Diagnosis season
Christmas season 2010 was a time that would change our family forever. I wanted to bring this time up because this truly is when our lives with Brookie changed. We became a somewhat "normal" family to "that" family with the special needs child. It was chaotic, it was hard, it was sad, and it was a time to remember. I was looking over her Caring bridge site that I updated her first few years and I was actually impressed with myself. I was expecting a lot of sorrow and whoa is me's in there but looking back I remember I NEVER felt alone. Because we have faith in the Savior Jesus Christ and the comfort in knowing God loves us, I really feel like it helped me accept her diagnosis. Don't get me wrong, I was devastated and felt like my heart was ripped out of my chest, but looking at this sweet babe and not knowing her future made me cling on to the little moments and not take things for granted. I remember Ryan and I never fought and we said I love you's more often. I remember hugging my girls tight and not being too busy to listen. I remember feeling God's love for me more than any other time in my life. I remember my testimony grew. I remember I literally "grew" up over night. Here is an excerpt from her Caringbridge during that time -
'Here alone in the hospital room with sweet little Brookie, I feel the need to reflect on what is now going on in our lives. First of all, thank you so, so, so much for all of the love and prayers and support. We need it so much right now and I am grateful to our family and friends who are all there for us. I do not know if I could do this without you. Brooke has been diagnosed with a severe seizure disorder. She will have them all her life and because of this, her little body may not develop how it is supposed to. It is hard to tell with the little girls who get this syndrome on what her life will be like. It is so rare, there are less than 900 cases in the US, and it is a genetic defect that is not hereditary, just happened quickly after she was formed in my womb. A lot of her condition will be a learning process; we will see how she is as she grows. She may speak, she may not. She may walk, she may not. For now I am praying for her to be on the better end of the spectrum that is all we can really do. She has a cyst in her brain that the doctors are going to remove this week, hopefully Tues, because then we might be able to bring her home on Christmas! We are praying for this so much! Juliette and Audrey really miss their mommy and their baby sister; we want to have a happy family Christmas. When something like this happens, your world is turned upside down. I feel blessed that at least anger is not one of the emotions I feel right now. I am not mad at God, I may be sometimes in the future but anger is not a feeling I have today. I am frightened, overwhelmed, full of love, scared, depressed, sick inside, worried, unsure, so many things and my heart feels like it could burst with the love I have for Brooke and my other 2 girls. I know Heavenly Father is near me right now, I feel the Savior carrying me through as I take in all of this devastating news. These two facts alone are the only things keeping me afloat right now. (Holiday season 2009)
Perfect time in our lives, NOOOOO, but one of tender mercies and answered prayers.
First Smiles
Brookie did not smile on time, her seizures left no room for happiness and she cried and slept a lot once her infantile spasms set in. But once they did, it was the sweetest thing I have ever seen. From 2010-
We have had a good couple of days and I know Heavenly Father has answered the countless prayers Ryan and I have offered for Brooke, pleading with Him to give her comfort so that her "broken" little body can be strong and withstand the side effects of these harsh medicines. She smiled today! Tears came to my eyes, for it has been a week since we have seen her happy! I missed my snugglebunny baby girl! I am so grateful for a loving Heavenly Father who is aware of what we are going through and will help us if we ask in faith.
Although Brooke's life will be full of struggles, I am grateful for the chance to be humbled to my knees on a daily basis. We have to rely on the Lord now more than ever, I have no choice. Or I will not survive this, watching her suffer and knowing what she will not get to experience in this life. I love the quote "When life gets too hard to stand, kneel." This has been my motto for these past 9 weeks. I am constantly pleading with the Lord to bless her, comfort her, help her be strong, help Ryan and I to be strong, and I have felt His love in return every time I have asked for it.
Isn't this a miracle? To have a constant flow of the Spirit in our home everyday, all because of a sweet, valiant spirit that we get to protect and take care of. Don't get me wrong, I get depressed thinking of all of the trials she will have and I grieve for "what might have been" but I have faith that if I am faithful, I will get to see her in a perfect, unbroken ressurected body and that makes it all worth it. (Early in the year 2010)
Blessing Day
In our church we bless our children in sacrament meeting around the time they are about 2 months old. It is not a baptism, but a blessing to guide them in their life and introduce them to their church family. It is tradition, special and I admit I was nervous for Brookie's. Blessings are usually given by the father and they often talk about hopes for the future, prayers for a long happy life, plans etc. Well we kind of already knew her life would be extremely limited, short and I didn't want this to be a sad day or feel unfinished as Ryan gave her a blessing. But of course the Lord provides and we were not disappointed. It was a very special special day.
Today was Brookie's blessing day and everything was wonderful. The Spirit was so strong as Ryan gave her the blessing and my heart was touched at the wonderful things he asked for in her behalf. Truly it was a special moment for him and for Brooke together. I am so grateful to have family and friends who came to see her blessing and to support us. We are so blessed to have such wonderful people in our life! (Winter 2009)
Sisters
Brookie was very lucky to be born last because she has amazing big sisters who watch our for her. Time and again I am reminded of the little ladies they are becoming and the life lessons they are learning having Brookie as their sister. It makes me sad sometimes to see the ways they have to grow up more quickly but, they just love their Brookie.
