Parenthood has been the most fulfilling venture of my entire life. Forget about educational degrees and climbing the corporate ladder—watching my children flourish gives me a daily dose of pride and accomplishment. I like to believe all parents feel this way.
When two people decide to have children, I think it’s fair to say they don’t prepare for the arrival of a child with special needs. (Unless there is family history or confirmed genetic testing, of course.) Most parents-to-be assume their baby will be perfect. This, in turn, makes it absolutely devastating when assumptions are dashed and “the perfect baby” isn’t so perfect after all.
I felt this way when Niki was diagnosed. Life, as I knew it, was over. My life was destroyed when Ethan passed away, but Niki’s diagnosis was the straw that broke the camel’s back. I just couldn’t believe I gave birth to another baby with severe factor VII deficiency. John and I knew there was a chance Niki would be born with it, but 25% seems like such a tiny number. We simply believed it wouldn’t happen again. After all, there was a 75% chance that she wouldn’t be deficient.
John and I had two hours of normalcy enjoying our long-coveted “perfect baby girl.” Two hours without the diagnosis that would alter our lives once more—severe factor VII deficiency. I felt my heart sink when the pediatrician came in to give us the news. My veteran parent status immediately went down the drain and I began crying. A huge wave of guilt swept over me as I stared at the sweet baby girl lying in my arms. I honestly believed I had failed Niki because I passed on a “bad gene.” How could I possibly be a suitable mother to this very rare little girl? I didn’t know what I was going to do.
Supporting Staff
Niki was quickly whisked away to the NICU so the doctors and nurses could evaluate her. Meanwhile, John and I mourned the loss of our perfect baby. We didn’t know if she would live or die. I delivered vaginally, so all we could think about was whether Niki had a head bleed. Thankfully, the neonatologist and nurses that day were the same people who took care of Ethan. They knew exactly what needed to be done for Niki—her ultrasound ruled out a head bleed.
John and I have a very strong emotional bond to that staff because of the time we spent together during Ethan’s final days. Once the initial commotion died down, the nurse that helped me bathe and dress Ethan after he was gone came to visit with Niki. As she looked down at Niki sleeping in her isolette, the nurse hugged me and marveled at how beautiful Niki was. She didn’t talk about Niki’s condition or express any pity for her. I felt like I was showing my perfect baby to an old friend. We received the same reaction from our social worker, too: no pity, just admiration. She was the same social worker who supported us as Ethan slowly slipped away.
Both women gave me my first sense of normalcy despite abnormal things going on around us. Sure, they knew things weren’t going to be easy for our family, but they didn’t feel sorry for us, either. It was the first time I felt like Niki’s diagnosis wasn’t such terrible news after all. Niki was perfect in her own way. Having a child with special needs isn’t the end of the world. Actually, it is a blessing.
Not too many parents get to embark on this journey. I’ve come to realize that parenting is even more rewarding when you don’t know what the rewards will be. Slowly but surely, John and I entered the world of the unknown with a little more confidence each passing day. This new world was filled with life in the NICU, surgeries, blood transfusions, infusions, education, prophylaxis and tons of unknowns. The month after Niki was born had its ups and downs. I don’t think we would have survived if it weren’t for each and every NICU nurse, neonatologist and resident rooting for us along the way.
I hadn’t planned on this type of parenting venture, but I feel honored to be here. Not only am I proud of my child with special needs, but I’m proud of what I can do for her, too. I am in constant awe of what my daughter teaches me about myself. It isn’t easy to do what we parents have to do on a daily basis, but this lifestyle is a social norm in the bleeding disorders community. And now, it is my family’s norm.
It takes a lot of blood, sweat and tears to learn how to be a caregiver-parent. But I say it’s totally worth it. Becoming a “HemoMom” has helped me earn the best credentials life has to offer.
Read more about Tiffany's life at The Art of Lion Taming.