Our Beautiful “Unexpected” Journey
Clint and I met when we were nineteen and twenty years old. This may sound so cliché, but we both knew that we were meant to be together after our first kiss! We dated for about six months before getting engaged. Some people thought we were crazy, but we knew we were just lucky! We had some challenges arise while we dated though. Myself, having two major knee surgeries, an emergency tonsillectomy, and a surgery on my stomach, and Clint, having his second major lung surgery (his left lung collapsed six times within a couple of years). We managed to make it through some pretty trying times. At that point, we had already seen the best and worst of each other, so we knew it had to be true love!! We married in August of 2007. Since then, let’s just say that we have had a few more challenges along the way.
It was not long after we got married, that I found out that I was dealing with infertility issues. It was hard to handle, seeing as I had dreamed of being a mother for as long as I can remember. Clint and I were told that we did not have much of a chance of conceiving, but that we could give IVF a try. We definitely (because of the medical debt that we already were paying off, and damaged credit) could not afford that right away. We decided, even though we knew our chances were pretty slim, to try fertility drugs first instead. Much to our surprise, we were able to conceive!! We were overjoyed with the news that we were expecting! I had my first doctor appointment at 8 weeks along. Everything seemed to go great. Just a short week after that appointment, I had a "scare" so to speak and rushed in to see my doctor for another ultrasound to make sure that everything was okay with our baby. It devastated me to hear that there were concerns with our baby's heart. From that point on, I was considered high risk, so they immediately referred me to a High Risk Pregnancy Specialist nearby.
My pregnancy went from being one of the best moments in my life, to unfortunately, being one of the most difficult. I had an extremely rough pregnancy. My husband and I went through months and months and months of hearing very concerning news about our child. We were seen very frequently throughout the entire pregnancy (having over fifty ultrasounds and other tests) to be able to allow the doctors to keep a very close eye on our baby and myself. There were many different concerns about the baby's size and limbs, digestive/intestinal tract, brain and heart, and we also had a few abnormal blood tests (just to name a few). All of these complications that the baby was having was all leading up to the possibility of him or her having some kind of chromosomal defect (they kept leaning towards a down syndrome situation, due to it being the most widely known defect). We had opted against having an amniocentesis done (which could have given us a better answer as far as the baby having an actual defect or not), because it did carry some level of a risk of miscarriage. Already being high risk, it was not worth it. This baby already meant more than the world to us. We knew at that point that it was not going to matter in the least bit whether our baby had something like, down syndrome, or not. We would love him or her unconditionally.
Even with as many times as we heard of the complications and concerns, we held strong to our faith; truly believing that our child was already in the palm of God's hand. We knew that He was going to take care of us. There was so much of us that truly believed that the doctors were worrying about nothing and that everything was going to be okay once the baby arrived.
On top of all of the physical, mental and emotional stress we were dealing with already, Clint ended up losing his full time job in the middle of all of this. I ended up fainting behind the wheel (at 29 weeks pregnant) and was hospitalized. To make a long story short, Clint was not able to make it to work because of this and was let go. Because of being high risk, I hadn’t been able to work the entire pregnancy, so we knew that financially, we were really going to suffer. We did the best we could do, and Clint did side jobs (while still working his part time job) for someone until he was able to find another full time job.
Well, I was able to carry our child to 36 weeks (much to a lot of people's surprise). I went into labor 4 weeks early and delivered our beautiful baby girl by C-Section (she was breech) on Tuesday, June 16, 2009 at 10:23pm. She weighed in at 4lbs. 8oz and was 17 inches long. We named her, Taleigha Karyce ((Ta Lee Ah - Ca Reese) (Karyce meaning, Grace, in Greek)). She initially got the "all-clear" to come back with my husband and I to my room from all of the hospital staff that was there during the delivery. Once back to the room, she started having issues with her blood sugar, and was also having issues eating. She wasn't able to get the "suck, swallow, breathe" coordination down in order to eat. We only got to enjoy our tiny miracle for a few short hours before she was placed in an incubator and taken down to the Neonatal Intensive Care Unit. That in itself is incredibly difficult. You sit there thinking that this should be a time of overwhelming joy and smiles... introductions to family and friends... constant staring at your sleeping newborn. Instead, you are left behind, in your own room to "rest" while your brand new daughter gets situated in the NICU. When we were finally able to go see her... It broke my heart as she lay there with tubes and IV'S all over her little body. I just wanted to cuddle her and tell her that everything was going to be okay.
