Elizabeth was sitting in the green rocking chair and was just finishing working on Makinley's feet for the day. I put on my gown and she handed Makinley to me. We chatted for a little bit and then the doctors showed up for rounds. Jenn was Makinley's nurse for the day and she started going through the regular statistic reports and was communicating with our Nurse Practitioner Jean and Doctor Michelle Baack. Then they paused and reminded me they conducted a routine head ultrasound on Makinley the night before. (They do a head scan to check for brain bleeding and any abnormalities within a few days of a baby's birth and then a follow up scan at one month of age.) They told me it did not come back normal. Makinley had a serious brain injury called PVL - Pariventricular Leuko-Malacia.
My world stopped. I was uncomfortable being in the room with everyone now and they all seemed just as uncomfortable as I was feeling. Dr. Baack went on to explain that Makinley had many "gaps" in her brain and it was quite significant. This disease could affect her mobility and her mental learning capabilites. She stated that all of the Neo doctors were shocked with the results. Makinley was doing so well with her health that they almost didn't conduct the routine scan because no one anticipated anything. She was very sincere and offered to answer any questions that I wanted to ask now or later. I put on a brave face - more than what seemed possible - and just said that we would continue moving forward with Makinley's care just as we have in the past. She has already beaten the odds so who says that has to stop now. I knew in my heart this was true but it did not make my mind feel any better about what they were telling me. NO parent wants THEIR kid to have disabilities. I did manage to ask how this was missed on her initial brain scan one month earlier. They assume it was present but not recognized on the scan because she was so tiny and her brain was much smaller too. They also said this disease will not get better but it will not get worse.
They did not hover around for long which I appreciated. For some reason - I felt like I could not cry in the room in front of them or in front of Makinley. After they moved to the next room, I excused myself to grab a bite to eat since I skipped breakfast. Elizabeth said she would stop back this afternoon to see if I had any questions. I grabbed my keys, a kleenex pouch, and headed directly outside to the gardens in front of the Castle. Andrew and I sat here a lot before Makinley was born. During those summer months I wondered if our baby girl would survive. I prayed that God would allow me to raise her and teach her how to love Him. Now I was sitting there crying my eyes out asking why He would give me a child with a disability. Why did He make us go through such a difficult pregnancy and then add this on top of it.
I called Andrew as soon as I was outside. I told him that he needed to come and spend the day at the hospital with me. Makinley's brain scan was not normal and they are saying it is quite severe. I don't remember why his plans changed for the day but he was already on his way up to Sanford and was driving through Canton when I called him. This is yet another puzzle piece God already had in place so that he would arrive way quicker to be with his family during this time. As I waited for Andrew to meet me - I sat on that bench and cried. I cried selfishly for myself. I didn't know if I had the patience to deal with a disabled child. How was I going to lift a child who may never walk? Why was God asking me to overcome yet again? We already had her club feet to address - now this. I felt like he kept throwing me a baseball and I was supposed to catch it. I was sick of playing catch and I wanted to throw this back at Him. Then I cried for Makinley. Will her fellow classmates make fun of her? Will someone love her with disabilities? Will she be able to run and play? Will she understand us when we talk to her? Then I cried because I was having such negative thoughts. I didn't love her any less than I did the day before but yet she seemed so distant to me. Why was I questioning God's plan for my daughter....I should be more thankful that He spared her life and He is letting me raise her. So many things flooded my mind and all I could do about it was cry. I couldn't change her diagnosis. I couldn't change the outcome. Once again - I had no control in a situation with no end.
Andrew arrived and was much stronger than me. He wanted to go see Makinley and although I was reluctant I went along. At that moment, when the diagnosis was still setting in, it hurt me to see her just knowing the challenges she was going to face as well as our family. Thankfully, after my meltdown, God picked me up and reminded me of the precious blessing of our child. I was willing to face the challenges ahead and be the mommy that Makinley needed.
Elizabeth came back in our room that afternoon. She was so kind to Andrew and I. She drew pictures on the white board and fully explained this disease to both of us. She told us what she saw from looking at the scans and what areas she thought would be affected on Makinley. Makinely has large gaps/cysts in the white brain matter. This interferes with the messages that need to be sent to and from her spinal cord. Makinley's gaps are closer to her brain which means her lower extremities will be more affected. Therefore we do not know if Makinley will ever crawl or walk on her own or assisted. Elizabeth explained that mentally we will not know where Makinley is at until she is older. She is currently doing really well and is receptive to people, noises, and toys around her visually and audibly. It could even be that Makinley will be able to learn things it just wont be to the depth that others learn. For instance she may say "The boy ran." and we would say "The two year old boy ran quickly down the street."
She went on to tell us the better news. We can try to "train" Makinley's brain to pick up more signals. We may need to teach her backwards by showing/making her body do a movement and then the signal gets sent to her brain and recognizes it needs to make a path for that signal. I compare it to a road closed. If you travel the same road and all of the sudden that road is gone you are stuck. But someone or something can help direct you a different way to still get the final outcome. In the same way - we can try to teach Makinley things and hope that her brain will recognize the signal, realize it doesn't have a path for that signal, and send messages down new pathways around the gaps in her brain.
Although this information is hard to hear - we are thankful that we have found it so early. Most PVL cases are not found until a child is two or three years old and is not progressing normally. We are lucky we found Makinley's very early and we can start sending her messages before her actual due date. We know this was in God's plan and we will embrace it. I just have to remind myself to focus on one day at a time and not try to fix years down the road.
To Makinley: I want you to focus on this important message from your daddy and I. We love you forever and ever. We were not happy when we heard about your brain disorder. We felt discouraged and scared of what everything meant. But we want you to know that our love for you NEVER changed. We love you just the way you are. Remember that God never messes up and His plan is perfect. He created you inside of me and He created you just how HE wanted you to be. He wanted you to have clubbed feet when you were born, He wanted you to have two thumbs on your right hand, He wanted you to have ears and a nose like your dad's, He wanted you to have lots of dark hair, He wanted you to be here! And as much as we love you here on this earth - God loves you even more than we can. Isn't that amazing. Don't ever let anyone tell you that you are not special or that you have problems. You are a fighter! You kept fighting to be alive while you were in my tummy and you will be a fighter on earth too. God needs you to be strong and we need you to be strong. We promise to walk beside you and support you through your entire life no matter what challenges lay ahead. We will be your listening ears, your advocates, your cheerleaders, and your cuddle buddies. Remember Makinley Grace - WE LOVE YOU! Your disorder does not change that but instead makes us love you even more! Don't ever forget that.
No comments:
Post a Comment