Hi everyone! My name is Kaitlin Lupo and I’m so excited to be a guest on the CVF blog and share my story with you. Sarah and I met back in college as dance majors over 10 years ago. Through college, professional dance careers, marriage, and now babies I have been thankful for our friendship. 

       Today I’m going to share with you a topic that is very close to me and something that I am still navigating; being a momma of a special needs kid. In sharing I hope that those in my shoes will find encouragement, and those not in my shoes will give their special needs mama friends an extra hug today. 

        In December of 2016 my husband and I became pregnant with our first child. We were over the moon excited and also nervous about becoming parents. All was going well, or so we thought, until we had our first ultrasound. Normally that's supposed to be an exciting time to see your baby for the first time and find out the gender so you can start planning, but ours turned out much differently. This is when we found out something was wrong with our little girl. When I heard those words, my heart sank and I instantly felt very ill and from that day forward our journey as parents changed forever. The early days were the hardest when we had no answers, something was wrong, but we didn’t know what. I felt numb through the weeks we waited for the tests to come back. The only thing I remember from that time was praying all day, crying all day, and being told by the MFM (Maternal Fetal Medicine) Specialist that I could abort my baby and try again if I wanted to. Words that cut so deeply, how could I ever even imagine doing such a thing to a child God had blessed us with? We were chosen to be this child's parents and that was exactly what we were going to be no matter what journey that took us on.

        Finally, the tests came in and we found out our daughter had Turner Syndrome. A chromosomal disorder that affects the sex chromosome, a non-affected female has two X chromosomes (XX) while a female with TS may have only one X chromosome or the first chromosome could be deleted in some capacity. There are many variants of Turner Syndrome which makes it unique in that most women with Turner Syndrome all have different symptoms caused by the missing or partially deleted X Chromosome. Although there are many symptoms, quite possibly the biggest hurdle for these girls to cross is birth. Turner Syndrome is one of the most common chromosomal disorders, however very few people are living with it because only 2% of babies with Turner Syndrome survive to birth. A reality that becomes more real to me the more I am in this Turner Syndrome community and I see mom after mom miscarry their TS babies. 

          In the months leading up to delivery we learned our daughter would most likely need heart surgery upon birth, we changed doctors and hospitals to accommodate for the pending surgery. We made it to delivery day, two weeks earlier than planned, but we made it. I was induced due to low amniotic fluid. After laboring for 6 hours our baby girl went into distress and we didn’t want to strain her heart any more so we were rushed to the operating room for an emergency C-section. Eila Jane was born at just 3 lb 15oz and 15 ¾ in long. They took her straight to the NICU so I sat in recovery alone with no baby. Definitely not the idea of delivery I had when we decided to have a baby, and an experience that I still am working to process. It was another day or so before we could hold her, but the amazing blessing in all of this was she never ended up needing the heart surgery and the lengthy NICU stay they prepared us for only ended up being 8 days. All the terrible things they told us prior to her birth ended up not being true, other than being tiny, none of her medical issues were life threatening and she was able to come home once we fattened her up a bit! All of this we thank God for daily as we know this is not always the outcome, and we never take a day with our girl for granted. 

          Since Eila has been born we have had our fair share of doctors and to be honest it’s exhausting. Mommas with special needs kids, I see you. You have mixed emotions, you're so thankful your child is alive but you’re also so tired of the appointments, therapies and surgeries. When your child hits a big developmental milestone long after they should have it is a mountain top moment and you're so thankful for it, but deep in your gut you wish they could be just like their peers. Between Cardiology, Urology, ENT, Audiology, Ophthalmology, Orthopedics, Endocrinology, 5 surgeries, Swim Therapy, Physical Therapy, Occupational Therapy, Vision Therapy, semi-annual blood draws, and countless evaluations sometimes it feels like too much. My greatest encouragement through all of it is knowing that out of all the people in the world we were chosen to be her parents. God chose us and equipped us to be her parents, and that is what gets me through it all. If you feel that heaviness, no matter what the reason, remember you were hand selected to be your child's parent. No matter what the special need is, whether it’s few or many, my greatest piece of advice is to find other parents in your shoes. It has been so healing and supportive to connect with other parents of TS girls who know exactly what we are going through; the therapies, surgeries, decisions. 

           And if you have a momma friend who has a special needs kid and you do not, please check in on them. We don’t look for sympathy, we’re not asking for you to feel bad for us, but sometimes we need to get the weight off our chests. Ask how therapies are going, offer to help with their other kids if they’ve got appointments to go to, let them just talk. I find myself bottling the weight of it all up inside, and when a friend checks-in I tend to word vomit all I'm feeling onto them. Not because I want them to feel bad for me or my daughter, but I just need to let it out. I am so thankful for my friends and how much they care for not only me but my daughter. They fight for her just like I do and I am so thankful!

             To conclude, if you're a special needs parent you’ve got this, you are specifically chosen to be your child’s parent and advocate. Find a community of parents that share your journey, it is so therapeutic to find people navigating the same challenges as you.