Written by Bleigh Ahl Garcia
It has been 1 year since Tristan was born, and 360 days since I received he news that he has Down Syndrome. As I sit here in amazement at the whirlwind of a year we have had with Tristan in our lives, I just wanted to share a few things I have graciously learned so far in this journey.
1. Always try to look at people through God’s eyes…. if you look with your own eyes, you might miss something.
Having Tristan has taught me to see people for who they really are. I’ve always thought I was pretty good at this because of how I was raised, but I have to admit that I was giving myself way too much credit. After having a child with Down Syndrome, God has softened my heart so much and has given me more compassion for all types of people. I didn’t realize how much I needed it. I no longer am fearful of or uncomfortable around people with developmental disabilities or brain injuries. That fear came from a place of ignorance and misunderstanding. Tristan may have different needs and need a little more attention and care, but raising him as been just as “normal” as raising our son without Down Syndrome. He is a child who needs to eat, sleep, poop and be changed. He smiles when he’s happy, and he cries when he’s not. He has feelings. He has a spirit. His life is precious, and he has a specific purpose and calling. Most of all, he is loved by a God who doesn’t make mistakes. When God looks at him, He is overwhelmed with love. That’s how He sees all of us. My prayer is that I have the ability to look at people and see the value of their spirit first, rather than their disabilities and outward appearance.
2. Celebrate the Small Victories.
I’ve come to realize that every effort that Tristan makes to make a sound or move on his own is a HUGE accomplishment. Have you crawled recently? Like, literally gotten on the floor and army crawled on your belly? Well if you haven’t, just trust me….it hurts. For a child with a developmental delay, a heart defect, low muscle tone, vision problems, and breathing problems… crawling 2 yards is like running a marathon. That is something that most of us ‘normal’ and healty adults would complain about on a daily basis without realizing it. So, we will celebrate every single “milestone” whenever it happens, even if it is 2 years later. Though some victories may seem small to others, they are huge to Tristan….and that’s worth celebrating.
3. Slow Down & Enjoy the Ride.
I have to admit, although we have our struggles, my husband and I could win an olympic medal at getting things done on a schedule. More specifically, healthy meal planning while on the go for a family of four. We have spent a lot of our lives in a “rush” because there has been so much to get done, and way too many things on our plate. Instead of slowing down, we just became professional “rushers”. In all of that busyness and rushing, sometimes we miss out on the little blessings and the little moments that are precious. I believe that one of the thousand reasons Tristan was given to us was to slow us down. This past months, Tristan has just started learning how to wave “hi” and “bye”. Although it may take him an extra 20 seconds to respond, it’s so worth the wait to watch his brain process all of that information and respond with his little arm flapping up and down. When he does finally respond, we are so excited that we want to see him do it all over again. He is teaching us to enjoy those little moments and not focus so much about ‘getting things done’. We know that Tristan may take a little longer to do some things, and we hope that forces us to slow down and enjoy every second of this beautiful journey.
4. Low muscle tone has a silver lining.
Have you ever been cuddled by a baby with hypotonia? If you have held Tristan, you know what I mean. Oh. My. Word. There is nothing like it. There are some nights that I literally can’t put Tristan down. He nestles into my neck, and fits the contours of my body like a glove. Actually he fits anyone like a glove. It’s a beautiful thing.
5. Resist the temptation to compare your child.
I have so many times fallen into the trap of comparing my Tristan with other children. I will admit it….I have often looked at pictures and videos of “normal” kids walking and talking at 12 months or earlier, and get that paranoia feeling in stomach because my child isn’t even sitting up on his own yet. As if we are in some sort of race. Why the heck would I do that? I don’t know. It’s dumb. But I am a parent, and the temptation is there. Somehow we think that if our children don’t meet certain milestones according to the “normal” order, that something is terribly wrong. Well, something might be wrong according to child development standards, and we may need to take some action… but those milestones don’t determine the value of my child’s life and the character he has. He is trying his best with the cards he has been dealt, and I think it’s safe to say that God’s view of him is so much better than anyone else’s anyway. Comparison is pointless because no two children are the same. Each one of them is made with a unique set of talents, abilities, quirks, and God-given gifts….and if we compare them to other children, we won’t ever be able to truly appreciate them for the gems they are.
