Being Strong

The day that someone discovered Chase's Spina Bifida was not the day we discovered that our very first baby boy whom we had become so attached to sitting in my belly would be affected by something that we had no control to change or fix for him. It does not take long to know as a parent you would do anything for your child even our unborn one to take away any hurt or pain they may ever feel. It was the ultrasound to verify our little bundle was indeed a boy just like his daddy wanted we had almost missed the ultrasound appointment by a time mix up but thankfully we had two appointments that day so they made room for us to go down to the lab. I remember Bryan couldn't come in for a long time while she was taking measurements and it never struck me as odd or weird I just waited peeking up at my little boy on the screen completely happy. We were also scheduled to have blood drawn afterwards as a followup to the state screening test we had signed up for. I can distinctly remember after being at the doctors for hours Bryan and I joking how if they didn't find anything at the first one, they weren't going to find anything now in our healthy boy and that we should leave (I hate needles and would make tons of excuse jokes to get out of them.) Boy was I wrong, I will never forget that joke. We left after the blood draw perfectly happy.

I missed the call by five minutes and they were already gone for the day. I truly knew something was not right maybe it was that my doctors office never called me personally. Bryan said maybe it was an appointment change, I was not convinced and hardly slept. I waited in bed aimlessly til 9AM when I could call back, however when I went to my phone I had 5 missed calls and 3 voice mails already from them. I immediately went into a sweat they don't call that many times for an appointment change before they're open. The first messages were all bland but then there it was a different person then the first messages telling me our baby may have a "neural tube defect" and they needed to see us right away. What in the hell was that I thought! Bryan was googling already while I was calling the office back. He told me spina bifida? I said no no they said neural like brain? (what did I know) The woman told us we had two appointments to confirm lined up already at two different hospitals, not to come alone so someone could drive if we became too emotional I couldn't hear what she was saying after that this was serious. We were both crying by then and we didn't even know what was wrong.

Because of the surprise of the situation even for them they didn't really have room to see us and fit us in where they could and I think I will always be angry at them for it but they sent us to a genetic counselor first who expected us to grieve and cry and ask him questions when we didn't even know what was wrong and technically, neither did they! They kept saying the needed to confirm on another ultrasound to be sure. Yet here we were in a counselling office being told our options for our baby when we couldn't fully grasp if they were even right. Bryan, my mom and I were all pretty calm at this point as were all very logical people. We knew he expected us to break down, instead we studied for an hr before the ultrasound we googled everything we could about spina bifida and the new surgery option the counselor mentioned. Ill never know why but I felt this fetal surgery was my option from the get-go.

Chase has Spina Bifida and the pain Bryan and I felt that night and the next is indescribable. I doubt either of us has ever been so vulnerable to another person with open emotion. We have both seen the others eyes in the worst moment of their life to date. I couldn't look at Chases room, I think we were both terrified to be happy like before but we were wrong, we were very wrong to be unhappy for a second and we know now that this changes nothing, that Chase is still going to be the best thing that ever happened to us. It was Bryan who was strong first. It was him who first said he loves him anyways and hes still excited to meet his son. He regained composure held me when I needed it, let me cry if I needed but Bryan did not cry with me anymore. Im sure he was still sad and maybe still is to some degree but he is completely amazingly inspiring to me to be so strong, I couldn't do it the day after but I had a dream the second night that my passed grandmother was watching over Chase and us. I woke up strong through her and Bryan and now my life is different. Now my life revolves around our baby in a new way. After hours of research we realized we are actually very fortunate, we found out very early, Chases lesion is very low(L5,S1...L4,L5 at worst) and not very big from what can be seen right now, he has minimal fluid in his brain very close to the normal range and the chiari through ultrasound is at a very early stage and doesn't look too bad. All the minimums to qualify us for fetal surgery. The specialist we see says Chase is one of the best cases he's seen and thinks the surgery is going to be amazing for him but we wont really know until he's born. We are going through with the option to do fetal Surgery in May at UCSF. People ask me if I'm scared but I'm not. I'm not scared to give Chase any opportunity I can and while I cant cure this for him, I can be strong for him.

& so Chase's journey begins....