Six years ago today, at 9am I got a phone call that would forever change our lives. The lady on the other end was calling from Kaiser. She asked that Jon and I come in right away because they noticed that something wasn't right with our baby's heart. In that moment my heart broke. She said that it appeared as though part of his heart didn't fully form and they needed to confirm the diagnosis.
I called Jon in tears and told him we needed to go to Kaiser, I dropped the girls off to my mom & prayed the whole drive downtown that everything would be okay. I pulled myself together & we went in to see the doctor. After he took a closer look he confirmed Joshua's condition with us; Hypoplastic Left Heart Syndrome. Essentially, only the right side of Joshua's heart developed and his ascending aorta was also severely under developed. The first thing the doctor told us was that it wasn't too late to terminate this baby. It was awful. We told him that wasn't a consideration and we were going to keep our boy, who we were already in love with. We asked him what our options were and he told us briefly what could be done. He said that treatment would be done at UCSF. He told us, "As far as heart defects go, this is the one you find at the very back of the book, it's the one you don't want, the most severe of them all. " He then gave us a study we would later learn was outdated. It gave us no hope. We sat in the room by ourselves and just cried. It too was a day I will never forget.
All we wanted to do was go home and hold our little girls. In moments like these your priorities in life become so crystal clear. We didn't have a clue what the future would hold, but we knew we wanted to do everything in our power to buy time with our son. I remember praying and pleading with Heavenly Father to just give us time. I didn't care how hard the journey would be, I simply wanted time to meet him, to hold him, to love him.
We've been so blessed to have Josh in our lives for the past 5.5 years. It's been a very difficult journey, but we've grown and learned so much through these experiences. We've learned a lot about parenting and have a unique perspective thanks to Joshua. We've learned that there are some incredible people in this world, who are selfless and kind. We've build many friendships with families who've experienced similar circumstances. We had the pleasure of being treated by some of the brightest minds in the field at UCSF & view them as an extension of our family. While we don't understand why Josh was born with HLHS, we do understand that Heavenly Father loves us and one day Josh will be made whole. Finally, we've learned that we still have quite a bit of learning to do. When we were young we thought we knew everything, turns out, we were wrong. :)
Seems like there are so many anniversaries when you have a child with a heart defect; surgeries, big milestones, small milestones, etc. I guess it's all about celebrating how far you've come.
Six years ago today I had my heart broken, but today, life is quite good & I wouldn't change a thing.
To follow up on the plans we made for our baby boy - he does play baseball, football & soccer...he does everything, and he's darn good it too!!
2 comments:
In that photo Josh looks absolutly adorable with his Dad! I am happy that he is doing so well...enjoy each and every day!
:) So well written Ally! Thank you for sharing your beautiful perspective on being Josh's Mom. I think you are all just amazing. xo
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