Two Brave Little Souls...

As Ally’s Mama, I want to share a personal story of how God used two children- my own daughter, and another little friend - to change my life forever. I will never be the same because of them.

Ally lived in room 687 of the BMT unit of Children’s hospital of Michigan in Detroit from July 19, 2011 until her death on April 5, 2012. Her final day was spent in ICU room #450. It is really there, in that hospital and those hospital rooms that the vision for the Ally Jolie Foundation all started.

One night around 10pm, while Ally was in her room getting her TPN (a method of feeding that is given through the veins), I left her room to take a break. As I walked, I saw a child in his room- alone, crying in his crib. Stopping at the nursing station, I asked if there was anyone who could sit with him, just as a source of comfort. They explained that they were busy and would go in as soon as possible. I knew they would do the best they could, but also understood the numerous responsibilities they had to tend to as well. The image of this crying, lonely child stuck with me so dramatically. I had never before considered the fact that a child would have to endure being in the hospital alone without the support of their family. Of course, we certainly cannot stand in judgement. There are many reasons, albeit sad, why children may be alone for lengths of time during a hospital stay. Some parents have to work or would lose the much needed health insurance. Some children come from single parent homes and there are no other family members available to offer assistance. More often than not, there are other children in the family who also require time, care and attention. In any case, until that night, the very thought of that type of situation had never crossed my mind. And until that night, it had never touched my heart. Once it did, however, the realization of those situations caused my husband and I to become more and more aware of children who were in fact often alone during their difficult hospital stay, and from that realization, a desire grew to find a way to help those children.

Can you imagine how difficult it must be for a child to be alone in an unfamiliar, dark room at night, without the comfort of their parents- noise, lights and activity going on in the hallways, strangers coming in and out of the room, talking about you, but not necessarily to you? It must be beyond frightening. So many of them can’t speak for themselves, cant articulate the hundreds of questions that are raging in their minds, and certainly can’t understand what is being talked about in front of them. It must be so overwhelming. It must be unimaginable. And yet, this overwhelming, unimaginable thing is a reality for some children. And this is the issue that the Ally Jolie Baldwin wants to address. After the passing of our own daughter, we decided to honor her life by starting a Foundation in her name, with a goal of helping children who, for numerous reasons, do not have family readily available. The Ally Jolie Baldwin Foundation was developed from that desire, from the realization of those needs, and with the hopes that no child will have to face those difficult moments alone.

After our Ally’s death, I began to assist with the work of our foundation. Several months later, I also started working as a volunteer at Children’s Hospital. On my first day as a bedside volunteer, I entered a room and saw a little boy lying in his crib facing away from the door. He turned his head around to see who was coming in. Details of the day are still so clear. He was clothed in a little yellow gown, his blankets lying around him, and Minnie Mouse was playing in the background. The Child Life Specialist told me his name, as I gently picked him up to hold. He sat on my lap and repeatedly patted my hands! He didn’t talk at all, but it was very obvious that he enjoyed being held by me. I remember he was nervous when the PCA came in to take his vitals. His eyes were big and he watched her every move. I held him for quite a while that day. I didn’t want to leave him. I can’t explain to you why, but I just didn’t want to put him down.

The next five days were the same. Every time I went, I just held him. He began to trust me and let me be his friend. I called him “my friend.” I asked volunteer services if I could be there with him every day, but they could not allow it, explaining regulations they had about situations such as these and stating that I could make a commitment to volunteer twice a week, but nothing more involving him at that time. That was difficult for me, as I always missed my friend when I wasn’t there. He was unable to walk and was so sick that he was confined to his room, so being there with him, holding him and talking to him eased his pain and gave him comfort. I had learned from the staff that he didn’t have many visitors and his parents barely came by. He had never spoken yet but as he got to know me better I taught him to say “Night-night, Dada, and Abba.” I also made a few sounds that we would use back and forth with each other. I would make those sounds at the door of his room as I was putting on my gown, gloves and mask before entering. He would know it was me, and I could see him raising his body slightly up and down as I approached him! He knew he was about to be picked up, and responded with excitement! He couldn’t wait to be held, and I couldn’t wait to hold him. Our time together was very special! This little boy was one of the children who was alone almost all the time. Although the visits were seldom, when his dad did come, his eyes would light up! He had lived at the hospital his whole life. And yet, with all he had gone through, he was always willing to smile. He would smile at me as soon as soon as he saw me. While on life support and while intubated, he smiled at me. The only thing he desired was to be held. He rarely cried, unless he wanted to be held, and unfortunately at times he couldn’t be held because he was on life support and they didn’t want his endotracheal tube to fall out. He would cry when I had to put him back in his crib because it was time for me to leave. And the last time I saw him, he cried because he was trying to take my mask off and I wouldn’t let him.

