I have thought about you, Josh, Jake, and Jaxton so much over the past two weeks, and continue to wonder how I was so blessed to be able to be there with you all when Jaxton was born, get to know you all and spend time with you while caring for Jaxton and be present with you and your family when sweet Jaxton took his last breath. I have spent a great deal of time grieving your loss over the past few weeks, and wishing, I too, could make sense of why all of this happened. I still really don’t have an answer, as I know, neither do you. God has a plan, and it is not our job to understand “why”, but to trust in him that he knows exactly what he is doing.
There are so many moments I will always remember about the 2 week journey I was blessed to take with you and your family. If you do not mind, I would like to tell you about a few of those moments. I was going to post this in response to your latest blog post, but thought I would send it to you privately, and if you wanted to share it with others, you could.
Meeting Jaxton, you, Josh, and sleepy little Jake on that first long and very scary night. I realized from the first moments I met you, that there was something very special about your family, and the entire situation that was transpiring in front of me over the first 12 hours I was there that night. I didn’t know how or why it was special at the time, but just had a feeling that something I had never experienced before was about to take place. I told you that normally admission’s were not always on my list of “favorite things” for my job, but I was asked when I walked thru the door that night if I would take an admission, and I immediately said “yes”… not just “yes”, but ”yes” with no hesitation at all. I found that unusual at the time, but don’t now, in retrospect. I learned later from you that your c-section was scheduled for 4 that afternoon, but you had eaten a piece of toast, which delayed your C-section until 7. I came on shift at 7, and Jaxton was born at 7:35pm. Because you ate that toast, I was able to celebrate Jaxton’s birth”days” with him and your family every night I worked, at exactly 7:35 pm. Something I would have missed, had you had your c-section at 4 as originally planned.
I remember talking to you that first night about how perfect Jaxton was, and talking to Josh about how beautiful his hands were. I always loved his little, wrinkly hands. He needed to grow into his skin a bit
I remember giving him his first binky, and being there when you, Josh, and your family saw him suck on it for the first time. Him opening his eyes, and looking around. I know he was saying, “Why have you been holding out on me for so long?” LOL. He definitely loved getting your milk on his binky and then sucking on it.
I remember sitting with you and Grandma watching a sweet video about another family who had lost a baby to Trisomy 13, and praying that the same fate would not fall on you and your family. I remember reading your entire blog at four in the morning during my shift three days after I had been blessed to meet you all, and remembering how my heart shifted from a “medical” way of looking at things, to a nurse who while trying to keep my heart from breaking, also found meaning behind my faith and my own life, and wanting nothing more then to make every moment for you and your family the most meaningful memorable moments you could have.
I remember you asking me, “What would you do, if this was your baby lying in this bed?” as we stood around Jaxton’s bed one night at midnight looking at him. To this day, (the tears well up in my eyes the same as they did at that moment). I remember that I couldn’t answer you, because in my heart of hearts, I knew that I didn’t have an answer for you. I remember that question changed me and my view point completely as a nurse not just for Jaxton, but for every family I will ever take care of from that moment forward. I cannot begin to judge or criticize, or think I know what the right answer should be, when I have never walked the road that a mother walks with their sick baby. I believe that I have always been empathizing with my families, but always preferred to look at things from an entirely medical perspective, and you and Jaxton changed me. You showed me how important it was to remember the medical of course, since I am a nurse, but to hold onto the “True Heart” of each patient, family, and the moments that I have with them. I cared for Jaxton, and you all differently from that moment forward. I wanted nothing more for Jaxton to be completely healed as all of you did, but wanted to also make sure that every moment you had with him when I was watching over your family was as special and memorable as it could be, allowing you to get to know Jaxton in every way possible; memorizing his face, and his sweet smell, learning what he liked and didn’t like, and how he looked around when his eyes were open as if he was taking it all in, (even at his newborn age, he was so curious). I hoped that you would feel as though you got to know Jaxton so well, despite the short time he was with you here on earth.
I remember Gracie and I buying Jaxton his cookie monster cupcake for his one week birthday, and then learning you had bought Jake a Cookie Monster doll downstairs in the gift shop that same day and wondering what was the probability that that was a coincidence.
I remember crying as I sat in my car after coming to see you one morning with my own baby, and hearing that Jaxton’s second breathing test had not gone well. I remember my baby seeing the tears in your eyes and then repeatedly asking to hug you as if she knew why you were crying.
