All week long Jake has been asking me what I would like to do for Mother’s Day. Each time I diverted the question away, but couldn’t quite figure out why. Yes, I am a mother to a beautiful and precious gift. But as odd as it may seem, I have such a hard time relating to mothers!

Just last week I was sitting at a church function listening to a cute speech about mothers from the Bible. The first character that the speaker mentioned was Eve who was the “reason we have epidurals” and when this was stated everyone in the room laughed and casually exchanged glances. I felt my face turn red and I looked down to my lap. I had no idea why that emotion came over me, but as the speech continued and talked about childbirth and raising children I found myself getting more and more emotional. With each funny line came exchanged glances of acknowledgement as this room full of mothers united joyfully in all of the mommy moments.

It isn’t so much that I don’t feel deserving of the title “mother”. But when I look at my role in Malachi’s life, I find so many others that seem to overshadow that one…nurse, caregiver, therapist, advocate…I am his arms when he wants to play with a toy…his head when he can’t figure out how to turn his own to see something new…I am his legs, trying desperately to allow him to do the things that other kids his age do.

Jake is always respectful of my weird moods and quirkiness so he allowed my constant diversions away from planning the day’s events. Tonight I was able to bring up the topic as I confided in him that I have a hard time relating to others as a mother. We talked about the last several years and it felt good to find comradery in my feelings. We reminisced about my first Mother’s Day when Malachi was still in the NICU. I remember the feeling of resentment each time I had to call into the front desk and identify myself and ask permission to enter the room that he was in. It is hard to feel like a mother when you have to ask for permission to see, touch, or even hold your child.

That year, Jake wanted to honor me for Mother’s Day and took me out to lunch. As he and I sat in a restaurant I was surrounded by families, most with children, and I ended up crying through most of the meal. I just wanted to bring my boy home!

Then the day came when Malachi was discharged. We were thrilled and terrified at the same time. We had to be so vigilant with medication schedules, feedings, seizure watch. We never got the chance to relax and enjoy our son. Malachi is now three years old, and Jake and I discussed tonight how it has been in the last three months that we have started to officially feel like parents! We have found our routine with his medical needs and appointments and finally have the strength to simply enjoy our son.

If you spend any time with Malachi you will see that there is a spunky, silly boy in that body! He is so eager to play with others and with toys, and he tries to make everything a game. When I grocery shop, he swings his little hand out, trying to knock things off the shelves. Lately he has been showing that he wants independence and pushes my hands off of his body. This is hard for me, because he cannot sit independently and needs my support, but I also want to respect his desire for independence. I have figured out that if I put his arm around my shoulder that he is able to sit somewhat unassisted, and he LOVES it!

We are also spending some time trying to teach Malachi how to independently play with toys. I have to admit though, that sometimes watching him hurts my heart deeply. He has so much desire to play…his eyes focus, his tongue sticks out in concentration, and it takes all his thoughts and might to get his arm to swing wildly at his toy. To see him work so hard gives me mixed feelings of pride and such a sadness. I wish I could take his pain and difficulties away.

But to see him simply play is something that Jake and I both have been soaking in. It is in these moments that we start to feel like parents. It is in the walks I can now take with Malachi, and the music classes that I can take him to, that I start to realize that this “mom” thing can be pretty fun! Yes, we still have days full of appointments and medical issues but there are now moments of simple childhood joy in the mix. It is so refreshing.

Tonight I had planned on talking about the Providence of God. This term has been on my mind for weeks as I have processed and dealt with the concept in my life. Then this morning during service, the Pastor started talking about that very thing and I smiled, feeling affirmed by God.

So what exactly is God’s Providence? It is the truth that God interacts with His creation, guiding the visible and invisible, the seen and unseen, the good and evil, and directs them all to align with His perfect will. This concept gives me so much hope and peace in my life.

I think about the many ways in which God’s Providence has already manifested in our family- I have always referred to them as my “God moments”. Those moments in which you grow silent in awe, for you know that you have just witnessed the intervention of God. I remember many of these moments happening early in our marriage. Needs were met within the hour of them being spoken, and Jake and I would simply look at each other in silence, knowing that God was blessing us.

My most influential reminder of God’s Providence came hours after Malachi’s birth. A nurse came in to take my vitals and I asked her about Malachi, desperate for news that he was doing better. A nurse just hours before had told me very coldly that it didn’t look like he was going to make it. I remember this second nurse looking at me and saying “I hope you know that it is a miracle that he is here.” I remember nodding, knowing that the odds were not in our favor. She said “I don’t think you understand. He had a knot that was already pulled tight in his umbilical cord. If he hadn’t been born early, he would have died in your womb.” Later I verified with the doctors that Malachi did, in fact, have a true tight knot in his cord. The doctor told me that there was a 100% chance that Malachi would have died around the 33 week mark and that his premature birth is the only thing that could have saved him as knots are not visible on scans.

THAT is the providence of God. 

Because of God’s Providence, I can be certain that God has a plan for Malachi’s life. He has a purpose for Malachi’s struggles, my sleepless nights…I can trust that God is continuing to “work all things together for His good”.

While we often look at difficult situations as negative things, I am able to see that sometimes God is using those tragedies in our lives to bring about an even greater blessing. It may be hours, weeks, months, years, or even a lifetime before we fully grasp the magnitude of His perfect plan, but we can find peace in knowing that our lives are being directed into His good and perfect will.

Malachi has a big appointment this week at Vanderbilt where we will be discussing his spine, hips, knees, and feet. We already know that Malachi’s hips are severely out of socket and have some big decisions to make regarding surgeries. My heart hurts as we prepare for these big conversations and we could really use prayers for wisdom and strength to make the best decisions for our little warrior.

Please also remember to pray for  Malachi’s brain, that it will continue to make new connections. Pray for physical strength for his body, particularly his core muscles so that he will be able to sit independently, as he so desperately desires to do. Pray this his brain allows him to rest and recharge at night, as it has been struggling lately with sleep. Pray for a whole body healing from the Lord and that we will continue to witness more miracles for our Malachi.

Sincerely,

Jake, Leah, and Malachi