I was released from the hospital on Saturday (4 days after her delivery). It was incredibly difficult to go home without our daughter. I was still feeling very sore and exhausted from the c-section, so I tried my hardest to rest. Sunday (which was Father’s Day), we got up early and went to church. After church my parents came over to my house, and we got some preemie clothes ready to take to the hospital! I started to feel very sick, however, because it was Father’s Day, my husband’s family and my family all decided to go out for brunch. We got to the restaurant and things took a huge turn for the worse. I felt like I couldn’t move without wanting to scream and cry. I was in excruciating pain. I took about 3 bites of food before making my way to the vehicle to sit and cry. I knew something was very wrong. This was NOT how a normal c-section recovery was supposed to be… I knew that much for sure. We headed to the hospital to see our daughter at that point. We were waiting to see her and I just couldn’t take any more. I ended up going to the Emergency Room. They initially diagnosed me with a uterine infection (which I did have because of the c-section). I was admitted to the hospital to receive 24-48 hours of IV antibiotics. The OB/GYN that was there at that time came to visit me and suggested that we get a CT Scan done; just to make sure that there was nothing else going on. Well, there definitely was. I had a FIFTEEN INCH in DIAMETER hematoma (blood clot) in my stomach muscle!!!!!! At that point, I literally could NOT move on my own. I couldn’t believe the amount of pain that I was in. I was told at that point that I would be re-admitted to the OB floor for at least another whole week. I couldn’t believe what was happening. I was now wheelchair bound and in the hospital. The only “up side” to that was that I was just down the hall from the NICU where my daughter was. That meant that I could visit her whenever I wanted to, as long as I was feeling up to it. The only thing I could do was sit and wait for this hematoma to be reabsorbed into my body and decrease in size.
Two days later, on Tuesday, June 23, 2009, my husband went to work, and my dad and sister-in-law sat at the hospital with me. I made my way up to the NICU and visited with my daughter. Her NICU doctor met me and told me that he had an update for Taleigha. He brought me into the usual “private” room that I used while I was there because it was easier for me to hold her sitting down in a reclining chair because of the hematoma. My dad and sister-in-law waited just outside of the room. The doctor just acted like he had a generalized update (which we had received many times before). I thought I was going to get an update on how her eating was going, weight gain, growth, etc. Instead, this doctor looked at me and said, “I’m sure you’ve noticed your daughters’ facial abnormalities…”! What?! Are you kidding me?! My daughter is perfect. There is nothing wrong with her face. I responded with a, “No…”. He continued on, “Well, Brittany, you do know that we did chromosomal testing on your daughter because of the concerns your doctor had during your pregnancy, right?!”. I had a quick “yes” reply for him. “Brittany, we’ve received the results from those tests. I am sorry to say that your daughter is missing part of her 5th chromosome. She has Cri Du Chat Syndrome. It means Cats Cry in French. It has a 1 in 50,000 chance of happening. I don’t know much about this, but your daughter will probably never walk or talk. She will probably never get above a five year olds’ thinking level, as she will have some level of mental retardation.” I stared. That’s all I could do. He then told me that our genetics counselor (who we had worked with during the pregnancy) would be meeting us in my hospital room the following day at 3pm. He got up, gave a quick pat on my shoulder and walked out of the room without another word. It was at that exact moment that I felt like I was going to die. My throat felt like it was closing, and through the streaming tears, I looked up to see my father looking in the room with concern written all over his face. My sister-in-law was right behind him. I was holding my daughter. Not just holding her, but really HOLDING ON. I was never going to let her go. I buried my face into the little crook of her neck and cried. I told her then that she was absolutely beautiful and perfect, and nothing could ever change the amount of love that I had for her, for the very second that she was born, she became my entire world.
