start than many kids. However, denial, shaming and blaming were key coping strategies in my family. We didn’t need those to get through the hard times.

I don’t wish this next part on anyone, I really don’t: What I finally had to do was to give up. I walked away. I stopped trying to fit in to this family that didn’t seem to like me the way I was. I stopped trying to seek peace and affirmation. No one chased after me and I never ran back home. That was 18 years ago. There have been calls and visits. Some of my family members had huge walls of protection around their hearts though, and now I have them around mine. Huge, protective barriers that likely never will come down.

The birth of my first baby gave us the chance to break down the walls, but the same patterns soon emerged and soon enough they were up again.

I could go on except that I’d be going to a mental place that doesn’t really help anyone. There is no resolution. There is no sturdy box and shiny bow for this gift of a broken family. A resolution? No, probably never. Complete peace in my heart? No to that, too. All sin and harm can be redeemed but there are scars.  Sometimes ugly ones—the kind that don’t fade, that you want to hide. The very, very best I will ever get is an ability to see that this is not all my fault. I was very sad in my kid years, very confused and emotional in my 20s and 30s and finally–very ill-equipped to become a mother myself in my 40s. 

Or so I thought.

You know why all of this is a gift? Let me tell you, dear readers. Through my pain, God provided me what I needed—and more. I quickly can see the brokenness and pain in adults and kids. Quite to my surprise, this makes me an excellent mama! I was sensitive and caring, and I knew what to do! Our baby boy came in 2007 and it has been a joy to be his competent, capable mother!

I was still very confused though about my family of origin. Why was there such a lack of warmth? If it came naturally to me, why didn’t it to others?

It wasn’t until my step-daughter moved in with me that I really began to heal and understand. My teenage step-daughter, did I mention that? Her own mother has mostly removed herself from Lilly’s life, so Lilly needed me to step in and fill her absent mom’s shoes. Her dad (my hubby Aaron) is wonderful, but she needed creativity, a shopping companion, someone to talk with about girl stuff—and boy stuff. She needed me to be available. She needed the warmth and encouragement of a mama who cared deeply about her.

From the first day I met Lilly many years ago I wanted to provide her with all of those things and I did!  When she moved in with us though, there were struggles.  I have an 8-year-old very active son to keep up with. I have a very bad back and I struggle with pain so bad it makes me want to cuss. Some days I want to have some wine or beer or whatever it is that will dull the pain just so I can keep my cussing at bay and be available and kind to everyone! But I don’t. And let me tell you it isn’t because I’m better or perfect or any of that. I stay away from that stuff only through the grace of God because I know what it’s like to have parents who indulged to excess.

A year ago, another gift! It hit me hard one night while my family needed me and I couldn’t summon my hurting body from bed.

This is what I remembered!  My mother also had a bad back!  She made different choices than I have but we both struggled with chronic pain and the demands of motherhood. In fact she had a tougher time than I did—she had three kiddos and one had some special needs. This is a gift that I didn’t expect step-parenting and God to provide me. I finally, truly understood the limitations of my parents. 

Will I ever tear down my walls? Not sure. Still praying. What I do know is that I’ll screw things up sometimes, but I have everything I need to face another day, to be a warm and loving mother even to the kids who “adopt” me as their mama. Even on my bad, bad pain days. Praising God for all these gifts and wishing you the same.

Jill B. Tucker is a commissioned painter, writer and book editor. She lives with her family near Indianapolis and she wants to connect with you at www.jillbtucker.com!

 

 

 

This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

It’s a great honor to introduce you to Dawn who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Dawn’s daughter, Taryn, has a rare genetic abnormality which has resulted in severe neurological issues, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. Dawn is a strong mama with a big, tender heart. She loves her daughter mightily and has fought to the ends of the earth advocating on her behalf. Dawn hopes that she is “a good enough mom for this precious girl.” I don’t know Dawn, but I can tell you with certainty that when I received this photograph of her with Taryn, I was convinced from the warmth in her eyes and her calm, but confident demeanor, that this is one amazing, incredible woman, one amazing, incredible mama. This is the first time Dawn is telling her story in written form. Thank you, Dawn, for sharing with us. May you be blessed in the sharing. 

Every year, Mother’s Day affects me differently. Some years I embrace the celebration and I love to do all the traditional things – brunch and time together with extended family (mainly my husband’s side) – and other times I struggle with the whole idea and just want low key and no pressure. I think it comes from the fact that I don’t have my own Mom to celebrate, or even the memories of a loving relationship with a Mom to reflect back on. As Mom to my beautiful daughter, Taryn, who has so many complicated medical conditions and intellectual delays, the rollercoaster we are on literally takes me up and down day after day. This year has been a hard year, and I find myself not wanting to celebrate much.

When my husband and I were ready to start a family, I felt excited at embracing the idea of being a Mom, and hopefully to be a more loving and caring one than I had. Our journey took quite a turn though. At 26 weeks gestation, we learned during the ultrasound that our baby was extremely small, had several heart defects and some sort of mass in her abdomen. I was also surprised to learn I had begun preterm labor which resulted in many visits to the ER, a lot of terbutaline shots to stop the labor and eventually an admission to the hospital at 34 weeks for complete bed rest and an emergency delivery at 35 weeks. I realize what a whirlwind it was between the time we found out about our baby’s issues in utero to the delivery that I think I was numb throughout that whole time. I’m not really sure I ever had a chance to process what was happening or what we were about to have before us.