Audi was playing dolls and she ran in to my room carrying her baby yelling, "Mommy Mommy my baby is having a seizure!" My heart ached for why should a 2 year old even know what a seizure is. Then I stopped and realized I could make this a teaching moment instead of getting depressed that even my kids had to face this sad reality. I asked her " Audrey, what do we do?" she sweetly replied," We love her and rub her back." She must watch me hold Brookie as I comfort her through a seizure because that is exactly what I do. It brought tears to my eyes thinking that her sweet big sister was watching out for little Brooke. Oh the things our little ones notice!
A few days later, Brooke was in the middle of a pretty long episode and Juliette asked, " Mommy, why does Brookie have seizures?" I told her it is because Heavenly Father made her brain special, and that she would need extra help and love. She thought about this and said, " But why is He being so mean?"
This question has come to my mind much to my chagrin, but it is hard to not have moments of bitterness as I sit helpless holding my convulsing, confused, precious little baby. It is such a miserable feeling. I too have felt, "Why, this baby, why any child?" But instead of falling apart in front of Juliette I replied" Brookie is a perfect spirit and she chose the right all of the time before she came to earth to be part of our family. She is here now to teach us how to love REALLY well." That answer must have satisfied her because she went back to her coloring book.
I never in a million years thought I would be discussing these serious topics with my little ones. ( Spring 2010)
I have a million stories just like this one and as Juliette and Audrey have grown and matured their understanding of Brookie's condition has grown and their sweet testimonies of God and Brookie's spirit of brought so many tender moments. Juliette and Brooke have a particularly special bond. I have never seen such a magnetic bond between 2 people. Truly they knew each other before this life. My girls just feel and seem at home together, words don't have to be spoken. And as Audrey and Juliette serve their sister, they are learning to be better people.
Aicardi Syndrome Family
Part of getting diagnosed with a disease or having your child diagnosed with one is you become part of a family. A family of parents who "get it". Luckily the Aicardi Syndrome Family is a very very special one. Our first conference was in 2010 and it changed my life. It made me realize we were not alone in this special needs world and seeing all of those brave parents made me realize that I could do it too. And we have never looked back! Brookie has embraced the spirit of the brave Aicardi warrior, I have reached out and have over 100 FACEBOOK friends that are parents of children with AS. We laugh together, cry together, share ideas, tips, cheer our girls on, follow up on each other's lives, mourn when we lose a sweet girl, pray for those struggling in hospitals. All across the world the Aicardi family bonds together, united to give our kids a better life. I have said before it is the most amazing group I never wanted to be a part of but I am SO glad we are. Here is excerpt from when I got home from the conference-
Brooke and I headed to Chicago! Brooke was an angel on the plane and we got there that night. The resort was a Hilton, really nice even better than I expected. Jodi Tollman, my fellow LDS Aicardi Mom who I had already connected with, was assigned as my " Big Sister" for the conference was in the lobby as we walked in. It was nice to see a familiar face for sure!
The next morning I braced myself for the worst and followed Jodi and her family to the opening of the conference. So many feelings ran through my mind. Could I keep it together? Did I make the right choice by coming? Was this going to depress me even more? I was so scared for up until this point I feel like I have this perfect little baby girl and the disabilities are just starting to show and not in full efffect like some of the other AS girls.
As the doors opened, I admit I felt like I had walked in to my worst nightmare. There were lots of poor little girls in wheel chairs, some walked, some walked with gait trainers, few talked and most of them looked pretty medically involved. My heart sank. Is this Brookie's future? A life full of trials, shortened by her syndrome? I admit I wanted to burst in to tears and run to my room. But, I pulled it together and looked again around the room and what I saw was much different than the first time I scanned the crowd. Instead of broken little girls, I saw angels. Sweet faces, happy smiles, bright eyes, and proud parents. I saw babies, toddlers, preschoolers, elementary age, tweens, teens, even young adults. I saw hope, love and most of all I felt the Spirit confirm to me that I held a celestial spirit in my arms. The room was filled with these pure perfect little girls and immediately I felt humbled. THe conference began, and my heart was full. I felt so honored to be in a room with such righteous girls, already promised to achieve all of God's blessings. I felt inadequate being in their sweet presence. I was in awe at the parents who were there, carrying on, despite the extreme difficulties their precious children faced. It gave me hope and some of the heartache I had initially felt began to fade.( wow I have grown these past 5 years)
I am going to fast forward a bit, I do not want this post to be an encyclopedia but I might mention Brookie had so many good memories and milestones. Proving her doctors wrong she continually has made achievements, here a little, there a little. She has taught us to slow down, focus on things that matter, and let the simple joys be the focus. Even though I am so busy being her mom, I catch myself just looking at her, smiling, and thanking God for her. Life is hard but good.
From preschool, therapy, learning to sit up finally (yay big day), family vacations, traditions, doctor's appointments, a move, of all these things made up the hectic crazy first few years of Brookie's life. I developed a new family motto though from these crazy years. It is fitting to wrap of this recap post.
Life does not have to be perfect to be wonderful.
thank you for reading xoxo- Brit
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