6. Unconditional love is stronger than any force in this world.
Not much explanation needed. If you are a parent, chances are you would run through fire for your child. Your heart literally breaks when they are sick or hurting, and their laugh can turn the worst moment into the best moment. My heart was broken the moment the doctor told me that Tristan has Down Syndrome. I felt despair, depression, confusion, anger and pain for months. But underneath of all that, without even trying, I loved him with a love that is unconditional and fierce. To this day, there is nothing in the world that could make me love him less. My husband and I have literally changed our entire lives for the health & wellness of our children, and we will continue sacrificing and fighting until the day we die. Most of you, if you are parents, have done the same. That is powerful, and that is just a tiny speck of how God feels about us. The only reason we have the ability to love our kids with that fierce love, is because God showed us the perfect example.
7. Parents are so underrated.
Ok, there is so much I could say, but I will try to keep to a minimum!!! I realize I may get some dirty looks for this part, and that’s ok. For some reason when it comes to kids with disabilities, parents are typically viewed as if they are helpless, clueless and part of the problem, rather than the solution. In most cases, we parents do feel like we are not prepared or capable of helping our child become well. So we do what we are told from day one, and we pass them on to therapists and health professionals, and expect them to be the main part of the solution. Of course we love our kids and we support them, but we expect other people to help make them well because we are simply not capable. (By the way, there is nothing wrong with therapy, programs, learning centers, schools, etc. Tristan receives therapy, and I completely respect the therapists and learn from them!) But for me, 45 minutes every other week is not enough. “Come back in 6 months” is not enough. Having Tristan has caused me to see the value of my role as it applies to his progress and wellness. Yes, I am aware that not all parents of children with special needs are able to quit their jobs, take brain-injury training courses, and become full-time parents. That was my path, and it came with a lot of sacrifice and tough decisions. But if given the chance, the proper guidance and education, parents can literally help their kids move mountains. Parents, do we believe that we are actually capable of being the best doctor, therapist, teacher, counselor, coach and advocate for our kids? I am not trying to minimize the need for all of the positions and titles mentioned, because I truly believe that there are some amazing ones out there that are great at what they do, and are VERY much needed. I am simply trying to encourage parents to step into their role with confidence, and not be bullied or forced through the cattle shoot when it comes to the health and wellness of our children. We have a major advantage over anyone else…. we KNOW our kids best. We also LOVE them more than anyone else does. If you are a parent, or plan to be one some day, I hope you know your worth and your value when it comes to your child. Do your research, pray and trust your gut. God gave them to us for a reason.
8. Stereotypes are wack. Don’t ever judge a book by it’s cover. Ever.
We have heard this all of our lives, but somehow in our messy human-ness we still do it all the time. This is especially true for people who have brain injuries (other known as intellectual delays, mental retardation, disabilities, disorders, syndromes, etc) We automatically assume that because a person looks like they have a “problem”, they must be unintelligent. Just because a person can’t speak well or at all, they must not understand what your saying. When a child with a brain injury has an outburst, we think it’s a behavioral issue. When someone with a genetic disorder makes a ‘strange noise’, we get uncomfortable and assume there is no purpose or meaning behind it. So wrong. On so many levels. The human brain is so fascinating. What we see and hear on the outside is not always a clear indication of what’s going on inside. Thanks to the staff the Institutes for the Achievement of Human Potential, I have truly learned to appreciate and understand the capabilities of the human brain. Even the injured one. Every single child is extremely intelligent because that is the way they are designed. There is so much more to a person than what we see with our eyes.