I was in complete disbelief. Even through all of the “warnings” from the doctors saying that they believed something was wrong prenatally, my husband and I had such a faith that everything was going to be okay. So how could this be true?! That doctor never should have told me about her disability the way he did. I was ALONE. He not once asked where my husband was, so that he could tell us together. Not only that, but we found out later that the proper way something like that should have been handled was to hold a “care conference”. That way, the doctors, our genetic counselor and both my husband and I could have been together to get news like this. Especially after all we had been through during the entire pregnancy, and thus far, after delivery. I was already near rock bottom at that point. And now this!? I thought to myself, “how can one person handle everything that we are facing right now?”.
Taleigha was in the NICU for two weeks. It was at that point that my husband and I decided to “demand” that she be released. We knew that she didn’t have any other medical reasons she was there. She was having a difficult time eating, which, after doing our research on Cri Du Chat Syndrome (CDCS), we found out that she could have feeding difficulties the rest of her life. We felt that the right thing was for her to be home, with her parents, and have the consistency of the same people feeding her, and loving her, and give her comfort. After a bit of a “fight”, one of her NICU doctors agreed to have her released!! Thank God! Once she got home, we did realize that feedings were definitely going to be an area of struggle, but there wasn’t a single ounce of me that wasn’t willing to work through it with her.
Our days since then have been filled with the ongoing physical therapy, occupational therapy, speech therapy, dieticians, childhood education teachers, doctors appointments, specialty appointments (She sees a Pediatric Cardiologist as she had three heart defects at birth. She also sees an Orthopedist because she was diagnosed with bilateral hip dysplasia and was required to wear a “Rhino” hip brace for several months, and continues to have issues revolving around her hips to this day. She has also had to see specialists because of her feeding issues, which also included needed a swallow study done.), and much more. I could talk forever about all of the specific challenges and difficulties we have had to face over the course of Taleigha’s life. The list seems like it could go on forever. One big issue that we face every single day is in the sleeping department. We are struggling so much right now. They believe that she is dealing with a severe sleep disorder. Our nights are filled with heart wrenching screams that last for hours on end from Taleigha. Nothing comforts her. And so I sit, listening and hurting over the sound of my precious little girl struggling with Night Terrors/Confusional Arrousal. We are currently being referred to a Pulmonary and Sleep Medicine Clinic, in Milwaukee. We are hoping to find some kind of answers through a sleep study.
Some things that we rejoice the most about are the same things that others may take for granted. The littlest things can sometimes be the biggest milestones in our lives. I know that when you become a mother, you gain incredible responsibility. You wear many different “hats”, so to speak, throughout your life. You play a million different roles, each accommodating what your child needs you to be. Little did I know, however, that I was going to become a physical, speech, occupational and developmental therapist all day and all night long. I’ve become a nutritionist, an insurance expert, a nurse, and so much more, on top of all of the other “typical” roles that mothers take on. I gladly gave up other things in life to become those things for Taleigha, though. I have dedicated myself to her, so she can have the ability to reach her highest potential, because I know she has so much. And with as crazy, hectic, stressful, and downright exhausting it all can be at times, I don’t regret any of it one bit.
The last couple of years have been the utmost challenging for me, mentally, physically and emotionally. I feel completely drained. I am so beyond exhausted. I feel so bad for Taleigha as well. She has gone through so much in her 2 short years already. As a mother, it literally kills me to see her struggling. But, she is so strong and such a fighter. She has overcome so many obstacles. She is absolutely amazing. To be completely honest though, some days still seem so tough, where I worry about what her disability will mean for her life… what kind of affects it will have. There are other days when the disability never even enters my mind. Some days I think I just exhaust myself just by trying to stay positive about everything. She is doing so great with some things though, making a lot of progress in certain areas, I think. Even though she seems to be doing so well right now, I think that there is still a part of me that worries about her chances of walking, talking, etc. I know that no matter what happens, everything will be okay. I really do… deep down. But there is still that worry/fear that is in my heart. I think it’s there because I do love her so much and I want so badly for her to have the best life. I guess you could say, another part of it is because of my own selfish reason. I want to see her walk towards me to give me a hug. I want her to say “Mommy” and “Daddy” and “I love you” and so much more. But that is exactly what I mean by saying it’s almost exhausting just trying to stay positive about it all, because at the end of the day, the reality is… that it is possible that she may not be able to do those things. Only time will tell, so I need to be patient. And anyone who knows me, know that that is not one of my strong points.
