Love heals all wounds

Last week Hailey, my 4 year old, fell while riding her scooter around the driveway. The fall resulted in a large round scrape on her knee. She cried and cried. Not even mommy's hugs while cleaning out the grit that got trapped in the fresh wound could make the pain go away. Upon reflection, I realized Hailey's scrape was similar to the pain my heart had been feeling. When I first was told of Hayden's condition, my mind went in to "fix it" mode, just as it had when Hailey fell on the driveway. It was only days later as the reality set in that I couldn't put a band-aide on Hayden and make her better did I really feel the wound. It was a raw, burning pain that would not go away. I could not eat or sleep without feeling its presence. The more I dug in to clean out my heart's wound, the more it burned. I tried reading about other people's experiences with their Angel's, learning how they lived and coped. What I began to see were people who have given up their lives for the condition. It sounded like a horrible fate, esp. for a family as active and full of life as we have always been. Dreams we had for our girls had been shattered in an instant after hearing the results found in one drop of blood.

I struggled with why God would create such a condition and make little, innocent children suffer for it. If He had something He wanted Dave and me to learn, I wish He would have made us hurt in order to grow, not our child. I kept thinking of how He let His only Son suffer so much for all His other children so that one day we could be reunited. It must have been the most raw, burning pain to see your own child beaten and crucified in such an inhumane way. Yet, He let it happen to bring us all closer to Him. What, then, was His purpose in creating Hayden this way with an inability to speak or even walk one day without losing balance? Why did He create such a condition where children can't even get reprive in sleep and then allow them to have seizures which are hard to control even with medication as they get older?

The week following her diagnosis, I turned away, not only from God, but also from Hayden. When I interacted with Hayden or tried to practice her physical therapy, I would break down in tears. I could not separate the condition from this precious little baby, my child. Thank God for my amazing husband who took over. He cared for Hayden, prayed for her and for me as I struggled to come accept our future as a family.

A dear friend of mine told me 3 wise thoughts. First: unsubscribe to the blogs and chat rooms of others with this condition. The families who are truly living with Angel's are not sitting on their computers wallowing in sorrows all day long. Second: we have been so fortunate to discover Hayden's condition this early on. Most children do not get diagnosed until years later. Knowing is half the battle. Now we can thoroughly focus on all forms of early intervention. There is no telling her true potential since we can begin therapies so early on. Third: acknowledge the condition, but focus on the possibilities - what she can bring to our family and the hope for a cure. It isn't merely a dream. It will be a reality.

Hailey and I went to visit my sister for the weekend so Hailey could play with her cousin, Amber, and I could come to terms with the thoughts flying through my head. Dave brought Hayden down for the day that Sunday. As he arrived Hailey raced to the car, jumped in, gave Hayden a huge hug and kiss and said "I love you Hayden Grace!" Hayden lit up when she saw her sister and heard her excited voice. It was at that moment I saw God's love through my children's eyes. The sun began to shine brighter than it had all week and I felt a peace I had been missing.

God didn't put a band-aide on my pain and make it all better, but He did give me a kiss and hug and let me know that in time, my wound will heal. My girls don't feel this pain in their innocent, young lives. They only feel sweet, pure love. How much I have to learn from them.

Hayden Grace, our little angel

My husband, David, and I have been blessed to have 2 very special little girls. Hailey Marie is a vibrant, active, athletic 4 year old who loves riding bikes, scooters, playing soccer and tennis in the backyard with her daddy, and turning into a monkey on her playset. She adores every baby doll she has adopted and believes with her whole heart that you can never have too many babies or strollers (she currently has 3 - 2 umbrella strollers and 1 double jogger for her dolls). Her mind is always active, albeit a wee bit headstrong, she has a love for learning and being challenged. Hayden Grace, her 16 month old sister, is a McCurdy through and through - looking just like her daddy and many of her baby pictures could be mistaken for her cousin, Maggie (Dave's brother's little girl) - who is always smiling and affectionate! Although we have raised our girls in the same home, I am amazed at how different Hailey and Hayden are - from their eating and sleeping habits to Hayden's contentment with sitting in a carseat or stroller (Hailey used to scream until my ears rang), yet adversity to a hiking backpack (which Hailey, of course, loved being in for hours). Even the toys they gravitate to are opposites. So much for my sociological philosophy - maybe children aren't a product of their environment after all! One thing is certain though, they both adore each other with such a pure and innocent love. Watching them interact fills my heart to overflowing with gratitude for all God has given us.