9. It’s ok to ask for help. Actually, it’s necessary.
I am a stubborn and independent person, and it’s hard for me to over come my need for independence. Somewhere along the way I got this idea that asking for help is a nuisance to others, and that I’d rather just do it myself. I’ve been like that since the day I was born, and it’s taken a lot of lessons learned and a very patient God to humble me through the years. Call it pride, being introverted and shy, a thinker and a problem solver, stubborn…or a combination of all of the above. But when God decided He was going to give me a son who was in the NICU for 2 weeks, born with a heart defect and Down Syndrome, I pretty much had to surrender all of that and ask for help. I couldn’t possibly live my life without asking for help from God, and the people He has placed in my path. I don’t think any of us are meant to live our lives without help from others, and definitely not meant to live life without help from the One who knows us best. It would be impossible. We just can’t go it alone and resist temptation, make wise decisions, and get back up when we get knocked down. If we don’t ask for help, we don’t stand a chance.
10. You can plan your life all you want, but God’s plan always wins.
This isn’t a bad thing by the way. I’m so glad He wins, because my plans had me going nowhere fast. Even though we may think we know what we need….we have no idea. We can’t see past today. We can’t even see past 2 seconds from now. He already knows my life story and knows what’s best. He knew we needed Tristan. He knew that Tristan would bless us. He knew that this road was the road worth traveling down. I have to tell you, 1 year later, it’s so obvious that this is the life we were meant to live. Is it easier? Heck no. It’s madness. But I wouldn’t trade it for the world. Every doctors appointment. Every sleepless night. Every tear. Every hurdle. God has been there every step of the way, and hasn’t left our side once.
You know that baby I was mourning over when Tristan was born? You know, the “normal” and healthy one that I thought I was going to have; the one WITHOUT Down Syndrome? Well after one year with Tristan, I don’t want that baby anymore. I want Tristan. And all 47 of his chromosomes.
For more from Bleigh, please, see the below video of her and her struggles of coping with and learning to become the best mother for her child, other son and family.
Editor’s Note: This was written by my lovely sister who has begun her own personal, grass roots efforts in building awareness/education for families and parents whose child/children have down syndrome, and for raising funds to help pay for Tristan’s healthcare services (which still are under-developed in our culture and whose costs add up to so much more than what is made by the average family). Because of the extra care needed for Tristan’s proper development in the most critical years of his life, Bleigh left her comfortable job with benefits to give her time to something much more important than money, her children. Her adjustment from a comfortable job and income to a “just making it by” full-time mom X2″ has been difficult, but, for those who are fortunate enough to have known and know my amazing sister, Bleigh is beyond special.
Just through a natural need to express her feelings and concerns, Bleigh began inspiring the lives’ of others and after taking to the pen and writing, continuously telling her story, she has been able to have a tremendous impact on the health and well-being of others as well as herself. Ignorance leads to much misunderstood truths and so when most other parents are put in this situation, it is very difficult and it can lead to much self questioning and pain, anger, sorrow, etc. So, in order to best care and love their child many have to (more often than usual) drastically change their perspectives on life.
My sister has since created her own blog (www.tristan21.com) and has started to write and share her ups and downs, successes, everyday struggles, everyday triumphs, and much more. Her story, which has reached thousands upon thousands of others, has started to shed some much needed truth and light on the subject of being a parent of a child with down syndrome. Bleigh’s blog and efforts have led to the bi-annual event “Dance for Down Syndrome” which you can learn more about through visiting her site!
(Any views, opinions, etc. inferred from or expressed in this article are not of The News of Salem County LLC’s, however, we believe treating those with down syndrome and the families living with those with down syndrome is essential to the growth and development of our society, communities, and personal selves.)
– See more at: http://newsofsalemcounty.com/10-things-my-child-with-down-syndrome-has-taught-me-by-bleigh-ahl-garcia/#sthash.8Ow95pVP.dpuf