Unless you’ve gone through something like dealing with a disability, I don’t think you can fully grasp what kind of an emotional toll it can take on you, whether it’s a severe disability or not. Maybe that’s not fair to say, but I know that I, personally, never understood it completely until I was here myself. I even worked, doing in home care for adults with disabilities, and didn’t understand how difficult things could be to experience this in my own personal life. There are so many feelings that you have to keep in check and so many feelings that you have to sort through. I think that to a certain degree, you can tell people that things are difficult, but to fully understand just how difficult it truly is… I think you’d just have to actually be here experiencing it all.
Taleigha has already proven so many people wrong. She is throwing certain statistics about CDCS out the window. She is defying some odds. So even though some things may be challenging right now, I know that with a lot of time and effort, love and support, work and determination, she is going to continue to make amazing progress. I thank the Dear Lord for holding us all in His hand and guiding us through this “unexpected” journey. Without Him, I know that none of us would have made is as far as we have. I pray that He continues to give us the strength, courage, patience, determination, and understanding that we need to keep facing every difficult situation head on. I completely admire my daughter. She has taught ME so much! She has become such an inspiration to me, because I look at her and I see this little itty-bitty person that has more strength, determination and courage than I think I’ve ever had myself. One of my favorite quotes is, “While we try to teach our children all about life, our children teach us what life is all about!” How amazing!
I found out that I was going to be facing a hysterectomy shortly after Taleigha was born. That was difficult for us to hear. We had always pictured ourselves having a bigger family. We decided, that even though we had (at times) a seemingly impossible situation already… just having a child that had a disability, that we really wanted to at least try for one more child before it was too late. We were able to conceive (again with the use of fertility drugs) when Taleigha was just six months old. There was a lot of worry that went along with that decision. After experiencing so many difficulties with the first pregnancy, it was hard not to.
My second pregnancy wasn’t particularly easy, but it definitely was not as emotionally draining as with our first. Baby was closely monitored for a while but he/she appeared to be very healthy throughout the entire pregnancy. I did go into pre-term labor a few times, but was able to carry to 39 weeks. I went into labor on October 21, 2010 and delivered our second gorgeous little girl, Taelyn Ryelle. She weighed 8lbs 5oz and was 19 inches long. She is a very healthy, amazing little girl. It has been so wonderful to have her in our lives. She is our “chunker-roo”! She is so very special to us. I think that she is going to be one amazing little sister! She already lights up when she sees Taleigha. I think that Taelyn is going to grow up appreciating the small things in life. She will experience diversity in her life, and be thankful for everything she does have. I think she is going to have a heart of gold, with such incredible compassion, understanding, and patience. I also believe that she is going to be able to help her sister in more ways than she will even understand!! Those two girls already have a very special connection.
I truly believe that we were hand picked to be parents for both of our little angels! We feel so unbelievably blessed and honored that God trusted us enough to give us Taleigha and Taelyn. Our two girls are the most important people in our lives. They are two of the best decisions that we have ever made!!
We don’t live an extravagant life… we don’t try to. We are happy with the little things in life. We truly cherish each other and the time we share. We always stick together and keep fighting every new challenge that we face in our lives. We have already made it through so much, why would we give up now? We know that our love and our faith keep us together in the difficult times. When we first started our life together, we said we knew we were lucky, and we know, even through everything we have faced, and continue to face, that we still are tremendously lucky. Clint and I share the kind of love that most people only dream about; we have two precious miracles for daughters; who fill us with extreme joy, happiness, and hope. All they have to do is flash their cheeky little grins to remind us that our lives are beyond perfect! We also have an amazing God that we know will never leave our side, always guiding us through each new journey. I don’t know about you, but we call that a pretty marvelous life.