Here is a little update on Hayden… her neurologist ordered chromosomal blood work and we received the results late last week. She has a genetic condition called “Angelman’s Syndrome” – it is a rare condition, located on the maternal 15th chromosome. Reading up on it explains much of our stress and grief related to her over the past 16 mos for she exhibits almost all character traits to a degree, everything from her reflux, chronic ear and sinus infections, lack of sleeping through the night, balance issues, not talking, overly happy demeanor, and eating/swallowing issues. The largest heartbreak for us is that many children with this condition never walk or talk and develop seizures as they grow. She may never say “Mommy, I love you” but she already showers us with love and kisses and you can read a thousand words in her deep blue eyes. The greatest blessing with them is that they really are living angels. They have the happiest disposition, always smiling or laughing. They do not judge others or feel the pains of prejudice. Other than what they can’t do, they look “normal”. They are very loving and can understand the world around them, just have trouble communicating. We struggled for the first 48 hours with the news, but now truly believe God put her in our lives because He knew we need her as much as she needs us. With my PT background, Dave’s sincere, compassionate personality, Hailey’s love and devotion to babies, and even Tucker, our dog’s, loyalty to his girls (he never leaves their side) – Hayden couldn’t be in a better home. Plus, Dave and I have never been ones to back down from a challenge or adversity, anyone who knows us can attest to that. Isn’t that genetically predisposed as well???

We have been reading up on all the current research related to Angelman’s. It is truly fascinating. The main clinical finding is that nothing is mutated or destroyed in the body, just a missing component found on the maternal 15th chromosome. Already, they have been able to reinstate the “missing piece to the chromosomal puzzle” on mice and the AS symptoms or deficits were completed restored. The thought process is that they should be able to do this in humans as well. Another area of research is trying to “turn on” the dormant male 15th chromosome counterpart bio-chemically (since it is perfectly healthy and just sitting there doing nothing in the body). They are exploring literally 14,000 different chemicals that are already FDA approved to see if any of them “turn the green light on” on the other side. All of this makes me extremely hopeful that there is a cure and it really is just a matter of short time to make it click. This past weekend, the Angelman Foundation had a convention in Orlando where they announced the formation of the “Angelman Syndrome Research Institute”. Rather than wait for government funding or a pharmaceutical company to cover the overhead for treatment options (the mindset is that they are so close to a cure, they don’t need to get lost in “treatment of the disorder” mindset), they are privately funding the research since the technology and knowledge is already there. We are definitely going to continue to study and learn as much as we can about this.

Hayden is so high functioning already (plus, having parents as she has, she will not have the ability to slack off with her therapy). For example, she began sitting independently at 6 ½ months. I have read where many angels don’t even have the muscle tone and balance to sit until they are 3 years old. We truly feel blessed and that this isn’t tragic, just different from the picture we envisioned for our girls. At least they won’t be yelling and fighting like many siblings do!

I plan to add posts related to Hayden's medical history, current struggles as well as victories we celebrate, and updates on what I learn about Angelman's Syndrome, research and the cure. I hope our experiences, love, and faith help others who may be struggling to find answers as well. I am sure there will be days where tears will blur my vision while I type, but others where God's spirit will guide my words. Please share our blog with friends and family. Through knowledge, faith and prayer, all things are possible. God bless.