This little boy was always happy- even without food and water. He coughed because his throat was dry, but never cried over it. His favorite show was “Minnie Mouse” (that was also my daughter’s favorite!), and he’d watch it over and over again! He would dance along with Minnie, using his arms. He was always so happy to see me and he smiled the whole time I was there. He’d give me five. He’d let me sing to him. He always liked to stick his fingers in my mouth but that wasn’t healthy for him so I’d have to tell him no.

Eventually, he even began to say the words that I had taught him.

One day when I arrived, his nurse told me that he wasn’t doing well. I still wanted to hold him and spend time with him and was truly excited that she allowed it. As the nurse was taking his blood pressure, he sat silently in his crib. When she told him to hold still, he smiled at her, then leaned forward toward me so that I could kiss his forehead. After having received his kiss, he looked back at the nurse and smiled again! He played this little game with her over and over again! To me, it became cuter each time! And I was learning something valuable in the midst of the cuteness.

She was caring for him as a patient, but he was loving us as friends. And I was being taught- a mighty lesson by this little guy!

I was learning to simply share my love rather than trying to fix people. Many times while caring for my daughter, I felt I was more of a nurse than her mama. I wanted to fix things, and fix the people who were trying to help my daughter. As I reflected back, I began to realize that no matter how much I love them, or how hard I try, I simply cannot save people from the trials and horrible situations that they are facing. Only God can do that. But I can love them through it. You may think that is a strange lesson to learn from my young daughter and my little friend. But strange as it may seem, it was vital, necessary and has had ongoing effects. And it hasn’t been easy.

Over those months of caring for Ally, as well as in the situation with my little friend, it wasn’t easy to realize that I had no control over a situation that looked so bad. Everything in me wanted to find a way to fix it. But, instead, God had to teach me to walk by faith and not by sight. He continually reminded me that He is in control not me. He reassured me that He is the very essence of love and there is a purpose for suffering, even when it involves my sweet Ally and my little friend. Through lifes most treacherous times, God isn’t doing something horrendous to us, but rather, he is walking us through it. And through the process, often painful and full of our own questions, He helps us takes our eyes off of this temporary world and put our eyes on Him and our eternal home.

My daughter and my friend are with Jesus now. I miss them both greatly, but I am at peace knowing they are at peace. God used the suffering of these precious children to speak to people who were caring for them, starting with myself. And because of that, I will continue to trust in him. Often I would feel sad when I would have to leave my little friend, thinking about how that he would be alone. But God was faithful in reminding me of two things. He had brought our lives together on that day in March for a reason. And His word promises, “For when my father and mother have forsaken me, the Lord will take me in.” (Psalm 27:10) In His faithfulness, God reassured me that He would care for my little friend, even when I wasn’t there.

I am so blessed that Jesus gave both Ally and my little friend to me to love for even a short amount of time. The best moments of my life were in those hospital rooms. I know some may consider that to sound sullen or strange, but I would do it all over again. The privilege of being able to share my love with them was only overshadowed by being loved by them. Everything changes in this world, nothing is guaranteed and we will all face suffering of some sorts, but it is love that carries us through- God’s faithful love, and the love of others who are reflecting God’s love. My daughter and my friend were gifts that were “loaned” to me. I am not the same person after caring for them. They made me a better person. I am now more determined to be a person with sincere compassion, deeper understanding, and a more profound desire to love others. What is love? It is not a feeling or an emotion; it is one of God’s greatest commandments! It’s the only thing we can take from this world. It is the one thing my daughter and my friend gave me and that I could give to them. God used the lives and the actual suffering of my daughter and my friend to show me that this life is temporary. But thankfully, there is more than just this life.

I don’t have the same desires for this world anymore. Material things and social status no longer hold the value they once did. I have a deeper appreciation of my own health and am grateful for the simple ability to have a sip of water, eat substantial food, have a warm bed to sleep in and a husband to love and support me. I now think of what I do have rather than what I don’t have. When I was younger, I always wondered if this life was all there is? And then God showed me truths – truths that encouraged me even in my hardest times. There is life after this! There is eternal life with the Lord! And because of that, I will see my sweet daughter and my little friend again! This life is temporary and the suffering is temporary. The good in this world- my Ally and my friend- is just a glimpse of heaven!

I miss them and I can’t wait to see them again. I know they will be waiting for me, ready to take my hand in the same way as I so often took theirs. I experience such joy as I replay the memories of them in my heart! And even though I miss them, I rejoice knowing that these two brave little souls are more alive today in heaven than they ever were here on earth- with bodies that are fully healed and whole. I am so thankful for the love we shared and for all I have learned through them. – Ally’s mama (Written in August of 2014)

We as adults, take for granted our good health, water, food, love, comfort, quiet time, affection, warm beds and blankets, our family members and our friends…these children live without it all and they are content. All these children want is for someone to love them, hold them, comfort them and be with them.