Taking Advantage Of What God Gave Me

A story about my daughter and I journey with her disability and rare disorder . also trying to raise awareness.

The opportunity to share the story of my daughter Ryleigh and myself is beyond incredible. I couldn't have asked for a more perfect little human being to be a part of my world. Her smile and presence light up every room and every person’s life she comes across in the very little time she has been on this earth. I am so thankful to call her my own. Of course, as a mother of a special needs child there have been times that I have felt alone, or I felt like giving up hope and just breaking down. It's only natural as a mother to feel these emotions as we want the very best for our children. Not only the very best but comfort, happiness, love, peace, absence of pain, and more. The unexpected things that have happened in my life while caring for my beautiful daughter, the good and the bad, I’m grateful for it all. These things make me a better person, or should I say mother. I have God to thank for bringing her into my life, and giving me this special gift. Special needs children are the most precious gifts imaginable. You just can’t believe the amount of love you can give another person that you have created. I love doing everything for her and seeing the way she looks at me in a thankful and loving way. The burden of caring for such a special little girl brings me such joy in my heart and soul. It completes me.
Ryleigh has touched the lives of many people over the past three years of her life and has shown others how to stay strong and fight for the life they were given. Ryleigh was born with a rare Mitochondrial Disease called Pyruvate Dehydrogenase Deficiency. Most children, especially boys with this terrible disease don't live past the first week or so of being in this world. There are different severities of the disease and she is on the severe side. Her symptoms are so severe they consider her a "BOY". Ryleigh has a multitude of other diagnoses that make it very severe and complicate her already fragile body. These consist of Microcephaly, Cerebral Palsy, Deafness, Submucous Cleft Palate, Agenesis of the Corpus Callosum, White Matter Loss, Optic Nerve Hypoplasia, Failure to Thrive, Short Cerebellums, growth problems, food intolerances, breathing problems, Sleep Apnea and more. This disease is debilitating and degenerative. It causes her daily pain and fatigue, yet she is so strong and such a fighter. She smiles through it all and shows me how to not complain about the small things. For her to have enough energy for her body to function she has to be on a specific diet called Keto. Yes i know what you're thinking. Oh this is a diet I know of or have even tried. Well her diet is different. Without this precise diet she wouldn't be here with me today. Ryleigh’s body cannot break down carbs and sugars. It damages her Mitochondrial cells in her whole body which cannot be replaced, replenished, or even fixed. There is no cure for Mitochondrial Disease. AS OF YET! That is why we use every chance we can get to raise awareness for others to be in our loop and help fight and find a cure. Sometimes the gene for this disease is hereditary, but not always.
In Ryleigh’s case she mutated her own DNA. Which means she added a little more to her DNA which caused all of her diagnoses. You can learn more about her specific Mitochondrial Disease by going to www.umdf.org. It was not passed onto her by us. Her father and I got the genetic testing done to verify, just in case we ever had any more children. Unfortunately, I am not able to anyway. My two children before Ryleigh are healthy and "normal". It was just a fluke in her DNA. I used to think it was all my fault but I have finally come to peace with myself after the genetic test results confirmed it wasn’t anyone's fault. It can be so exhausting to go through each day and go through the motions and repetitive tasks but Ryleigh is worth every minute. To watch her meet the milestones in her own course of growth is so exciting and makes my heart sing. She can’t walk, talk, crawl, or even hold herself up, but just the small milestones she hits like using her hands and feet to feel, and sometimes reaching for things, we scream and praise her to encourage more growth. It is definitely tough and sad in a way to see others her age developing fast, doing a ton more, and meeting all their milestones. When seeing children younger than her doing so much more than she is able to, I make sure I hold her, squeeze her, and say a thank you to God for all that she CAN do.
Being a mother to special needs children takes a toll on you as a person. Spending all our time, energy, and focus on our kids means that we forget ourselves sometimes. NEVER deny yourself some "me time". It's healthy and needed to have some time to yourself. Do not feel guilty because it is not a selfish thing to want some time for yourself. Taking time for myself has given me more energy and strength to keep going and to fight alongside her. She has so many appointments each month, and so many specialists it's hard to keep track. I have a whole wall in my kitchen of all her doctor’s appointments and office cards with numbers galore. Thank goodness for Children's Hospital Visit Navigation Department. Without them I couldn't keep my head on straight. They schedule appointments and help me with anything I may need or want to ask about. This service saves me so much time and effort waiting on the phone all day. They also send me a printed schedule each month. Thank you Visit Navigation! Of course there is much more to her daily life like therapies, and equipment, and nursing. Like I said, it's exhausting but so worth it. We never know or will never know how much time we have with Ryleigh Mae but we cherish each and every moment we have. Always stand strong and fight, and never lose hope. We just recently went on a make a wish trip with her and made many more happy memories with family at Disney. -Amber Lynn Martin

Author's Note

please feel free to comment, ask questions, and of course share away! our gofundme page is www.gofundme.com/ryleighmartin

Reviews

[Abishai100]

Thanks so much for sharing this Amber. Your child's condition sounds devastating and it really sounds like you are doing what's possible to be with your child(!). Perhaps the special Keto diet will help. Something I've discovered that helps with lifestyle-diets is complementary emotional support which is something you seem certainly excited to provide!

I've found that writing helps me sort out complicated emotions about life and its challenges, and I appreciated how you used writing here to accent your spiritual contemplation of children's illness(!).

Your writing-style is simultaneously direct and sensitive, and you might feel inspired experimenting with poetry, but that's just my advice...

I hope God continues to comfort you and you find more worthwhile matters to express in words. Enjoy the rest of this summer 2019 (it's been really hot and humid in New Jersey).

Stay cool,

A

[amber martin]

Thank you very much! I strive to be selfless and give all of me. I appreciate the kind words, encouragement and of course the advice. I actually do in fact write poetry but have not written any in about a year. poetry is a wonderful way to put my feelings out there.

[John the Baptist]

Reading this made me think of the Book of Job. From our human views of fairness, it is difficult to see why some are called upon to bear so much. On the other hand, the response your daughter's situation has summoned from you is nothing short of inspiring. May Life unfold to you in all the best of ways.

[amber martin]

Thanj you so much! I hope the same.