What a privilege it is to live in this incredible world. Sure there is a lot of crap that goes on but if you open your eyes to the world around us and the life we’ve been given. You might walk a little differently. A little perspective goes along way.
When our daughter was diagnosed with PKU we were terrified. No one understood what it felt like. We were walking this unknown path with a four day old baby. Everyone we reached out to had never heard of PKU. We were lost in a great big world.
We listened to our doctors, followed referrals and found ourselves at Children’s Hospital LA. I am not going to speak for that hospital in terms of other departments. I know they save families lives and do extraordinary things. But the Metabolic Department is practically nonexistent. I won’t go into the gritty details but we quickly transferred to UCLA and our quality of life was dramatically changed.
In the beginning all of our doctors were pushing us to join parent groups on places like Facebook, or meet up with other parents who have children with PKU. We simply weren’t ready. We felt pressured to open our house to strangers when all we wanted was to be able to find our own rhythm, and surround ourselves with family and friends.
Well here we are almost eleven months later. PKU is an extremely rare metabolic disease. I lean on God. I pray every day. Lately my prayer has been to bring a friend into my life that understands. I don’t know if you believe in God or not, but I will tell you this, if you do start believing, you won’t be so scared, and you won’t be lonely.
Well, I joined a couple groups on Facebook. Amazing communities of people. The world became a bit smaller for me. I could sympathize so much with those families. But here we are in Malibu and most of the families are spread out across the world.
Two months ago I was at my chiropractor and the front desk girl says to me, you won’t believe this, but another Mom who comes to see us has a daughter with PKU. My jaw dropped. I said, well maybe someday we will meet!
I left with this optimism thinking, there is another Mom like me that lives in my area who has a daughter with PKU?! And nerves crept in thinking. Oh no, I can’t force this to happen. She will think I’m weird for it. So I just put it in my prayers and said, I would really like to meet her if you can make that happen.
Well, two weeks ago I’m rushing out of my chiropractors office to get my doctor to her pediatrician. I’m checking out, and the receptionist says to me, “Kacie, this is _____, this is the Mom I was telling you about.
I introduced myself right away. Frankie was in my arms, and pretty fussy because she wasn’t feeling well. We hit it off right away. I had an invitation to my daughters birthday with me that I handed to her and told her I would love to get coffee. Turns out her daughter is less than a month younger than Frankie. What are the chances?!!!!! Two girls day’s apart diagnosed with the same life long journey, and we live incredibly close to each other. Believe what you want to believe but PRAYERS WORK.
Tears built in her eyes as we spoke about our journey and I thought, wow, this woman knows. She knows this feeling of loneliness wondering our way through this crazy journey. Well, we’ve been texting and talking ever since. We are getting together today, and I just wanted to write this for anyone reading to let you know, you are NEVER ALONE.
I don’t know if you believe in God, but PRAYERS WORK. I mean it. If you struggle with loneliness, get out, meet people, explore. When you put what you want into the universe, it will happen for you. But you can’t sit at home and twiddle your thumbs and wait for the phone to ring. You have to get out and live. Put that stamp on the envelope and mail that letter! Apply to life. Buy that plane ticket. Ask that girl you always think about out to coffee. It’s just a coffee!!!!!! But maybe that coffee could change your quality of life forever.
You are stronger than you know! And I will say this one more time, YOU ARE NEVER ALONE.
Much love, and off I go to meet another Mother and her daughter that could possibly be a wonderful, life long, friendship.