I remember being with you at some very scary moments, and also being present at some very fun times as well. I remember watching you, Grandma, Josh, and Josh’s sister as well as Jake and your brother-in-law through the room window laughing and enjoying each other’s company, and feeling my heart swell because I was so happy that you were able to make Jaxton’s room home for you all while you were here with Jaxton and how wonderfully supportive your family and friends were.
I will always remember our talks, our late night laughs about Jaxton’s “nose bugers”, and how proud his big brother would be at his poops.
I will always remember Jaxton being YOUR “Best Boy”. You called him that so tenderly from the very first moment I saw you with him. I always thought that was the perfect name for him, and every time you called him that, I felt my heart swell up a little bit more, and I could feel the tears start flooding my eyes. He was your “Best Boy”. He knew it, and I know he always felt that too. I think if he could have spoke to you, he would have called you and Josh “Best mommy” and “Best daddy” too.
I will always remember the last 24 hours and 30 minutes I had with you all and Jaxton. As I said, I feel so blessed to have been the nurse there for you in the beginning, the last moments in which we said goodbye to him, and so many of theprecious moments in between. I remember Josh reading his passage to him as you were holding his sweet body so closelyskin to skin, kissing his lips (something you were unable to do because of the ventilator tube since he was born), Psalm 139:13. I will always remember as I sat next to you and Josh, crying with you, how incredibly perfect that scripture was. As if it had been written specifically and lovingly for Jaxton (as well as all that knew him). I remember my own faith being renewed as Josh read those words, and feeling so incredibly grateful for being able to share those all too short weeks with you and your entire family, and especially with Jaxton.
I will always remember Room 1, as “Jaxton’s Room”. I still walk past that room and think his name banner should be hanging there, and find myself sad that it isn’t.
More then anything else, I will remember Jaxton and your family as being the baby and family, after so many years of nursing, that truly changed my viewpoint and the way in which I was a nurse for other families going thru similar situations as yours. He showed me how truly important nursing with my “Heart First” could be to not just my patient and their family, but to me as well. Jaxton, you and your family touched my life in such a profound way; I do not know how to adequately express it in words. I do hope that this letter will at least give a glimpse to your mommy and daddy, as well as anyone else who reads it, just how amazing you and your entire family are to me. I will never forget any of you, and your message will always remain in my heart; for you changed the way in which I view life, my faith, nursing, and the way in which I am a mommy to my own baby. No moment will be too busy, too hectic, or too rushed to not take time to truly “be” in the moment with Grace. To take in every breath, laugh, tear, hug, kiss, and sigh as if it was the most important, and to love those moments, and never take one of them for granted. You and your family have changed me for the better, and for that I feel so blessed.
“You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous–and how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me,* O God! They are innumerable! I can’t even count them; they outnumber the grains of sand! And when I wake up in the morning, you are still with me.” Psalm 139:13
Lisa, sending much love to you all. Know that I am thinking of you so often during this difficult time.
~ Rest in Peace sweet Jaxton ~
My friend Wendy,
We prayed for YOU and all of Jaxton’s nurses and doctors since we knew he would one day meet you all. What an answer to prayer you have been to Jaxton and our whole entire family. You have been there for the most special and most difficult times in our whole entire life. It was not a mistake that I ate that 1/2 piece of toast and that you said “Yes!” to admitting Jaxton! You were the answer to the prayers we were specifically praying. Although we did not get the MAJOR miracle we had been so hoping for, God certainly provided for us. Not only did he add Jaxton to our family, but YOU, Gracie and Shari have been added as well. For as much as you LOVED our son we love you for loving him! You have said so many times that Jaxton & our family had affected your life, but for some reason I didn’t really believe you until now. You have equally affected our life. The nurture and care you provided for us was unconditional. Even when we asked the same question 100 times you still had patience with us. You cared about what our concerns were. You checked in on us and visited us on your days off. Although you didn’t know exactly what to say when I asked you what you would do, you knew how to talk from a mothers heart. You tenderly helped us come to decisions about Jaxton’s last moments. You lovingly anticipated my needs and held my son as I walked away for the last time and that is a memory I will never forget and I’m so thankful. Thank you for letting me know he was in good hands or else I never would have been able to leave.
We love you so much!
Lisa, Josh, Jake, Jaxton & our whole family!