!!!HAPPY BIRTHDAY BREWER!!!!

HAPPY BIRTHDAY BREWER!!  

He did it! We did it!! One year, 12 months, 365 days. It's a big deal and we are so proud of Brewer and so grateful for him. He has taught us profound lessons and showed us how to love more deeply. HAPPY BIRTHDAY LIONHEART! 

       February 1st was when it really started sinking in that Brewer was almost one. I knew I wanted to write something down, my feelings or thoughts about the last year, but I kept putting it off. The main reason I kept delaying was because my emotions were all over the place and I really didn't feel like searching them--good, sad, or ugly, they would only bring tears. And now as it seems like I can't put it off any longer, the feelings that I am having are of the highest sense of accomplishment and pride for my family, each one: Phil, Boyd and Brewer.

       This last year is one that I could have never imagined experiencing. One that seemed to drag on during the excruciating and heart-wreching moments and rush by simultaneously. In the beginning looking toward the future was, at times, discouraging, but only because we were not sure how on earth we would be able to manage what was required of us. We were pushed physically, emotionally, and spiritually. We were shaken from highs to lows. There we many moments when we showed each other our best and our worst. Through all of the demands that Brewer required of us, we too struggled with our own personal trials and challenges. Lack of sleep seemed to be an ever present struggle, one that affected each person in our family one way or another. The same can be said for being quarantined to our own home for months, with no outlet or time alone. Staying home from church took away that weekly spiritual rejuvenation that we longed for each Sunday, the uplift that gives you the strength to push forward through another week.

      I don't know if it's strange, but I like to look back to the pictures from the day he was born, from the first few hours, when we thought everything was perfect.  Labor was amazing and I still wish I could do it again. When I look at his picture with his chest scarless, I imagine him being whole again one day, with a new perfect heart, and a smooth chest. I am grateful for the knowledge that I have.

      I don't like to look at his hospital pictures, but I do occasionally. It breaks me all over again to see Brewer hooked up, medicated, in pain, and helpless. But it reminds me of a few things. It reminds me that Brewer is stronger than even we know, he's a fighter, a lion-heart. And it reminds me of all the miracles that we have seen over the past year. The miracles have been so great, in number and magnitude. It also reminds me of the amazing medical team that is behind Brewer. We couldn't be in a better place than at PCMC, from his Cardiologist, Surgeon, NP's, nurses, and so so so many more! It's an incredible place and I have complete trust and confidence in his medical treatments.

     At the beginning of this experience, we promised ourselves, our family, and Brewer that we would do whatever it took to give him the best chance for the best quality of life that we could. To this day I am so happy to be able to say that over this past year, we have done everything that we knew how and we have done our best. That doesn't mean that things were always pretty at our house, but even in the ugly moments we were trying. In return we have seen Brewer grow and develop! Even today, as Phil was leaving for work, Brewer waved to him!! That was something we've been trying to teach him for several weeks now! It was a great birthday gift that brought so much joy! We have also made life long friends and developed relationships with those who have Brewer's best interest at heart. Brewer and the experiences that we have had this year have been a blessing to our family in every way.

     As difficult as it was, it all worth it, 1000 times over. We can now look back and understand what Dr. Grey said to us one of the first days at PCMC, "Parents of these kids look back and say it was so much harder than they imagined, but that it was worth it." Yes. It has been so much harder than we thought. I have never had an experience push me so far past my limits or what I thought I was capable of.  But it has all been for Brewer and for our family. Brewer is doing so well, better than most kids with HLHS and we HAVE him. He is part of our family on this earth. He giggles and makes us giggle. He's learning and progressing. There have been many (many many many) times over this past year that Phil has carried us and has been my strength. But the real rock of our family has been Brewer. He has been the one that has carried us and given us the strength to do what was required. He is such a strong little boy with a light that shines out to each person. Everyone can see it and touches so many. He has changed us individually and as a family. We are stronger and more united than before and Brewer will keep us that way.

    Looking to the future has always been scary. Everything is pretty uncertain and there are more surgeries and a mix of emotions that go with a looming heart transplant. There will be important decisions to make and the way in which the medical world will develop is unpredictable. The only comfort comes with the knowledge of having an all-knowing Heavenly Father who loves us all unconditionally. He has a plan for each one of us that exceeds that of our own. He will lift us when we can't go on. He will never leave us in times of need. After this year, I KNOW that truth more than I have ever before. I don't know where the our path will lead and what the future holds for Brewer or for any of us, but we can go forward with confidence in our God and with the hope of a bright, beautiful and joyous future.