Taryn Joy, our beautiful 3 pound 12 ounce bundle of Joy was here! Due to Taryn’s medical needs, she was assessed in the OR and I was able to see her for just a moment before they took her straight to the NICU. I had already made Chris promise to go with her so he could be there with her and of course report every single detail back to me. Once I was moved to recovery, it felt like forever before Chris returned with the Neonatologist for an update. Taryn was doing well, but they were waiting and watching a lot so we would know more as time went on. My room was three floors down from the NICU and the next morning I was so impatient to get up and see her. I hadn’t even had a chance to hold her yet and it felt like so much might have happened overnight. When I finally got up there, there was a moment of pause. She was so tiny and she had all these tubes and wires, I had no idea how to even pick her up or hold her. When the nurse got her out of the isolette and laid her in my arms for the first time, I felt love I never knew before. Having to learn how to feed her and do the temperature, weight, and diaper change became my new normal every three hours for the next few weeks. We were so thankful that her heart defects did not present as significant of an issue as they had expected, and no open heart surgery was needed. We were mainly focused on her feeding and gaining weight. After spending five weeks in the NICU, we were finally able to bring her home. Little did I know how scary and real it would soon become.

Without monitors to tell me she was ok, I found myself panicked all the time if she was breathing, if she was eating ok, if she was eating enough, if I was able to care for this tiny little person. I also realized how alone I felt. Sure, Chris was amazing. But this is the time new moms have their moms to turn to for advice, support or even just reassurance, and without that someone to turn to I began to doubt if I could be the mom this baby needed. Nobody showed me how to do this, how to be a Mom, much less a Mom to a baby who needs even more love and care than we were expecting. All the books I read throughout my pregnancy did not cover this scenario. This is where I had to turn to Faith and I had to work on my belief that I was given this child because I could do this, or at the very least I could learn how to do this.

I was so grateful I was able to be a stay at home mom because soon our lives became dictated by doctors’ appointments, therapies and surgeries. The first few years we focused on trying to address her medical needs all the while giving her the early interventions to get her development on track. We were heartbroken when it became clear her development was not catching up. We soon learned that there were more issues with Taryn’s brain structure and that her cognitive and developmental outlook were now in question. We intensified her physical therapy, occupational therapy and speech therapy, hoping we could help her learn whatever skills are possible. Despite the struggles, Taryn managed to surprise us along the way and we seized every opportunity to celebrate her achievements – her first steps at age three, trick or treating with neighborhood families and Taryn using a switch device to say “trick or treat,” to her having an augmentative communication device to make choices. When we think about how much is working against her medically, to see her grow, even if it’s small at times, is the Joy that reminds us of the beauty this child brings to the world.

As Taryn grew, we learned that her medical conditions were far greater than we ever could have imagined. We found that Taryn has a rare genetic abnormality which has resulted in severe neurological issues including epilepsy, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. We balance visits among 13 doctors, immunoglobulin IV treatments every 3 weeks, several major surgeries and more questions than answers. I have had to learn how to be a strong advocate for her, learning how to talk with medical professionals, navigate insurance companies, manage many medications, find the right school environment, all while trying to make sure I appreciate each precious moment and that in addition to being her caregiver, that I can also just be her Mom. Taryn will need full-time caregiving each and every day for the rest of her life, so we are constantly adjusting our world and life to ensure her needs are met and she has the best life possible.

When I sat down to write this post, it made me take a pause and realize just how much this beautiful angel has tapped into a part of my heart and soul I didn’t realize was there. Her laughter and the love she shows inspires and grows my heart day after day, and without question there is nothing I wouldn’t do for her. There is something so incredibly powerful about her ability to communicate without words. Her touch, her smile, and her beautiful eyes say so much.

I am often told that from the outside, I look like I have this all down and that I make this look easy. I think sometimes that makes it hard for those on the outside to really understand just how hard and challenging our world is. Most of the time I love that I am someone people count on to get things done, to organize everything and who can help problem solve, but sometimes, some days, I just can’t. It’s hard to feel warm and fuzzy all the time when you know in reality that given all the medical conditions my daughter faces, I will most likely have to say goodbye to her. With every new medical problem, that reality comes full force at me and I am reminded every day of the fragility before me. Each day I have to work so hard internally to put forth a strong, happy and resilient front so that we can continue to tackle the hardships before us, while also taking each and every moment of joy and grace that Taryn gives us. Let me just say how exhausting it is to constantly be switching between fear, sadness, anger, joy, gratitude and love every hour of every day. I struggle with having Faith that whatever God’s plan is, that it will be ok. I struggle with understanding how my own mother couldn’t find a love in me like I have with Taryn. And every day I hope that I am a good enough Mom for this precious girl.

But then, like I have most of my life, I pick myself up and I use my hurt, anger, fear and LOVE to drive me to do everything I can for Taryn. Because the truth is, Taryn has given me more in her 11 years than I ever could have imagined. She has given me purpose, taught me a level of patience and perseverance I had no idea I possessed, and opened my heart and soul up to a love I have never experienced. I watch her struggle every day to do basic functions and adapt because there are a lot of functions she cannot do. She endures pain beyond what we can imagine, and more medical interventions than most people do in ten lifetimes. Yet she is so happy and loving and she touches those around her in so many ways. I am constantly in awe of her. I truly am grateful to have her and for every moment, the good and the hard. My husband has been a huge blessing and support in his unwavering commitment to our family, his love for Taryn; his Faith is what I turn to in order to draw strength and comfort. I often wonder if God knew I needed Taryn more than she perhaps needed me, and I try to hold on to that feeling when I am faced with the worry of a life without Taryn.

So this Mothers Day, I relished in Taryn’s giggles, savored the hugs and kisses and embraced the rare day of calm.

 

 

 

This post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!