Thankful
We’ve been home just over a week and we are so glad to be home! Both Maliyah and I have been catching up on our sleep and eating better. We’ve had fewer bloating episodes and Maliyah’s appetite is so much better at this point. Best of all we are together as a family.
We had a follow up ultrasound on Friday to see if the Lovenox shots were making any progress on the 5 blood clots in her upper chest and arms. I wasn’t expecting much, but thank God that the one in her right subclavian vein was gone, and the one in her left subclavian vein didn’t extend all the way up to her internal jugular vein, and the one hanging out in her SVC was smaller! This has the been the first good news that we have had in a long time. This means that hopefully we’ll be able to put in a more permanent line in her chest, instead of the PICC line in her right lower leg. The Broviac central line is still hits me as a little bitter sweet. We were hoping that Maliyah would’ve been able to wean off of TPN by this time but alas that has not been the case. In the mean time hopefully it will present with fewer line infections and blood clots.
This journey has really shown us how incredibly generous and loving people are. I want to take the time to count our many blessings. It’s easy in our situation to focus on the unfairness of the situation and the hardships that have come our way, but if we keep focused on these things we will over look the incredible blessings God has given us.
First of all, Adam and I have been incredibly blessed with the most generous, loving, godly and supportive parents. They’ve rejoiced with us when Maliyah was finally born. They cried with us when we learned of her diagnosis and her prognosis. They’ve been through a lot of the ups and downs of this journey - from bringing Maliyah home from the NICU, 1st birthdays, 1st words, to the many hospitalizations we’ve experienced. I know that they have also cried many tears and prayed many prayers on our behalf. They shower Maliyah with an incredible amount of love and care. In fact, both grandmas just told me that they had a package in the mail for her! This journey would’ve been that much harder if we didn’t have them in our lives.
Our siblings and their spouses have been an incredible support. My brother will often just lend an listening ear so that that I can just vent and cry. Tennille has sent some very thoughtful care packages and also connected me with the MMIHS support group. April and Joshua have also been so supportive through all of this. Our extended family, friends and coworkers have all showed unbelievable support through this challenging time. A dear friend and coworker orchestrated a meal delivery schedule for the time Maliyah was in the NICU. So many coworkers sent meals and goodies during this time. Someone donated a chunk of her PTO and convinced others to donate some as well so that I could spend more time with Maliyah. Friends all took turns visiting Maliyah in the NICU so that she wouldn’t be alone when I needed a break. So many people formed prayer chains, sent monetary support, and have been an unending source of strength and love. I’m afraid of saying any names for fear of forgetting any. Please just know that we are unbelievably grateful for all the love that has been poured out to us.
Most of all I am thankful to God. I know that it was not in His original plan for us to experience pain and suffering, and that He is hurting right there beside us. He has carried us through some dark moments and provided for us. We don’t know what the future holds but I know that He has our best interests in mind.
Watching Maliyah live each day to the fullest, has helped me to celebrate the things that may be simple and ordinary in most peoples lives. The fact that she is able to eat some foods, and has the ability to have bowel movements and that her bladder functions fairly normally is something to be thankful for. I’m thankful that all her mental faculties are intact and is rather precocious when she talks. She surprises me with her maturity to understand a lot of what is going on around her. Her tender heart is often concerned if someone is hungry, hurting, or tired. The many hospitalizations makes me thankful for the time we do have at home. Thankful that we have our own beds to sleep in, a roof over our heads, and a loving family to spend time with. I’m trying to say “I love you” more, to hug her close, and to slow down to cherish each moment.
